Test results are back and for the most part they are pretty good! The V/Q scan came back totally negative and he doesn't have any blood clots, so this was the first part of the good news! The echo showed his ejection fraction to be at 65% which was up from last week so that is wonderful news! Something that they noticed last week that they are going to keep an eye on though is that his right side of the heart is a little stiff which is not uncommon early on in heart transplant patients, sometimes it just takes awhile for it to get revvvin... if you get my drift. But after a certain point it should be up and beating as well as the other side. Last weeks echo showed it was really stiff and yesterdays echo showed the same thing, so they ordered a right heart cath to be done at the same time as his biopsy on Thursday to measure the pressures of that right side just to make sure that it is doing what it is supposed to be doing and is just sleepy and not failing! So prayers needed for that one!
Also, David is being a real booger about one of his meds, he pretty much refuses to take one of them. It is a medicine that he either has to suck on or swish in his mouth and then swallow to prevent an oral infection and he says the medicine is disgusting, which I am sure it is, and he flat out refuses to take it. The doctor told him yesterday how bad it would be for him if he got an infection but he just doesn't care, there is only so much I can do here about this. He isn't 4 any more and as much as I would like to hold him down and make him take it I just can't:) So I would really appreciate some prayers in that regard as well!!
We have spent a very relaxing day today after yesterday, both of us are in our lounging about clothes, Dave rented an in room movie and I have played on the computer and done some reading. It has been quite nice today, I wish it was a bit warmer I would step outside for a bit and work on my sun tan!! He wants to go out and about tomorrow and see some sights and do some errands, plus he has a list for the grocery store, so it is probably good we had a day of rest!
Tuesday, March 31, 2009
Monday, March 30, 2009
Not for the Weak Stomach
Doug took pictures of David's scars yesterday because David of course thinks that is amazing how much trauma his body has been through in the last 6 weeks. So here are the pictures, we have edited one of them so you can see what each "hole" was for.
You may need to click on the picture to see what the words say!
You may need to click on the picture to see what the words say!
This is how long his scar is from where they inserted the pump in February.
March 30th, 2009
Clinic Monday started out very normal as clinic days go. Until we mentioned to the doctor that David had some heart racing episodes on Friday night, which they call tachycardia. The doctor wasn't very thrilled to hear about this and with that paired with the slight rejection status that showed up on the biopsy on Thursday they wanted to do another Echo right away to make sure that the heart wasn't showing any further signs of rejection. As well as that David is now wearing a portable EKG machine to monitor is heart for the next 48 hours to see if it happens again. So we will know tomorrow about the Echo results and we turn the EKG machine back in on Wednesday.
As well as all of that he still has a lot of fluid build up around his ankles, belly, and back that isn't decreasing so the doctor ordered this other scan, I can't remember what it was called all I know is that we had to go to Nuclear Medicine to do it and it took over an hour and a half. But the scan would show if there happens to be any blood clots in his back or lungs that would be possibly building up and providing a fluid blockage. Dave said it was not a fun scan that they made him inhale stuff and then he also had to get an injection as well, and it took a very long time. Then on top of that we had to go and get the Echo done which is not a fast test and get him the portable EKG.
We are just now back in our room at almost 4pm after leaving at 8am this morning, we are both beat. We are praying for positive test results and a good outcome of today. Both of us are planning a low key evening, we couldn't eat lunch until 3pm so we had a late lunch so I am sure it will be snacks for dinner and then early to bed for the both of us tonight!
As well as all of that he still has a lot of fluid build up around his ankles, belly, and back that isn't decreasing so the doctor ordered this other scan, I can't remember what it was called all I know is that we had to go to Nuclear Medicine to do it and it took over an hour and a half. But the scan would show if there happens to be any blood clots in his back or lungs that would be possibly building up and providing a fluid blockage. Dave said it was not a fun scan that they made him inhale stuff and then he also had to get an injection as well, and it took a very long time. Then on top of that we had to go and get the Echo done which is not a fast test and get him the portable EKG.
We are just now back in our room at almost 4pm after leaving at 8am this morning, we are both beat. We are praying for positive test results and a good outcome of today. Both of us are planning a low key evening, we couldn't eat lunch until 3pm so we had a late lunch so I am sure it will be snacks for dinner and then early to bed for the both of us tonight!
Saturday, March 28, 2009
March 28th, 2009
Once again the Lord is teaching me lessons on how to give up control and realize that my plan is not his plan in even the simplest of things. This weekend Doug was supposed to bring the kids so we could spend the first weekend in all of this together finally all under one roof. David was really looking forward to seeing his little brother and sister and even said he would wear that "stupid mask" out to the pool so he could watch them swim. Well, low and behold Claire has had a bad cough for about 2 weeks now and so Doug took her to the doctor on Thursday and our pediatrician said that we just couldn't risk having her around him. We were all so devastated! So the kids spent last night at Traci's so that Doug could drive up to Stanford and I gave him a crash course in care giving and then I left early this morning to spend the night tonight with the kids, then I will go back tomorrow and we will switch.
Not exactly how I was planning my weekend, but the Lord knows what we need and when we need it and apparently my little Claire needs mommy right now and this comes from several sources. My poor little girl has really been having a tough time this week and so when I found that out I realized that the Lord knew that I was needed more at home with my other 2, even if it was just for over night. She hugged me forever when she saw me today and was so happy to have me at home, she painted pictures for over an hour at the dining room table and has been my little helper all day long. Not to say that John hasn't missed me as well, but it was obvious to Claire's teacher and to some others that she was having a hard week, plus she didn't feel well this week and we all know that sometimes we just need mommy to make it all better.
So tonight we are having Sponge Bob Macaroni and Cheese for dinner with Ice Cream Sundaes for Dessert and then we are going to watch a flick because that is what mommies do!! I am looking forward to it because I miss them so very much during the week, I really miss the normality of just plain life stuff. This week is the last week before Easter Break and then they will be gone for an entire week to my mom's and that will be tough on Doug as well as I, but they are so looking forward to it. But then if all goes as planned they will come for two weekends in a row to Stanford, for Easter and then again for David's 2oth Bday the following weekend.
Doug and Dave seem to be having a great time together, when I left they were playing the PlayStation 3 that my brother Rick brought over for Dave to borrow. I put Spaghetti in the crock pot for their dinner and chicken salads in the fridge for lunch, so they were all set. David walked down to breakfast with Doug this morning WITH his mask on, so I was proud of him. They just brought the food back, but still it was a big improvement. They also went to Blockbuster and rented some movies and then Fry's because the two of them can't get enough of Fry's. I am glad they are getting some one on one time this weekend, they need it.
Not exactly how I was planning my weekend, but the Lord knows what we need and when we need it and apparently my little Claire needs mommy right now and this comes from several sources. My poor little girl has really been having a tough time this week and so when I found that out I realized that the Lord knew that I was needed more at home with my other 2, even if it was just for over night. She hugged me forever when she saw me today and was so happy to have me at home, she painted pictures for over an hour at the dining room table and has been my little helper all day long. Not to say that John hasn't missed me as well, but it was obvious to Claire's teacher and to some others that she was having a hard week, plus she didn't feel well this week and we all know that sometimes we just need mommy to make it all better.
So tonight we are having Sponge Bob Macaroni and Cheese for dinner with Ice Cream Sundaes for Dessert and then we are going to watch a flick because that is what mommies do!! I am looking forward to it because I miss them so very much during the week, I really miss the normality of just plain life stuff. This week is the last week before Easter Break and then they will be gone for an entire week to my mom's and that will be tough on Doug as well as I, but they are so looking forward to it. But then if all goes as planned they will come for two weekends in a row to Stanford, for Easter and then again for David's 2oth Bday the following weekend.
Doug and Dave seem to be having a great time together, when I left they were playing the PlayStation 3 that my brother Rick brought over for Dave to borrow. I put Spaghetti in the crock pot for their dinner and chicken salads in the fridge for lunch, so they were all set. David walked down to breakfast with Doug this morning WITH his mask on, so I was proud of him. They just brought the food back, but still it was a big improvement. They also went to Blockbuster and rented some movies and then Fry's because the two of them can't get enough of Fry's. I am glad they are getting some one on one time this weekend, they need it.
Friday, March 27, 2009
March 27th, 2009
First things first, when Dave goes in every week for biopsy's what they are checking for is possible rejection. There are 3 different types of rejection:
Grade 0- No Rejection
Grade 1- Mild Rejection, NOT doing damage to the heart, but inflammation is present, and not treatment is required.
Grade 2- Moderate Rejection, doing some damage to the heart, and requires treatment.
Grade 3- Severe Rejection, major damage to the heart, and requires aggressive treatment.
So of course I have been pretty much holding my breath until they called me today to give me the results of this biopsy. He is at a Grade 1 Rejection right now, this is very common, and as you can see by the chart above they aren't going to be too concerned at this time and it is quite possible that by next week he will be at a Grade 0. This is why they do them every week. They also tested his Ejection Fraction and that was at 63% which is fantastic because before surgery with his old heart it was at 8-10%! They modified some of his medications a little bit, but for the most part all is well.
He had to spend the day at the hospital getting a drug through the IV and he was pretty moody about having to do that, but oh well. I took that time to do some errands and get some things done that I can't do because I can't leave him alone. Doug is getting here in exactly 2 hours and I can't wait to see him! David is resting and is really starting to get down in the dumps, so prayers for him please. He is not liking his living arrangements, hates the mask he has to wear to go out and about, and really doesn't like all the treatments and such. My once very positive boy is slowly going to the negative side.
Today he received a great package from our friends the Pelletiers from Texas! A huge bag full of homemade Caramel Corn and I would guess about 75 or more homemade cards from kids at their church. Before he laid down for a nap he was reading all the cards and I am pretty sure I saw a smile or two, so thanks you guys that was pretty special.
Grade 0- No Rejection
Grade 1- Mild Rejection, NOT doing damage to the heart, but inflammation is present, and not treatment is required.
Grade 2- Moderate Rejection, doing some damage to the heart, and requires treatment.
Grade 3- Severe Rejection, major damage to the heart, and requires aggressive treatment.
So of course I have been pretty much holding my breath until they called me today to give me the results of this biopsy. He is at a Grade 1 Rejection right now, this is very common, and as you can see by the chart above they aren't going to be too concerned at this time and it is quite possible that by next week he will be at a Grade 0. This is why they do them every week. They also tested his Ejection Fraction and that was at 63% which is fantastic because before surgery with his old heart it was at 8-10%! They modified some of his medications a little bit, but for the most part all is well.
He had to spend the day at the hospital getting a drug through the IV and he was pretty moody about having to do that, but oh well. I took that time to do some errands and get some things done that I can't do because I can't leave him alone. Doug is getting here in exactly 2 hours and I can't wait to see him! David is resting and is really starting to get down in the dumps, so prayers for him please. He is not liking his living arrangements, hates the mask he has to wear to go out and about, and really doesn't like all the treatments and such. My once very positive boy is slowly going to the negative side.
Today he received a great package from our friends the Pelletiers from Texas! A huge bag full of homemade Caramel Corn and I would guess about 75 or more homemade cards from kids at their church. Before he laid down for a nap he was reading all the cards and I am pretty sure I saw a smile or two, so thanks you guys that was pretty special.
Thursday, March 26, 2009
March 26th, 2009
Needless to say David and I are both VERY tired today. We had to be at the hospital this morning at 7:30 am for the start of our clinic day and so that meant up by at least 6 am which was hard on the both of us. I feel like I am dragging, I can only imagine how he is feeling. As a matter of fact he is napping right now, poor guy today was hard on him.
First was lab work which was no big deal but of course they couldn't find a good vein so they had to poke him 3 times before finally getting a good draw. Then we went up for our clinic visit, and I just have to say that in each phase of this remarkable journey I get nervous when we are going to be seen by a new group of people. Well, once again my worries were at once put to ease because everyone was terrific from the get go. They were all very familiar with us and knew everything about us, there weren't any gaps or history to go over which was very nice. Even at the end of the visit the doctor that will see David on Monday came in to introduce herself and look at Dave so she would know if there was any significant change in appearance over the weekend. It is an amazing team of medical individuals and support, the best of the best.
During the clinic visit the doctors and nurses agreed that he is a little fluid logged so they upped his lasiks pill (the diuretic) so that they can get some more fluid off of him and quickly. This is pretty common coming right out of the hospital so they are going to keep an eye on it. They also have referred him to a Stanford Ear Nose and Throat Specialist for the tongue issue since it is getting worse and not better. No one can figure out what is going on so they are considering all sources at this time. Other then that the visit went pretty well and there weren't any major concerns.
He also had an echo done, some xrays, and the first biopsy of his heart done all of which we will get a call tomorrow with the results. So needless to say he is wore out! He is starting to feel a little down in the mouth, which he has been back and forth with since the surgery anyways, but it is getting a tad worse. He is dealing with a lot of questions and life changing stuff and it has been hard for him to handle. More so then that he told me last night while we were eating dinner that he didn't realize until just this week how much he relied on the routine and the structure of the Navy and he is really worried about not having that. His days are open ended and that frightens him a bit, so that is my new project because in that same respect trying to get him to do anything is hard because he is a little depressed as well. Everything about this is going to take some serious adjusting and tweaking, but we have the Lord on our side and that is the only answer!
So prayers tonight for peaceful sleep for my sweet boy and a calm heart that knowing the first week of anything new is hard. Next week will be better and eventually we will get our own "routine" down even if it is just silly stuff! Tomorrow we are back at the hospital for 5 hours so that he can get a special medicine through IV, so he needs good sleep tonight.
First was lab work which was no big deal but of course they couldn't find a good vein so they had to poke him 3 times before finally getting a good draw. Then we went up for our clinic visit, and I just have to say that in each phase of this remarkable journey I get nervous when we are going to be seen by a new group of people. Well, once again my worries were at once put to ease because everyone was terrific from the get go. They were all very familiar with us and knew everything about us, there weren't any gaps or history to go over which was very nice. Even at the end of the visit the doctor that will see David on Monday came in to introduce herself and look at Dave so she would know if there was any significant change in appearance over the weekend. It is an amazing team of medical individuals and support, the best of the best.
During the clinic visit the doctors and nurses agreed that he is a little fluid logged so they upped his lasiks pill (the diuretic) so that they can get some more fluid off of him and quickly. This is pretty common coming right out of the hospital so they are going to keep an eye on it. They also have referred him to a Stanford Ear Nose and Throat Specialist for the tongue issue since it is getting worse and not better. No one can figure out what is going on so they are considering all sources at this time. Other then that the visit went pretty well and there weren't any major concerns.
He also had an echo done, some xrays, and the first biopsy of his heart done all of which we will get a call tomorrow with the results. So needless to say he is wore out! He is starting to feel a little down in the mouth, which he has been back and forth with since the surgery anyways, but it is getting a tad worse. He is dealing with a lot of questions and life changing stuff and it has been hard for him to handle. More so then that he told me last night while we were eating dinner that he didn't realize until just this week how much he relied on the routine and the structure of the Navy and he is really worried about not having that. His days are open ended and that frightens him a bit, so that is my new project because in that same respect trying to get him to do anything is hard because he is a little depressed as well. Everything about this is going to take some serious adjusting and tweaking, but we have the Lord on our side and that is the only answer!
So prayers tonight for peaceful sleep for my sweet boy and a calm heart that knowing the first week of anything new is hard. Next week will be better and eventually we will get our own "routine" down even if it is just silly stuff! Tomorrow we are back at the hospital for 5 hours so that he can get a special medicine through IV, so he needs good sleep tonight.
Wednesday, March 25, 2009
March 25th, 2009
Life can be blissfully sweet sometimes. I personally love it when things just fall into place in a really lovely pattern. I have said before how this blog has become almost like a personal journal to me and with that I have had to almost be careful how personal I get with my comments because sometimes I forget that the whole world can see what I am writing:) But right now I am so happy that I don't care what I write or what I say! HAHA I just want to scream it from the mountain tops, or at the very least the top floor of my hotel room!
David is taking a nap and I am supposed to be working on some projects on the computer but blogging seemed so much more appealing right now! I am glad he is resting, he hasn't been sleeping well at night and last night we had a minor scare. Jolting me back to the fact that we really aren't totally out of the woods and we never really will be. But that is ok, we have the mighty healer on our side and I am good with that. David's ankles started to swell up last night and they kept swelling as the night wore on and pretty soon he just didn't feel good at all and he no longer felt good enough to sit in a chair, he had to lay down. He and my brother both said they wanted me to call the doctor, this was at about 10pm last night. The doctor was fantastic on the phone, she had me take his vitals (b/p, temp. weight) all were fine so she said just to have him stay off his feet, stay away from sodium and high liquids, and mainly just rest until they see him Thursday. It was a relief but again a reminder that we still have to be very careful with his precious life that we have been given a second chance with.
Today my sister Sarah came down to visit with him and while he and my brother were busy on their computers she suggested that she and I go across the street and get lunch. At first I was hesitant, but I am so glad that I did it. What a blessing it was to get out in the fresh air and really have a nice hour outside of the hotel room and in a non hospital environment with another being that wasn't hospital personnel! Plus I got some sister time which I don't get very often, it was truly a special hour for me and I think she knew I needed it. I felt 100% better after that and much more recharged! I can now take on the world, just give me a cape and a tiara!
Shortly after that Doug's dad and sister arrived again for one last visit before heading back out of town. David enjoyed visiting with both of them, but was a lot more tired today. I know they were both glad to see him and I can only imagine how hard it has been for them to be so far away this whole time, so I am glad that they finally got to spend some time with him. After they left my brother Ricky also decided that his visit must also come to an end, so he packed up and left as well.
So now it is just the two of us. I am glad he is resting up, his body needs it. Tomorrow is our first "clinic" day, and the first day he will be poked and prodded. We have labs at 8am, clinic at 9am, then xrays, an echo, and his first biopsy to get done. Then on Friday we have to go back for him to get a special IV drug infusion that will take between 4-5 hours. So we have busy days ahead of us.
This is a picture of David, his Aunt Annette (Doug's sister), and his Grandpa Allen (Doug's dad)
David is taking a nap and I am supposed to be working on some projects on the computer but blogging seemed so much more appealing right now! I am glad he is resting, he hasn't been sleeping well at night and last night we had a minor scare. Jolting me back to the fact that we really aren't totally out of the woods and we never really will be. But that is ok, we have the mighty healer on our side and I am good with that. David's ankles started to swell up last night and they kept swelling as the night wore on and pretty soon he just didn't feel good at all and he no longer felt good enough to sit in a chair, he had to lay down. He and my brother both said they wanted me to call the doctor, this was at about 10pm last night. The doctor was fantastic on the phone, she had me take his vitals (b/p, temp. weight) all were fine so she said just to have him stay off his feet, stay away from sodium and high liquids, and mainly just rest until they see him Thursday. It was a relief but again a reminder that we still have to be very careful with his precious life that we have been given a second chance with.
Today my sister Sarah came down to visit with him and while he and my brother were busy on their computers she suggested that she and I go across the street and get lunch. At first I was hesitant, but I am so glad that I did it. What a blessing it was to get out in the fresh air and really have a nice hour outside of the hotel room and in a non hospital environment with another being that wasn't hospital personnel! Plus I got some sister time which I don't get very often, it was truly a special hour for me and I think she knew I needed it. I felt 100% better after that and much more recharged! I can now take on the world, just give me a cape and a tiara!
Shortly after that Doug's dad and sister arrived again for one last visit before heading back out of town. David enjoyed visiting with both of them, but was a lot more tired today. I know they were both glad to see him and I can only imagine how hard it has been for them to be so far away this whole time, so I am glad that they finally got to spend some time with him. After they left my brother Ricky also decided that his visit must also come to an end, so he packed up and left as well.
So now it is just the two of us. I am glad he is resting up, his body needs it. Tomorrow is our first "clinic" day, and the first day he will be poked and prodded. We have labs at 8am, clinic at 9am, then xrays, an echo, and his first biopsy to get done. Then on Friday we have to go back for him to get a special IV drug infusion that will take between 4-5 hours. So we have busy days ahead of us.
This is a picture of David, his Aunt Annette (Doug's sister), and his Grandpa Allen (Doug's dad)Tuesday, March 24, 2009
The Blog
Fellow blog readers and followers.... do not worry I will not be ending the blog any time soon! I know several have emailed, called, and left comments worrying that I will just cut you off ending it without any notice. Do not worry, I would never do that to you. I know how attached you all have gotten to David and our journey is not over in the least. Plus this has become a journal of sorts for me so I intend to keep it going for the months we are still living near Stanford at least, possibly longer. Only time will tell.... we have no idea where this journey will take us. Stay tuned.....
A sincere thank you to the Navy
Senior Chief James Pitts, Dave, and Admiral Browne
On Saturday and Admiral from the Navy came to San Jose and Senior Chief Pitts brought him to see David. This was a really neat thing and I am truly sorry that I missed it, but thankfully my Aunt Susan took some pictures of the event. While I am on the subject of the Navy, I have to get on my soapbox here for a minute. In today's media sometimes all we hear about is how the military makes some really bad choices and what bad outcomes that has for us. But for my family they have just been wonderful. Not one time have they let us down at all in the last 3 months. The entire Navy has been supportive and behind us every step of the way. Just the fact that actual people ( Like commanding officers) from David's ship have called Doug and I and have offered their support and condolences is more then I ever imagined. Then when Dave received that awesome video from all of his ship mates, that was very cool. Even more recently he received a challenge coin from the Commador of his Squadron, which we are told is even cooler thing.
Financially they have taken care of all of David's medical bills, David is still earning a paycheck, and the fact that they have helped Doug and I out with a hotel and meals is just incredible. We couldn't have done half of what we have been able to do if it wasn't for the Navy. It would have been very difficult to have stayed by my son's side the last few months if hadn't of been for them. Sure, they haven't paid for everything, but has made life a whole lot easier on all of us and one less thing to worry about.
On top of that they assigned us a personal liaison from the Safe Harbor team, Senior Chief James Pitts. I can't begin to tell you how incredible this man has been. He has come by every single day to check on David and most of the time it has been on his own time and when I have said that he really didn't need to his reply was, "ship mates stick together, ma'am". He has impressed me through and through. The day of David's heart transplant he took the day off and sat in his street clothes with the rest of us and waited the ENTIRE time David was in surgery. My entire family and crew was so grateful for the Navy representation and support on that day and several went up to him and said so. He has been a very special man throughout this experience and has become a good friend to both Dave and I. One that we will hold dear to our hearts forever, thank you Jim for everything. You will never know how much we have truly appreciated everything you have done for us.
So I am stepping off of my soap box now, just keep this story in mind next time you hear something negative on the news about our military. Because for this family they have truly been life saving.
March 24th, 2009
Finally I am posting!! My STUPID laptop, sorry Kiana, but it has not been working, so I have been without a computer until today when I finally begged Dave to borrow his. Soo.... we bailed out of the hospital at 2pm yesterday and it was fantastic!! We went through Taco Bell first thing upon David's request and then headed to the homtel, he was so happy. He couldn't stop smiling! He instantly started up his computer and started gaming with his friends something he has been missing for the last 3 months. Our friend Jeff LaMonte happened to be in the area for meetings last night so he stopped by to visit with Dave and then we ordered pizza for dinner. Dave made up his own pizza which totally disgusted me, shrimp, artichoke hearts, and Canadian bacon. Then later in the evening my brother Rick drove up and he is going to spend the week with us and build David's fancy new computer.
Today Doug's dad is here visiting from Florida and so is Doug's sister, Annette, visiting from Colorado. So David is having a jam packed day! He will be tired tonight. But he has requested my famous chicken tacos for dinner tonight, so that is what I am making him. He has been looking forward to those for months.
I also hung up a surprise for him at the homtel yesterday, his little sister's class made him a huge poster and I hung it up in the entry of our new "house" for him to see everyday. Plus I enjoy seeing it and I know that it will make me smile as well as him!
David enjoying his first real meal outside of the hospital!
His disgusting pizza, but he said that it was an "awesome" combination.
What a great poster!
Today Doug's dad is here visiting from Florida and so is Doug's sister, Annette, visiting from Colorado. So David is having a jam packed day! He will be tired tonight. But he has requested my famous chicken tacos for dinner tonight, so that is what I am making him. He has been looking forward to those for months.
I also hung up a surprise for him at the homtel yesterday, his little sister's class made him a huge poster and I hung it up in the entry of our new "house" for him to see everyday. Plus I enjoy seeing it and I know that it will make me smile as well as him!
David enjoying his first real meal outside of the hospital!
His disgusting pizza, but he said that it was an "awesome" combination.
What a great poster!Monday, March 23, 2009
March 23rd, 2009
We are sitting here anxiously awaiting to get out of the hospital!! It will be today we are told, and if anyone has ever been in the hospital you know that the words "you get to go home today" translates into "whenever we get around to letting you out". David is bouncing off the walls he is so excited.... he has had to have two infusions of magnesium through IV this morning so he has been tied to the bed all morning and that is not helping his restlessness! I just got back from the pharmacy and picked up his 24 bottles of prescriptions and we just went over all of them with the pharmacist yet again. We are once again so thankful that David was in the Navy because when I went to pick up his medicine there was a zero co pay for all the meds, and we only had to pay for the 7 over the counter drugs. The pharmacist told us that his meds are a retail cost of $7000 a month!
We are waiting for some final instructions from Christine, the transplant nurse, Heather, the dietitian, and Paula, our social worker and then we are SOOO out of here!!
Yesterday afternoon my Aunt Susan and brother Matt moved me totally out of the studio room and up into the 2 bedroom hotel room. Thank you so much you two!! It was so nice to get there last night and not have to worry about moving all my stuff! So last night after I arrived I got my stuff all settled and then got David's stuff all settled in his room, plus some surprises:) Then went to the grocery store and set up our little "homtel" so we can be comfortable for the next 3 months. He and I are both worried about not having a routine or structure over the next few months, since both of us are quite used to that in our everyday lives, so that is something we are going to have to work on. But for a few weeks I think we are both just going to take a big breath and CHILL! Especially him! He needs to just relax and really enjoy his second chance at life that God has given him.
We are waiting for some final instructions from Christine, the transplant nurse, Heather, the dietitian, and Paula, our social worker and then we are SOOO out of here!!
Yesterday afternoon my Aunt Susan and brother Matt moved me totally out of the studio room and up into the 2 bedroom hotel room. Thank you so much you two!! It was so nice to get there last night and not have to worry about moving all my stuff! So last night after I arrived I got my stuff all settled and then got David's stuff all settled in his room, plus some surprises:) Then went to the grocery store and set up our little "homtel" so we can be comfortable for the next 3 months. He and I are both worried about not having a routine or structure over the next few months, since both of us are quite used to that in our everyday lives, so that is something we are going to have to work on. But for a few weeks I think we are both just going to take a big breath and CHILL! Especially him! He needs to just relax and really enjoy his second chance at life that God has given him.
Saturday, March 21, 2009
March 21st. 2009
I just spent 40 min talking with David via the Internet on Skype, I praise the Lord for modern technology. He was wondering what I was up to and I happened to be folding laundry when the call came through and it was a nice break. We chatted for awhile and then both decided that we were going to have to get off the computer and actually do something, he needed to try and sleep and I needed to try and get life in order around the house. He is getting very excited about getting out of the hospital. More so because his Uncle Ricky is building him a fancy computer and he told Dave that he is going to come and stay with us this week at the hotel to visit him and help get it all going for him. So Dave is super excited about this week, lets hope all goes as planned!!
Last Thursday I took a picture of David sorting out his 6pm pills because it is just amazing what he has to learn to do and the mere fact that he is doing it is awe inspiring! I can barely remember to take 2 in the morning, much less what he has to take 5x a day! So that is what some of these pictures are!
Then on Friday he received a very special gift from our friends Kurt and Sondra Keckley in Bakersfield. Their church made him a prayer quilt, which gave us chills when he opened it on Friday. They made it just for him and then during a church service members of the congregation tied the knots of the quilt and said a prayer for him while they did it. This is a very special quilt and was made with love and blessings from above. David was honored and quite impressed with it, he said he can't wait to lounge around with it at the "homtel".
This is just one dose, his 6pm dose, those papers are the time schedule and his cheat sheet of what to take and when. The box is the "magic" box that holds all of his meds. He is a trooper, he also has to take a liquid that he says is really nasty! Better then the alternative though!!
This is the quilt, he was very happy that it was long enough to cover his whole body, most don't realize that he is almost 6'4! What a special gift! He will treasure it always!!
Last Thursday I took a picture of David sorting out his 6pm pills because it is just amazing what he has to learn to do and the mere fact that he is doing it is awe inspiring! I can barely remember to take 2 in the morning, much less what he has to take 5x a day! So that is what some of these pictures are!
Then on Friday he received a very special gift from our friends Kurt and Sondra Keckley in Bakersfield. Their church made him a prayer quilt, which gave us chills when he opened it on Friday. They made it just for him and then during a church service members of the congregation tied the knots of the quilt and said a prayer for him while they did it. This is a very special quilt and was made with love and blessings from above. David was honored and quite impressed with it, he said he can't wait to lounge around with it at the "homtel".
This is just one dose, his 6pm dose, those papers are the time schedule and his cheat sheet of what to take and when. The box is the "magic" box that holds all of his meds. He is a trooper, he also has to take a liquid that he says is really nasty! Better then the alternative though!!
This is the quilt, he was very happy that it was long enough to cover his whole body, most don't realize that he is almost 6'4! What a special gift! He will treasure it always!!Friday, March 20, 2009
March 20th, 2009
What a nice day today has been! Last night my Aunt Susan drove up from Arroyo Grande to spend the weekend with David. I loved spending some one on one time with her last night and she was excited to see Dave as well. My good friend Apryl talked to Doug and I about how we really needed to spend some time with each other and we needed to spend some time together with the little kids. She told us how it is really easy to let the "sickness" take over our lives. We haven't been all together at home since before all this happened, so when my aunt arrived for the visit she suggested that Doug stay at home this weekend so we could do just that. David liked the idea since he and my aunt get along well and my brother Matt was also driving up for the weekend, and Doug liked the idea as well. So this is our first weekend doing something VERY different since this all began! We shall see how it works out! At least we get to talk to David when we want to, that makes a big difference. When I left today he was getting a foot massage from his Aunt Susan and was in heaven.
I had to take the care giver class today with the transplant nurse, and it was a lot of information on how much David's life really is going to be different from here on out. Especially these next 3 months and how careful we have to be with a lot of things. Things that I would never have even thought of, it was a really informative session and lasted about 2 hours. Then I hightailed it out of there so I could get to John's band concert in time so I wouldn't be voted the worst mom in the world! HAHA
David is getting VERY antsy on getting out of the hospital and I really hope that he can get out on Monday. His tongue was worse today, and that had everyone scratching their heads again, but that is minor in the big scheme of things. His white blood count has also been high each day, but he feels fine so they are watching that just in case. So we are really hoping for a Monday release, although she did tell us that it will be LATE Monday if it is Monday.
I am happy to be home with my kids and Doug, and happy that I get to spend a weekend at home with all three of them. We have a lot of fun things planned and I know that Dave is in really good hands!
I had to take the care giver class today with the transplant nurse, and it was a lot of information on how much David's life really is going to be different from here on out. Especially these next 3 months and how careful we have to be with a lot of things. Things that I would never have even thought of, it was a really informative session and lasted about 2 hours. Then I hightailed it out of there so I could get to John's band concert in time so I wouldn't be voted the worst mom in the world! HAHA
David is getting VERY antsy on getting out of the hospital and I really hope that he can get out on Monday. His tongue was worse today, and that had everyone scratching their heads again, but that is minor in the big scheme of things. His white blood count has also been high each day, but he feels fine so they are watching that just in case. So we are really hoping for a Monday release, although she did tell us that it will be LATE Monday if it is Monday.
I am happy to be home with my kids and Doug, and happy that I get to spend a weekend at home with all three of them. We have a lot of fun things planned and I know that Dave is in really good hands!
Another Special Thank You
At this time Doug and I would like to publicly thank Doug's mother for all she has done for us during the last two months. She made sure that she got us to Hawaii very quickly when the doctors called, and helped us out when we got there. She also made sure that she was here waiting for Dave at Stanford when he arrived since Doug and I couldn't get a plane out from Hawaii until the day after he left. Then more recently she painted a painting for the staff here at the hospital thanking them for all that they have done and that was nice of her as well. Even though she lives far away she has done several things that have needed to be mentioned and we have not done so, we apologize for that. Doug's dad that lives in Florida also helped us out while we were in Hawaii and we also thank him for that as well. I also appreciate that his wife Sue has sent David a card every week to make him laugh. And just last week she sent me a beautiful bracelet as a thank you for all that I have done for David, so thank you Sue, we really appreciate it.
Thursday, March 19, 2009
A Proud Moment
Today has been full of proud moments for me, I tell you what!! So first Dave has been taking his own meds with supervision with nurse today and I am really proud of him because getting all those medications down and when to take them is going to take a lot of work. I know I was really flabbergasted when I saw the list and all the different times of day that he has to take them, so for him to jump right in today and do it just made my heart swell. Of course he told me this was a really good excuse for him to get a IPHONE because you can set it to alarm him when to take the pills and which ones to take. Once a 19 year old always a 19 year old..... I guess he does deserve it after all of this! HAHA
Then we had someone from the Transplant Research Center come in and talk to us about all the different research studies that Stanford does. They do numerous studies every year on how the effects of transplants work on different people and right now they are working on one with how the donor heart adapts to the new body. They asked if Dave would like to participate in it, and Dave jumped right in. He told the doctor that if it could help them learn how to help others he was all for it. They told him not to be surprised if others came and asked for his help in other studies. It was another proud moment for me because he wasn't standoffish about it all he truly wanted to do his part in medical advancement with what happened to him. Without a new heart David would have died so for him to know that and accept that and be willing to help find more answers really says a lot about him
Now for the best part, Paula our social worker, just came in and asked for the blog site address for another pre transplant patient. That is when Dave offered to talk to that patient! I about fell over in shock! Paula told him that would be terrific! Dave said that he wants to tell him that everything would be ok and just talk to him for a bit.
I am really proud of him, he is such a good kid.
Then we had someone from the Transplant Research Center come in and talk to us about all the different research studies that Stanford does. They do numerous studies every year on how the effects of transplants work on different people and right now they are working on one with how the donor heart adapts to the new body. They asked if Dave would like to participate in it, and Dave jumped right in. He told the doctor that if it could help them learn how to help others he was all for it. They told him not to be surprised if others came and asked for his help in other studies. It was another proud moment for me because he wasn't standoffish about it all he truly wanted to do his part in medical advancement with what happened to him. Without a new heart David would have died so for him to know that and accept that and be willing to help find more answers really says a lot about him
Now for the best part, Paula our social worker, just came in and asked for the blog site address for another pre transplant patient. That is when Dave offered to talk to that patient! I about fell over in shock! Paula told him that would be terrific! Dave said that he wants to tell him that everything would be ok and just talk to him for a bit.
I am really proud of him, he is such a good kid.
New Address and Such
Hi there all!
As of Monday we will more then likely be out of the hospital.... insert huge applause and lots of yelling here...... yes it will be a joyous occasion. Even though we can't go home quite yet, we are still all very excited that we will not be permanent residences of Stanford Hospital anymore, but we will be residences of Palo Alto for the next 3 months.
David has a lot that he still has to go through and it is still a long journey ahead of us. We have to come back to the hospital every Monday and Thursday pretty much all day long for heart biopsy's to make sure that he isn't rejecting and do lab work. These tests will take most of the day, he also signed up today to be part of a research study on donor hearts, and I was really proud of him for deciding to do that. He also was given the list of medications that he is now on and it is a sheet that is 4 pages long and it is over 25 pills that he has to take at 4 different times of the day. Life is not going to be "easy" over the next few months, but we can handle anything at this point.
He is getting restless right now, time seems to be dragging by for him since he is getting so close to getting out of here. I too am thinking the same thing, we are so close to the end of the hospital stay but yet it seems so far away. Time is literally standing still for the both of us right now. He told me today he really wants to feel normal again, he feels better each day, but he longs for the day when this is all totally over.
At this point I would ask that you no longer send anything to the Standford address, I will update the side bar of the blog with the hotel address if you would like to mail him him something. He still loves getting all the cards and goodies, so I want to make sure you all have the correct address!
As of Monday we will more then likely be out of the hospital.... insert huge applause and lots of yelling here...... yes it will be a joyous occasion. Even though we can't go home quite yet, we are still all very excited that we will not be permanent residences of Stanford Hospital anymore, but we will be residences of Palo Alto for the next 3 months.
David has a lot that he still has to go through and it is still a long journey ahead of us. We have to come back to the hospital every Monday and Thursday pretty much all day long for heart biopsy's to make sure that he isn't rejecting and do lab work. These tests will take most of the day, he also signed up today to be part of a research study on donor hearts, and I was really proud of him for deciding to do that. He also was given the list of medications that he is now on and it is a sheet that is 4 pages long and it is over 25 pills that he has to take at 4 different times of the day. Life is not going to be "easy" over the next few months, but we can handle anything at this point.
He is getting restless right now, time seems to be dragging by for him since he is getting so close to getting out of here. I too am thinking the same thing, we are so close to the end of the hospital stay but yet it seems so far away. Time is literally standing still for the both of us right now. He told me today he really wants to feel normal again, he feels better each day, but he longs for the day when this is all totally over.
At this point I would ask that you no longer send anything to the Standford address, I will update the side bar of the blog with the hotel address if you would like to mail him him something. He still loves getting all the cards and goodies, so I want to make sure you all have the correct address!
Wednesday, March 18, 2009
A special thanks
As I was doing laundry just now, part of which was all of David's new clothes :), I was overwhelmed with gratitude. I got to thinking of all the people around the globe that have helped us out with so many things. Cards, emails, goodies to keep Dave occupied, food, monetary donations, support, love, and so much more. I overwhelmed right now with the amount of Gods love that is out there, people say its not and that we live in an angry world, but we truly do not. We live in a world filled with loving, gentle people, that truly want to do the right thing, even if that means just popping a card in the mail to cheer my son up, even if they don't know him. So thank you.
A very big thank you to my sister, Sarah, today for taking time out of her visit with David to go shopping for him so he could feel normal today. It did so much for his mental capacity as well as his progress in getting better. I am truly thankful for you doing that, and doing it without a moments hesitation, it really meant a lot to the both of us. It was right up your alley I know, but it was a sweet and special thing to do.
At this time I would also like to thank the following people:
My mom, Debra VanDyke
Jacque Ohl-Trilca
Monica LaMonte
My dad, Fred Rhodes
My sister, Sarah Frazier
My brother, Rick Rhodes
Kurt and Sondra Keckley
Lora White
Lacey Boggess
Heidi Nelsen
Apryl VanGroningen
Kevin Boesler
Senior Chief James Pitts
These were all the people that sat by our side the day of the heart transplant, Doug and I have talked about that day several times and we both agree that we would NEVER have made it through those 7 long hours from the time they took him until they finished without any of you. Just having you all there was an extreme peace of mind and when we all prayed together at the end is something I will never ever forget. Some of you drove all night to get to us and that kind of faithfulness will never be forgotten. We love you all.
A very big thank you to my sister, Sarah, today for taking time out of her visit with David to go shopping for him so he could feel normal today. It did so much for his mental capacity as well as his progress in getting better. I am truly thankful for you doing that, and doing it without a moments hesitation, it really meant a lot to the both of us. It was right up your alley I know, but it was a sweet and special thing to do.
At this time I would also like to thank the following people:
My mom, Debra VanDyke
Jacque Ohl-Trilca
Monica LaMonte
My dad, Fred Rhodes
My sister, Sarah Frazier
My brother, Rick Rhodes
Kurt and Sondra Keckley
Lora White
Lacey Boggess
Heidi Nelsen
Apryl VanGroningen
Kevin Boesler
Senior Chief James Pitts
These were all the people that sat by our side the day of the heart transplant, Doug and I have talked about that day several times and we both agree that we would NEVER have made it through those 7 long hours from the time they took him until they finished without any of you. Just having you all there was an extreme peace of mind and when we all prayed together at the end is something I will never ever forget. Some of you drove all night to get to us and that kind of faithfulness will never be forgotten. We love you all.
March 18th, 2009
I just am amazed at the strides that this man is making! He has it in his mind to get out of here and he is intent on doing just that! He really wanted to get dressed in some real clothes and they told him yesterday that would be possible, so we sent Aunt Sarah, the fashion queen, on a mission to get him some new clothes. He needed new clothes because he has lost 35 pounds since being in the hospital and none of his old clothes would fit! So Auntie Sarah and Uncle Chad took off this morning to the mall and totally outfitted him in some very stylish clothes head to toe! He was so excited, and they even came back with California Pizza Kitchen for lunch. He was a very happy camper! So after a yummy lunch we all went downstairs to enjoy some music in the atrium and then a walk outside in the garden. This was the first time Dave got to go outside by himself without any nurses, and without any type of monitoring equipment or an IV pole. He was so excited and felt very proud of himself today.
Here are just a few pics of Dave actually feeling "human" for the first time in a long time. He is hoping to get a shower today and wants to wash his hair, as gross as it sounds he hasn't been able to wash his hair once since all of this has started, so he is really looking forward to that. Just a little while longer and he will be released from the hospital. They are thinking either Monday or Tuesday, at that time Dave and I will become long term residence's of Palo Alto for the next 3 months or so! We are both looking forward to him being to sleep in a real bed and he can't wait for me to cook some meals for him again. His first meal request..... of course..... Chicken Tacos.
David sitting outside by the gardens in "real" clothes. He loved sitting outside today and just chatting and laughing with his aunts and uncles. His two uncles crack him up all the time, it was good to see him laughing and having a good time.
David, Grandpa Fred, Sarah, Chad, and Ricky while listening to the live music downstairs. For those of who you don't know this is my dad, my sister, her husband, and my baby brother.
Here are just a few pics of Dave actually feeling "human" for the first time in a long time. He is hoping to get a shower today and wants to wash his hair, as gross as it sounds he hasn't been able to wash his hair once since all of this has started, so he is really looking forward to that. Just a little while longer and he will be released from the hospital. They are thinking either Monday or Tuesday, at that time Dave and I will become long term residence's of Palo Alto for the next 3 months or so! We are both looking forward to him being to sleep in a real bed and he can't wait for me to cook some meals for him again. His first meal request..... of course..... Chicken Tacos.
David sitting outside by the gardens in "real" clothes. He loved sitting outside today and just chatting and laughing with his aunts and uncles. His two uncles crack him up all the time, it was good to see him laughing and having a good time.
David, Grandpa Fred, Sarah, Chad, and Ricky while listening to the live music downstairs. For those of who you don't know this is my dad, my sister, her husband, and my baby brother.Tuesday, March 17, 2009
March 17th, 2009
Rejoice in the day the Lord has made and be glad in it!! Dave has been moved out of the ICU!! YES!! I am soooooo happy and so is he!!!!!!!! He had such a great day today, his mental state is so great right now and he is so ready to move on to the next stage of his life. The medical team seems to think he will be released from the hospital next Monday or Tuesday, and he is more then ready. We had such a great day today, I can't even put into words the wonderful day we had together. He walked around the unit a couple of times today and then Julie came in and took him for a field trip in the wheel chair so he could go outside. He loved going outside and getting fresh air, and he almost cried while we were out there that is how good it felt to him.
Once we got back from our outings I pulled my chair up to his bed and started chit chatting with him to help him get his mind off the waiting for his new room. Boy the Lord took over at that point in the day, let me tell you. For the next 4 hours there was some heavy conversation between that boy and me, and some memories were made that I will never forget. We talked and talked about things and life and just wonderful stuff. I was once again reminded of how special he is and how great his life has been and how blessed I have been to be a part of it. We both really shared hopes, fears, dreams, and funny stories. I put some stuff out there for him and he did the same for me and I think that we both are really going to grow from today. It was such a special day, one that I will hold forever in my heart.
I just talked to him, from his own room I might add, and he was so happy tonight. He is such a survivor, a strong believer in Christ, and just a great person. I am so proud of him and who he has become in this world and how tough he has been through all of this. I also have to say how proud I am of my husband for raising such a fine young man and being the father he has been to David and doing it by himself for the most part for the early years of Davids life. He is also a survivor of sorts himself, first by being a single father, and now by having to deal with his son almost dying. Doug has had to be a single father once again these past few months as well as handle the emotions of dealing with a dying son and he has done it with such dignity and humility. He is such a strong wonderful man, and I am so proud that he is my husband and father of my children.
Below are a few pictures that my mother in law took when she was here visiting this past weekend as well as some that I took today when we were out on our field trip in the wheel chair. The pretty lady in the pictures with David is our wonderful friend, Julie, she has been SO wonderful through this journey. I will truly miss her, and Dave told me today he will as well. Also the mask he is wearing is what he will have to wear outside of the hotel or hospital for the next 3 months to protect him from germs and spores in the air. The nurses are working on getting him a different color, but for today all they had was pink. He didn't care, he just wanted to go outside!
Also, he does have his own phone in his private room, but we are only giving it out to select people, so please be respectful of that. He still is having the problem with his tongue so it is hard for him to talk, so if you do get his phone # please remember that and don't keep him on the phone for long.
This is David's incision, one of them anyways, he also has one on the side where they put in the pump a month ago, but this is the heart transplant incision. It goes up about 3 more inches but this is a pretty good picture. I told him it will probably disappear by the time he is 25 or 30.
David sporting his "Darth" mask outside for the first time since the surgery. He loved being out in the fresh air and it was such a beautiful day.
I took this picture just as we got outside, I loved this picture of him just kicking back and really enjoying the outside and taking in all the outside air. He was in a state of bliss, and looked so relaxed right here.
Julie is telling him to take it slow here, he wanted to take a walk up a little hill and she was letting him know why that might not be such a good idea! He loves her so much, he really does. She has been so fabulous to us, I am going to miss her, have I mentioned that?? :)
Typical Dave, no smile.... HAHA, we were both taken a little off guard here, but it was a sweet picture. I can't wait to take this boy home! We were making all sorts of plans today!!
Once we got back from our outings I pulled my chair up to his bed and started chit chatting with him to help him get his mind off the waiting for his new room. Boy the Lord took over at that point in the day, let me tell you. For the next 4 hours there was some heavy conversation between that boy and me, and some memories were made that I will never forget. We talked and talked about things and life and just wonderful stuff. I was once again reminded of how special he is and how great his life has been and how blessed I have been to be a part of it. We both really shared hopes, fears, dreams, and funny stories. I put some stuff out there for him and he did the same for me and I think that we both are really going to grow from today. It was such a special day, one that I will hold forever in my heart.
I just talked to him, from his own room I might add, and he was so happy tonight. He is such a survivor, a strong believer in Christ, and just a great person. I am so proud of him and who he has become in this world and how tough he has been through all of this. I also have to say how proud I am of my husband for raising such a fine young man and being the father he has been to David and doing it by himself for the most part for the early years of Davids life. He is also a survivor of sorts himself, first by being a single father, and now by having to deal with his son almost dying. Doug has had to be a single father once again these past few months as well as handle the emotions of dealing with a dying son and he has done it with such dignity and humility. He is such a strong wonderful man, and I am so proud that he is my husband and father of my children.
Below are a few pictures that my mother in law took when she was here visiting this past weekend as well as some that I took today when we were out on our field trip in the wheel chair. The pretty lady in the pictures with David is our wonderful friend, Julie, she has been SO wonderful through this journey. I will truly miss her, and Dave told me today he will as well. Also the mask he is wearing is what he will have to wear outside of the hotel or hospital for the next 3 months to protect him from germs and spores in the air. The nurses are working on getting him a different color, but for today all they had was pink. He didn't care, he just wanted to go outside!
Also, he does have his own phone in his private room, but we are only giving it out to select people, so please be respectful of that. He still is having the problem with his tongue so it is hard for him to talk, so if you do get his phone # please remember that and don't keep him on the phone for long.
This is David's incision, one of them anyways, he also has one on the side where they put in the pump a month ago, but this is the heart transplant incision. It goes up about 3 more inches but this is a pretty good picture. I told him it will probably disappear by the time he is 25 or 30.
David sporting his "Darth" mask outside for the first time since the surgery. He loved being out in the fresh air and it was such a beautiful day.
I took this picture just as we got outside, I loved this picture of him just kicking back and really enjoying the outside and taking in all the outside air. He was in a state of bliss, and looked so relaxed right here.
Julie is telling him to take it slow here, he wanted to take a walk up a little hill and she was letting him know why that might not be such a good idea! He loves her so much, he really does. She has been so fabulous to us, I am going to miss her, have I mentioned that?? :)
Typical Dave, no smile.... HAHA, we were both taken a little off guard here, but it was a sweet picture. I can't wait to take this boy home! We were making all sorts of plans today!!Monday, March 16, 2009
March 16th, 2009
I am one happy mommy today!! David is doing sooo much better! The CT Scan came back normal so that was a big relief, he has been eating today, not much but a little, no more belly aches, and he feels better. They took out all 3 chest tubes today, and I even got the doctor to take out his foley cath, so he was a happy guy this afternoon. He ate some cereal for breakfast, a grilled cheese with some soup for lunch, and we ordered him up some mac and cheese for dinner. Plus Dr. Tony wants him to drink some protein shakes as well. His mind set has been much better too, he is ready to start roaring out of there. He even requested that Julie take him out for a walk today, but she told him he still wasn't ready for that maybe tomorrow or the next day. However he eats all of his meals sitting up in a chair and he is starting to feel better overall. He still has the tongue problem and the doctors think it could be an allergic reaction to one of the meds so they are messing around with that and trying to get that in order a bit. But they promised me today that he wouldn't become the first "heart transplant freak show" and they will get that tongue problem solved soon. We hope to be out of the ICU by Wednesday, which would be fantastic.
Today was a good day, and I needed a good day, I sorta had a rough emotional night last night and so this was good news!!
Today was a good day, and I needed a good day, I sorta had a rough emotional night last night and so this was good news!!
Sunday, March 15, 2009
My Funny Guy
I was just recently pursued to join Facebook, so as I was going through photos to post on that site I found this picture. I just started laughing and smiling and then I sent it to Costco to be printed so I can look at it everyday and be reminded that this silly boy will be this way once again. This picture was taken when he was home for Thanksgiving on leave. He only had about 3 days leave time with us at that time and we loved every minute of it, I had just had surgery and was feeling pretty crummy and so Dave took the little kids and entertained them for awhile so I could rest. While he was entertaining them he "borrowed" my camera and took several silly pictures of the kids and himself. This picture was one of those... I loved it then and I am so glad I stumbled on to it now....... Love you silly boy.....
David Thanksgiving 2008
1 month before getting sick.......
David Thanksgiving 2008
1 month before getting sick.......
Evening Again...
I debated on this posting.... a couple of times I have been asked to retract or edited my postings on the blog because they have either been to "emotional", or given out to much family information. But tonight while I was in the shower I was feeling very heavy with love for my son and feeling this overwhelming need to express it, so here goes. Twice today I felt like I was defending my reasons for loving him and that worried me to a great extent. So just a bit ago I got down on my knees and spent a great deal of time with the Lord and afterwards felt so much peace in my heart.
David has been a part of my life since he was 5 years old, we have not always got along well, that isn't a secret to anyone who has been a part of our life. But truth be told I would like to meet a happy well adjusted "normal" family that gets along with their kids 24/7 all the time! We had growing pains all the while he was growing up and even more so when he was a teenager. At the time I thought we were the only parents ever going through something like that, I remember my mom just laughing at me, and I remember being quite offended. Now I look back and talk with other parents and know that it was all normal kid stuff! We even have other parents of teens coming to us for advice now, it is so weird. And I know that we will be that more prepared for these things when John and Claire reach that age group.
But these past 2 months have been so precious to me with David, I can't even put into words what they have meant to me. He and I have always had this unspoken thing, we were close but still worlds apart, and this tragedy has pulled us together in a way that is totally indescribable. The moments we have shared have been awe inspiring and ones that I will never forget. Even the times when we sit in silence each doing our own thing have been precious to me because we are so comfortable with each other now. We truly have become best friends over the last two months and that is something that I have always wanted for us.
When David joined the Navy he sent us a letter that will remain with me forever, a letter that basically said how much he loved us and was sorry for being that typical teen and making some bad choices. Shortly after that he sent me a beautiful necklace that the Navy puts out just for moms with a letter he wrote for me that I will share with no one. Since that day he and I have become closer each day, and I know now that the Lord was preparing both of us for these days. I didn't realize that until just today, that he was softening our hearts so that we could both be ready for these long months together.
I will never ever forget these moments that I have been able to spend with MY son, it doesn't matter that I didn't give birth to him, he is MINE and MINE alone. We have a long journey still ahead of us but I now look forward to the journey because we can do it together, we have proved that much in just the past two months. He and I make a great team, we keep telling his dad that he is just an added bonus! HAHA
David has been a part of my life since he was 5 years old, we have not always got along well, that isn't a secret to anyone who has been a part of our life. But truth be told I would like to meet a happy well adjusted "normal" family that gets along with their kids 24/7 all the time! We had growing pains all the while he was growing up and even more so when he was a teenager. At the time I thought we were the only parents ever going through something like that, I remember my mom just laughing at me, and I remember being quite offended. Now I look back and talk with other parents and know that it was all normal kid stuff! We even have other parents of teens coming to us for advice now, it is so weird. And I know that we will be that more prepared for these things when John and Claire reach that age group.
But these past 2 months have been so precious to me with David, I can't even put into words what they have meant to me. He and I have always had this unspoken thing, we were close but still worlds apart, and this tragedy has pulled us together in a way that is totally indescribable. The moments we have shared have been awe inspiring and ones that I will never forget. Even the times when we sit in silence each doing our own thing have been precious to me because we are so comfortable with each other now. We truly have become best friends over the last two months and that is something that I have always wanted for us.
When David joined the Navy he sent us a letter that will remain with me forever, a letter that basically said how much he loved us and was sorry for being that typical teen and making some bad choices. Shortly after that he sent me a beautiful necklace that the Navy puts out just for moms with a letter he wrote for me that I will share with no one. Since that day he and I have become closer each day, and I know now that the Lord was preparing both of us for these days. I didn't realize that until just today, that he was softening our hearts so that we could both be ready for these long months together.
I will never ever forget these moments that I have been able to spend with MY son, it doesn't matter that I didn't give birth to him, he is MINE and MINE alone. We have a long journey still ahead of us but I now look forward to the journey because we can do it together, we have proved that much in just the past two months. He and I make a great team, we keep telling his dad that he is just an added bonus! HAHA
March 15th, 2009
We are at the hospital today and the doctors are concerned that Dave is still so sick to his stomach after 4 days. He also is having severe loss of use of his tongue and because of these two things they have ordered a CT SCAN of his brain to see if anything happened during the surgery. He also is not producing blood as well as he should be so they have ordered some blood for him to see if that will help his body work a little bit better. They are trying all sorts of stuff to help him feel better, but the poor guy is just miserable. Doug's mom just got here, so Doug and she are in there with him now. He really just wants to feel better, he says he keeps praying and praying for that. He got really upset and started crying, but luckily we have awesome nurses and they gave him something to calm him down. Because the more anxious and upset he gets the more his body is in pain.
Doug and the little ones will be leaving soon, and so I am praying for my strength and the Lord to guide me through this next week. David is so strong and I can tell his strength is weakening because he is so tired of all of this. It has been so much for him and he just wants to feel better. I know the Lord has a plan for all of us through this and that plan will be revealed at some point to us all.
Doug and the little ones will be leaving soon, and so I am praying for my strength and the Lord to guide me through this next week. David is so strong and I can tell his strength is weakening because he is so tired of all of this. It has been so much for him and he just wants to feel better. I know the Lord has a plan for all of us through this and that plan will be revealed at some point to us all.
Saturday, March 14, 2009
March 14th, 2009
David is not feeling the best today, in mind or body, poor guy. He is really frustrated with how slow his body is healing, when really he is doing better then most in his situation. He still does not feel well enough to eat, the oral meds are making him sick, he is getting heart burn from the anti rejection drugs, his throat is all messed up from the breathing tube, his tongue doesn't seem to be working right, and he is in a lot of pain. At one point today he said that it wasn't worth it he wanted to go back to the way it was before the surgery. He is just really frustrated with not feeling good, WHO CAN BLAME HIM! He was sitting there just flinging his legs up and down in frustration and just yelling out in irritation. Finally he asked for something for the pain and something to help him sleep, the nurse also asked the doctor to order up some Xanex as well for him. He needs to just chill for awhile. I think he honestly expected to wake up feeling like a new person without any side effects and it is frustrating to him that he doesn't feel exactly that way.
I came back early from the hospital with the kids and took a nap, I just can't stop from being exhausted. All of the past weeks without sleep are finally catching up with me! Then I made dinner for the troops and we are spending a quiet evening in our "hometel" as the kids call it. I really hope he feels better tomorrow. I feel so badly for him, all of these emotions and feelings have got to be a lot to take in all at once, plus still not feeling good after everything he has gone through.
I came back early from the hospital with the kids and took a nap, I just can't stop from being exhausted. All of the past weeks without sleep are finally catching up with me! Then I made dinner for the troops and we are spending a quiet evening in our "hometel" as the kids call it. I really hope he feels better tomorrow. I feel so badly for him, all of these emotions and feelings have got to be a lot to take in all at once, plus still not feeling good after everything he has gone through.
Friday, March 13, 2009
March 13th, 2009
On the way through the parking lot this morning to get breakfast the song "The Best Day Ever" kept going through my head from Sponge Bob. Not sure why.... probably because it is the one episode that the kids watch over and over again and I really felt like these days have been the best days ever. So thanks John and Claire for making sure that song has stayed fresh in my brain!!
David was super nauseous all last night and all morning, it finally settled down some around noon today. We are all thinking it is from all the medicines he is on and the anesthesia working out of his body. He had a rough time after the pump was put in so the docs and nurses were prepared a bit for it and had anti nausea meds standing by after surgery, so he should start feeling better soon. Needless to say he wasn't feeling as great as yesterday morning, but he says he can still really feel the difference in his body. We can't believe the color in his face and the dark circles under his eyes are finally starting to disappear. He is in ALOT of pain today so he was on pain killers most of the day and that kept him pretty loopy all day long.
The ICU surprised us by letting John and Claire go in and spend a good quantity of time with him today when they arrived. It was great, he was anxious to see them, and I for one wanted them to see that he was really all right. I know it was a big relief to them to see their brother happy and well again. Someday we will all be home again as a family and I know we are all looking forward to that.
Julie brought in the actual pump that was in David's heart today. She wanted him to see it and touch it, wow was that awesome. The little kids got to see it as well and she explained to them how it worked inside of him. We were able to take pictures of it, and as I look at the pictures I am totally amazed that I actually got to see the little device that kept our son alive for the last month. It was an awesome experience.
We hope tomorrow is a better day for him with his tummy, appetite, and pain. Each day will get better and he is on the home stretch. I reminded him of that today, he needs to stay focused on the end result because we are almost there! And yes I will continue this blog because I know that all of you have become very attached to it and David through it, and I love doing it so I will continue doing it.
David is still requesting no visitors but family at this time, he doesn't feel good and is in a lot of pain, plus we have to be VERY careful of outside visitors bringing in any types of bacteria or infection because right now his body doesn't have any immune system at all. So until further notice no visitors other then family, the hospital also requests this as well. We will let you know when that changes I promise.
These are pictures of the ACTUAL pump that was inside of David the last month. It was surreal holding that in our hands today, let me tell you what. Such a tiny thing with such a powerful mission!!
David was super nauseous all last night and all morning, it finally settled down some around noon today. We are all thinking it is from all the medicines he is on and the anesthesia working out of his body. He had a rough time after the pump was put in so the docs and nurses were prepared a bit for it and had anti nausea meds standing by after surgery, so he should start feeling better soon. Needless to say he wasn't feeling as great as yesterday morning, but he says he can still really feel the difference in his body. We can't believe the color in his face and the dark circles under his eyes are finally starting to disappear. He is in ALOT of pain today so he was on pain killers most of the day and that kept him pretty loopy all day long.
The ICU surprised us by letting John and Claire go in and spend a good quantity of time with him today when they arrived. It was great, he was anxious to see them, and I for one wanted them to see that he was really all right. I know it was a big relief to them to see their brother happy and well again. Someday we will all be home again as a family and I know we are all looking forward to that.
Julie brought in the actual pump that was in David's heart today. She wanted him to see it and touch it, wow was that awesome. The little kids got to see it as well and she explained to them how it worked inside of him. We were able to take pictures of it, and as I look at the pictures I am totally amazed that I actually got to see the little device that kept our son alive for the last month. It was an awesome experience.
We hope tomorrow is a better day for him with his tummy, appetite, and pain. Each day will get better and he is on the home stretch. I reminded him of that today, he needs to stay focused on the end result because we are almost there! And yes I will continue this blog because I know that all of you have become very attached to it and David through it, and I love doing it so I will continue doing it.
David is still requesting no visitors but family at this time, he doesn't feel good and is in a lot of pain, plus we have to be VERY careful of outside visitors bringing in any types of bacteria or infection because right now his body doesn't have any immune system at all. So until further notice no visitors other then family, the hospital also requests this as well. We will let you know when that changes I promise.
These are pictures of the ACTUAL pump that was inside of David the last month. It was surreal holding that in our hands today, let me tell you what. Such a tiny thing with such a powerful mission!!
Thursday, March 12, 2009
March 12th, 2009
When we went in at 10am to see David today we were all shocked to see how GOOD he was doing. He was taken off the ventilator and breathing tube at 11pm last night, only 4 hours after surgery and he was doing fantastic! He was sitting up eating some Italian ice, sipping (or chugging) water, begging for food, talking to us, and waving. We were all amazed, truly a miracle that only God could provide. The only hiccup is that his eyes (cornea's) were both scratched during the surgery, probably by the tape they use, but they are expecting that to heal by tomorrow.
I just have to say a tremendous thank you to Dr. Tang, Dr. Mellini, and Dr. Tony (sorry I am not even going to try and spell that last name!). The three of you truly used your God given talents to help David with his medical condition. God has truly blessed you with a gift that you chose to expand on and use to help people in this world and because of that this family is forever grateful. That is why we applauded you yesterday when you came out into the waiting room, you deserved it.
Doug and I feel much more rested today I must say! I think it is the first night in 60 days that we actually slept the entire night through! It was such a feeling of comfort and relaxation just knowing that our son actually had a nice beating healthy heart inside of him. I for one finally "exhaled" as Kevin Boesler put it and I still can't believe what we all went through yesterday. I am just so happy how well he is doing and when we left him to rest he was asking the nurse when he could get up and walk around. I swear that kid has one goal in mind, getting out of the hospital!
Please keep in prayers that donor family, that is very important to me and will be for a long time. That family should be praised for a long time, they saved many lives yesterday. They did several transplants from that same donor yesterday and I can't imagine how many thankful families there were but at the same time how much grief the other family is going through. We know that the donor was a minor, so that was a big decision for the family and a hard one for them to make.
I just have to say a tremendous thank you to Dr. Tang, Dr. Mellini, and Dr. Tony (sorry I am not even going to try and spell that last name!). The three of you truly used your God given talents to help David with his medical condition. God has truly blessed you with a gift that you chose to expand on and use to help people in this world and because of that this family is forever grateful. That is why we applauded you yesterday when you came out into the waiting room, you deserved it.
Doug and I feel much more rested today I must say! I think it is the first night in 60 days that we actually slept the entire night through! It was such a feeling of comfort and relaxation just knowing that our son actually had a nice beating healthy heart inside of him. I for one finally "exhaled" as Kevin Boesler put it and I still can't believe what we all went through yesterday. I am just so happy how well he is doing and when we left him to rest he was asking the nurse when he could get up and walk around. I swear that kid has one goal in mind, getting out of the hospital!
Please keep in prayers that donor family, that is very important to me and will be for a long time. That family should be praised for a long time, they saved many lives yesterday. They did several transplants from that same donor yesterday and I can't imagine how many thankful families there were but at the same time how much grief the other family is going through. We know that the donor was a minor, so that was a big decision for the family and a hard one for them to make.
Wednesday, March 11, 2009
Out of Surgery
The doctors came out about 20 min ago and David is out of surgery and they are very pleased with the outcome. They said that the heart started on its own without any assistance and it all looked really good. They are very happy with everything that went on during the surgery, there wasn't any complications at all during the surgery. Doug and I will get to see him in about 30 minutes or so and then I will feel even better then I do now.
It was such a feeling that I can't even describe when after the doctors left all 15 of us here in the waiting room stood with tears in our eyes and held hands and prayed together and lifted David up to the Lord. It was such an awesome moment, it is one that I will never forget.
I am soooo thankful right now.... feel like a little kid jumping on a bed...... YAHOO
It was such a feeling that I can't even describe when after the doctors left all 15 of us here in the waiting room stood with tears in our eyes and held hands and prayed together and lifted David up to the Lord. It was such an awesome moment, it is one that I will never forget.
I am soooo thankful right now.... feel like a little kid jumping on a bed...... YAHOO
Buh bump buh bump
At 4pm the transplant nurse came out and told us that the heart was in and beating on its own! PRAISE GOD!!!! They are sewing up all the tiny little valves that attach to the heart and slowly taking him off the heart and lung bypass machine. It will be another couple of hours before they are all finished and we will actually be able to talk to a surgeon, but I was sooooooo happy to know that the heart is in and BEATING ON ITS OWN!!!! YAY YAY OH MY OH MY
We have quite a crowd here, we were truly blessed by support today. Doug, David, and I each talked about who we wanted here as support and each one of those lovely wonderful people showed up today. Only one person couldn't come because of a child care issue, but sweetie you were here in spirit. The distance and time of day that these people traveled amazed me, all of you getting up and driving in the middle of the night just to be here for David is so wonderful and I will never forget what you have done for us today.
We have taken over the waiting room, the electrical outlets in order to plug in our laptops, cell phones etc, and we are a rowdy bunch! HAHA But just let them try and tell this mama I "can't" after what we have been through these past 60 days.
When they told me that the heart was in and beating I felt faint, my sister hugged me and I just started to shake and cry in her arms. It was like this huge weight had been lifted off of my shoulders and I just let it all out. Just knowing that he has a healthy, beating heart inside that body that has been so sick for so long, was such a relief.
We have quite a crowd here, we were truly blessed by support today. Doug, David, and I each talked about who we wanted here as support and each one of those lovely wonderful people showed up today. Only one person couldn't come because of a child care issue, but sweetie you were here in spirit. The distance and time of day that these people traveled amazed me, all of you getting up and driving in the middle of the night just to be here for David is so wonderful and I will never forget what you have done for us today.
We have taken over the waiting room, the electrical outlets in order to plug in our laptops, cell phones etc, and we are a rowdy bunch! HAHA But just let them try and tell this mama I "can't" after what we have been through these past 60 days.
When they told me that the heart was in and beating I felt faint, my sister hugged me and I just started to shake and cry in her arms. It was like this huge weight had been lifted off of my shoulders and I just let it all out. Just knowing that he has a healthy, beating heart inside that body that has been so sick for so long, was such a relief.
As we sit and wait
A friend recently related this experience to having a baby.... everyone has been waiting for "the call". I am thinking about this has our support system is coming in droves from all over the state to be here for David and us. As a matter of fact I just got a call from Lora saying "I'm Here"... she beat everyone and Monica, Mom, and Jacque aren't far behind. Doug is reading to Dave out of the "Organ Transplant" book and Dave is just sitting here listening, not letting anyone into those private thoughts. Wait until his grandma and Jacque get here and double team him with therapy psycho babble, just kidding guys:)
I on the other hand have been in constant prayer and in constant thoughts for the donor family. Yesterday morning this family had no idea that they would be facing this tragedy, but I rest in the fact that our Lord had this planned from the beginning. My prayer is that the family that is giving us the gift are also believers so that they can also rest in the Lord during this trying time. I can't stop thinking about them and their grief right now, because honestly I felt their grief for the past 60 days. Dear Lord, please wrap your arms around this family right now, comfort them, hold them tight, love them, let them know you are there for them. We love them precious Lord, and we lift them up to you in this time of need. In your precious precious name. Amen.
David's surgery is now scheduled for noon, it could be pushed back, but for now that is when it is. We will keep you all posted.... Much love......
I on the other hand have been in constant prayer and in constant thoughts for the donor family. Yesterday morning this family had no idea that they would be facing this tragedy, but I rest in the fact that our Lord had this planned from the beginning. My prayer is that the family that is giving us the gift are also believers so that they can also rest in the Lord during this trying time. I can't stop thinking about them and their grief right now, because honestly I felt their grief for the past 60 days. Dear Lord, please wrap your arms around this family right now, comfort them, hold them tight, love them, let them know you are there for them. We love them precious Lord, and we lift them up to you in this time of need. In your precious precious name. Amen.
David's surgery is now scheduled for noon, it could be pushed back, but for now that is when it is. We will keep you all posted.... Much love......
WE HAVE A HEART!!
David just called me and we have a heart. Oh my gosh.... more later...... It is 12:14am..... I am just too stunned for words.
PRAISE GOD
Thank you dear lord for your unfailing love for my family....
PRAISE GOD
Thank you dear lord for your unfailing love for my family....
Tuesday, March 10, 2009
Oops... I forgot!!
A couple of things about his new room that I forgot to mention.... first off, we are being granted a huge favor by just being able to be in this new room so we really have to mind our p's and q's while there!
I think that is it, I got so excited about our own room I forgot all the legalities!!! HAHAHA
XOXOXO
- Dave does have a phone, but he can have LIMITED amount of phone calls so we have only given out the phone # to family members, please be understanding of this.
- He can only have 3 visitors at a time, in addition to me or his dad, and it has to be quiet while visitors are there.
- No one under the age of 12 is allowed in the room with him, our friend/nurse Julie got a special exception made for his brother and sister, but that is it, no more, so please don't ask.
- Visiting hours are 11am to 8pm.
I think that is it, I got so excited about our own room I forgot all the legalities!!! HAHAHA
XOXOXO
March 10th, 2009
YIPPEEE!! WE ARE OUT OF THE ICU! I am soooo happy! It is so funny how these little things will make your day! I just have to give a HUGE shout out to Julie and the doctors for making this happen, without you this wouldn't have happened and we would still be in the ICU. THANK YOU!!!!
After yesterday it was pretty clear that David has to be on these two meds until the transplant, these meds aren't allowed off the ICU, but because of our dear Julie and her ultimate persistence, they have made an exception this ONE time for David. We are in a private room with a view and dare I say I even saw a smile on his face today?? He was really tired today and still didn't feel great, but I could tell he was so happy to get out of the ICU and see a different view of the hospital. We do have to stay in the hospital until the transplant but at least we have some great people on our side making sure that David is comfortable until that happens. I am so thankful for that, it makes things so much easier.
So, now we are still waiting, just elsewhere:) HA! I told him I will bring back all of his goodies and cards tomorrow that everyone has sent him so that we can decorate the room, I think I counted the other day and we have received over 400 cards and over 100 emails from people. It is amazing how many good people are out there in the world, and I am so thankful for all the prayers and support. Laura Haight, I can't thank you enough for your wonderful letters to both us and David, your letter to Dave brought tears to my eyes so many things in that rang true. He also received the two games that you ordered for him from Amazon today, thank you for those, we both really appreciate that! How sweet and thoughtful of you!!!
We love you all, each and everyone of you, even if we haven't met! Oh and Cathy Wiggins... the iced teas were great... it made the waiting for our new room go by faster...... :) Smiles
After yesterday it was pretty clear that David has to be on these two meds until the transplant, these meds aren't allowed off the ICU, but because of our dear Julie and her ultimate persistence, they have made an exception this ONE time for David. We are in a private room with a view and dare I say I even saw a smile on his face today?? He was really tired today and still didn't feel great, but I could tell he was so happy to get out of the ICU and see a different view of the hospital. We do have to stay in the hospital until the transplant but at least we have some great people on our side making sure that David is comfortable until that happens. I am so thankful for that, it makes things so much easier.
So, now we are still waiting, just elsewhere:) HA! I told him I will bring back all of his goodies and cards tomorrow that everyone has sent him so that we can decorate the room, I think I counted the other day and we have received over 400 cards and over 100 emails from people. It is amazing how many good people are out there in the world, and I am so thankful for all the prayers and support. Laura Haight, I can't thank you enough for your wonderful letters to both us and David, your letter to Dave brought tears to my eyes so many things in that rang true. He also received the two games that you ordered for him from Amazon today, thank you for those, we both really appreciate that! How sweet and thoughtful of you!!!
We love you all, each and everyone of you, even if we haven't met! Oh and Cathy Wiggins... the iced teas were great... it made the waiting for our new room go by faster...... :) Smiles
Mothers Guilt
Through the last 2 months my heart strings have tugged as I have been torn between my 2 sets of kids, of course there is no place I would rather be then by David's side, but I miss John and Claire so much. Honestly though things are so stressful around the hospital and the kids are so busy at home that none of us really have time to "worry" about being away from each other, but it is still there. Until today.....
All weekend, I was the image of the perfect mother! HAHA!! I cleaned, did laundry, Claire had a sleepover with a friend, John had a friend over, I cooked dinner, did grocery shopping, worked on John's science fair project, and I even got in a little girl time late Monday night for myself. I was feeling pretty on top of the world and thinking that I could do it all until last night when I got home and Doug said these words to me, "Claire is really sick, she has a high fever." All of a sudden the bottom dropped out from under me, and I was like, "oh my gosh I have to leave tomorrow". Mommy guilt hit me like no other last night and again this morning when I left and she was laying on the couch with that little sick face that just said, "mommy hold me." But I know that daddy was there and then at noon grandma was taking over, so all would be well. But still it was very hard to leave and really for the first time since all this started I felt really torn in half.
All weekend, I was the image of the perfect mother! HAHA!! I cleaned, did laundry, Claire had a sleepover with a friend, John had a friend over, I cooked dinner, did grocery shopping, worked on John's science fair project, and I even got in a little girl time late Monday night for myself. I was feeling pretty on top of the world and thinking that I could do it all until last night when I got home and Doug said these words to me, "Claire is really sick, she has a high fever." All of a sudden the bottom dropped out from under me, and I was like, "oh my gosh I have to leave tomorrow". Mommy guilt hit me like no other last night and again this morning when I left and she was laying on the couch with that little sick face that just said, "mommy hold me." But I know that daddy was there and then at noon grandma was taking over, so all would be well. But still it was very hard to leave and really for the first time since all this started I felt really torn in half.
Monday, March 9, 2009
March 9th, 2009
Today the doctors wanted to try and take David off one of the drugs to see how he would respond. I for one was vehemently against this when it was suggested last night, and openly said so. It happens to be the one drug that his heart really responds to and actually makes Dave feel good because it helps his heart really stimulate and function well. Of course I am not a doctor, so early this morning they backed him off of it just to see if he could tolerate it. Well, you know that saying, "your mother is always right".. it is soooo true! Almost immediately Dave felt sick to his tummy and started with his familiar mantra of "my body doesn't feel like it is working right". So they put him back on the meds right away at a low dose, the low dose didn't help much and by the mid afternoon he was back up to the amount he was on yesterday. He still felt really yucky all afternoon and evening just from that little bit of trial and I am a bit irritated by it all, but I know that they needed to test the waters and see just what they are dealing with. When I "talked" with him last he was going to ask for something to help him sleep tonight.
He is feeling really discouraged and I feel badly for him because we are all adults and he is only 19! We have to remember that we can continually remind him that he is still here and that he has suffered a lot and he will be a better person for it, but for a 19 year old this is really a hard road. It would be a hard road for anyone, but especially for someone so very young. Patience is hard for youth, and he has been laying in a hospital bed for 60 days as of today, that is such a long time and after that long you start to really feel down, any one of us would. He told his dad tonight he feels like "throwing in the towel". He has talked like that to me on more then one occasion and I hate it when he says things like that, but I can hardly blame him. This is just a horrible thing for him to have to go through. He like everyone else is just really stupefied that this is all happening to him and that all of these things keep happening, he is kind of like, "what are the chances?" We keep telling him to hang in there and to be strong, but even that is getting old on him and I know he is getting tired of hearing it. He wants and needs to see some big changes and fast.
One thing that is really good news, is that the doctors got clearance for him to be able to leave ICU even though he is on all the meds. I don't know who they bribed to get the ok, but they did it and I am so glad. Only one catch, he has to get a little more stable then today and he has to be feeling better then he did today. So that is our goal for tomorrow so that we can get the dodge out of the ICU. We know we will have to stay in the hospital until the heart comes, but a private room out of the ICU would be oh so nice and a nice change of scenery for him, it would be something at least.
He is feeling really discouraged and I feel badly for him because we are all adults and he is only 19! We have to remember that we can continually remind him that he is still here and that he has suffered a lot and he will be a better person for it, but for a 19 year old this is really a hard road. It would be a hard road for anyone, but especially for someone so very young. Patience is hard for youth, and he has been laying in a hospital bed for 60 days as of today, that is such a long time and after that long you start to really feel down, any one of us would. He told his dad tonight he feels like "throwing in the towel". He has talked like that to me on more then one occasion and I hate it when he says things like that, but I can hardly blame him. This is just a horrible thing for him to have to go through. He like everyone else is just really stupefied that this is all happening to him and that all of these things keep happening, he is kind of like, "what are the chances?" We keep telling him to hang in there and to be strong, but even that is getting old on him and I know he is getting tired of hearing it. He wants and needs to see some big changes and fast.
One thing that is really good news, is that the doctors got clearance for him to be able to leave ICU even though he is on all the meds. I don't know who they bribed to get the ok, but they did it and I am so glad. Only one catch, he has to get a little more stable then today and he has to be feeling better then he did today. So that is our goal for tomorrow so that we can get the dodge out of the ICU. We know we will have to stay in the hospital until the heart comes, but a private room out of the ICU would be oh so nice and a nice change of scenery for him, it would be something at least.
Sunday, March 8, 2009
March 8th, 2009
Doug called today after Dr. Tang came in and told me that he said that this is quite unusual that we are having to wait so long for a heart. That it usually happens much faster then this, of course this news really annoyed Dave and made him a little down in the mouth. He is so sick of all of this, when I talked to him tonight through chatting on the computer he told me that everything that could go wrong has gone wrong to him and at first I tried to do the "oh honey no it hasn't " and then I was like, "who am I kidding, it really has". So I just told, "remember all of the lessons we are learning and don't give up!" I tell him everyday that he is the strongest person I know, even though I know by now he is sick of hearing it, one day he will look back on all of this and he will remember that and he will remember his strength and he will learn how to rely on that.
I do hope it does come soon, for all of our sake. Living like this isn't the healthiest for any of us, but we are trying to make the best of it. I keep thinking of all of those shipmates of David's that have wives alone at shore while they are gone for months at a time, if they can do it, so can we. God is good and he will heal David and he will once again bring us together as a family. It will just be in his timing, not ours and even the strongest of Christians have a hard time with that fact sometimes!
I do hope it does come soon, for all of our sake. Living like this isn't the healthiest for any of us, but we are trying to make the best of it. I keep thinking of all of those shipmates of David's that have wives alone at shore while they are gone for months at a time, if they can do it, so can we. God is good and he will heal David and he will once again bring us together as a family. It will just be in his timing, not ours and even the strongest of Christians have a hard time with that fact sometimes!
Saturday, March 7, 2009
March 7th, 2009
Doug says all is well over at the hospital today, Dave went out for a long walk and they called us so we could talk to Dave, and he really wanted to talk to the kids. After the walk he was really tired and slept for a long time, when he woke up I guess he felt a bit nauseous here and there, but Doug left during one of his sleeping bouts, so we will find out more of that tomorrow. He pretty much slept all afternoon Doug said, so hopefully he is still feeling pretty good. Kiana was his nurse today, so all was right in the world of Dave. He felt good, his dad was there, he got to call home, and one of our faves was his nurse. What more could we ask for? Except a heart of course!
The kids and I spent a nice day at home and then went over and had dinner with my dad, brother, and sister. It was a nice evening and it was good to laugh and talk about other things for a bit. I loved playing with my 18 month old nephew and it did my heart good to spend some time with him and really enjoy the little kid in all of us for a while. Claire is having a sleepover with a girlfriend tonight, so they are camped out in the living room in a tent, John is in his room watching Star Wars and nodding off, and I am (big sigh here) feeling lonely, but happy that today was a good day for all of us and it was an almost "normal" day.
The kids and I spent a nice day at home and then went over and had dinner with my dad, brother, and sister. It was a nice evening and it was good to laugh and talk about other things for a bit. I loved playing with my 18 month old nephew and it did my heart good to spend some time with him and really enjoy the little kid in all of us for a while. Claire is having a sleepover with a girlfriend tonight, so they are camped out in the living room in a tent, John is in his room watching Star Wars and nodding off, and I am (big sigh here) feeling lonely, but happy that today was a good day for all of us and it was an almost "normal" day.
Pictures of the BIG DOG
As I stated in a previous post, last Thursday Dave had another visit from a pet therapy animal, and this time the dog was a more "manly" dog:) This dog was the sweetest animal, ever! So soft and cuddly and she was just a lover, couldn't wait to get up on the bed with him. When the visit was over she even waved goodbye, it was so stinking cute. Dave really enjoyed her, as did the rest of us!
Friday, March 6, 2009
March 6th, 2009
Home again, home again... AAAHHHH.... I am home for 3 glorious days. Doug will head up to Stanford on Saturday and has decided to stay until Monday so I can catch my breath and just take a break for a bit. We can't do 3 day runs like this all the time because of his work schedule, but when it works out, it will be really nice. I can't wait, already it feels so good to be home. The house is a total mess, the kids are crazy, the cat is sleeping in my suitcase, the dogs are happy to see me, there is laundry to do, and it just feels like home. I wouldn't settle for anything less at this point!
Last night at the hotel my mom insisted on making me a home cooked meal, and I am glad she did. It was so yummy to have steak, potatoes, salad, and a yummy banana cream pie for dessert. We sat around and laughed, joked, talked and really enjoyed ourselves for the evening. My brother and pop enjoyed the workout room and the jacuzzi and we all "skyped" the kids and Doug so we could say hi as well as see them last night. I love modern technology and all that we can do with it, the fact that I can see my kids every night before bed on this "web cam" is so awesome. It was a great end to an evening last night and I was sad to see them all go this morning, but it was just what the Lord knew that I needed.
Today when we got to the hospital, Dave was sleeping, but when he woke he said he felt much better then he did even yesterday. My parents and brother said goodbye which was hard for all of us and then we just relaxed for a bit. While I was getting ready to head out, my stepmother and baby brother Ricky showed up for a visit. We knew they were coming and it was perfect timing since I was getting ready to leave. Dave was excited for more visitors and he and my brother Rick are really close, so he had been looking forward to the visit. We all visited for a bit before I headed out because I had promised the kids I would pick them up from school, I barely made it! HAHA
I hate that we have no way of talking to Dave when we aren't there, but I have confidence that they would call us if anything were to go awry. Today I really felt ok with leaving because all 3 of our "girls" were working, Kim, Kiana, and Sarah:) So I knew he was in good hands all day long, because even though none of them were his nurse today, they all take turns coming in and checking on him. It is so great to have such a wonderful support system there, I still can't believe how wonderful they all have been. I also found out this week that this will be the same ICU that he will go into after the transplant, and that is oh so comforting to know that we will be with the same people and workers after that surgery.
So I am off to put my kids to bed and enjoy the next 3 days of mommy time with them. I will still post as I hear from Doug, and anything else silly that comes to mind, or random thoughts like I have been known to do. Thank you again for all of your prayers and support, they mean so much to all of us.
Last night at the hotel my mom insisted on making me a home cooked meal, and I am glad she did. It was so yummy to have steak, potatoes, salad, and a yummy banana cream pie for dessert. We sat around and laughed, joked, talked and really enjoyed ourselves for the evening. My brother and pop enjoyed the workout room and the jacuzzi and we all "skyped" the kids and Doug so we could say hi as well as see them last night. I love modern technology and all that we can do with it, the fact that I can see my kids every night before bed on this "web cam" is so awesome. It was a great end to an evening last night and I was sad to see them all go this morning, but it was just what the Lord knew that I needed.
Today when we got to the hospital, Dave was sleeping, but when he woke he said he felt much better then he did even yesterday. My parents and brother said goodbye which was hard for all of us and then we just relaxed for a bit. While I was getting ready to head out, my stepmother and baby brother Ricky showed up for a visit. We knew they were coming and it was perfect timing since I was getting ready to leave. Dave was excited for more visitors and he and my brother Rick are really close, so he had been looking forward to the visit. We all visited for a bit before I headed out because I had promised the kids I would pick them up from school, I barely made it! HAHA
I hate that we have no way of talking to Dave when we aren't there, but I have confidence that they would call us if anything were to go awry. Today I really felt ok with leaving because all 3 of our "girls" were working, Kim, Kiana, and Sarah:) So I knew he was in good hands all day long, because even though none of them were his nurse today, they all take turns coming in and checking on him. It is so great to have such a wonderful support system there, I still can't believe how wonderful they all have been. I also found out this week that this will be the same ICU that he will go into after the transplant, and that is oh so comforting to know that we will be with the same people and workers after that surgery.
So I am off to put my kids to bed and enjoy the next 3 days of mommy time with them. I will still post as I hear from Doug, and anything else silly that comes to mind, or random thoughts like I have been known to do. Thank you again for all of your prayers and support, they mean so much to all of us.
Thursday, March 5, 2009
March 5th, 2009
I am happy to report that Dave had a fantastic day today! Tell you what, this one drug that they give him through the IV is like night and day for him. I noticed it the first time they put him on it when we were down stairs in the CCU and I have noticed it now this week again. He was smiling and laughing at something on the Internet that one of the nurses sent him via email this morning when I got there, and that was the first time I saw him actually laugh out loud since he has been in the ICU. I wanted to scoop him up and squeeze him I was so happy!! What a day! Then as an added bonus my mom, step dad (Pop), and brother showed up at 10:30 this morning and he was so thrilled. It was never ending smiles from there on out for the rest of the day, he was so happy to see them all. My brother and pop had him and the nurse laughing all day long with their typical antics and sense of humor and it was such a joy for me to see Dave really enjoying himself.
He felt a little lightheaded when he stood up today so we took a long wheelchair ride down to the atrium and garden with everyone in tow. While at the gardens it started to rain, so we took a seat inside the atrium and the men decided to play some cards for a bit and enjoy the quiet and Dave loved being out of the room and doing something "normal" for a change. We did that for about 30 - 45 min or so before heading back up to the room. We laughed and chatted, enjoyed some popcorn that Greg shared from the nurse break room and just had some great family time.
Greg also arranged for another pet visit, which was fantastic! We had a HUGE dog come and visit today. I do have pictures of that, but I don't have the cord that goes from my camera to the laptop so those will have to wait until tomorrow. However, my brother took his camera on our wheelchair walk/ride and so I was able to get his pictures off of his camera because he had all the attachments!
The men playing cards.
Dave, me, Grandma Deb, Grandpa Doug, and Uncle Matt.
Dave, me and Uncle Matt.
Dave and Uncle Matt
He felt a little lightheaded when he stood up today so we took a long wheelchair ride down to the atrium and garden with everyone in tow. While at the gardens it started to rain, so we took a seat inside the atrium and the men decided to play some cards for a bit and enjoy the quiet and Dave loved being out of the room and doing something "normal" for a change. We did that for about 30 - 45 min or so before heading back up to the room. We laughed and chatted, enjoyed some popcorn that Greg shared from the nurse break room and just had some great family time.
Greg also arranged for another pet visit, which was fantastic! We had a HUGE dog come and visit today. I do have pictures of that, but I don't have the cord that goes from my camera to the laptop so those will have to wait until tomorrow. However, my brother took his camera on our wheelchair walk/ride and so I was able to get his pictures off of his camera because he had all the attachments!
The men playing cards.
Dave, me, Grandma Deb, Grandpa Doug, and Uncle Matt.
Dave, me and Uncle Matt.
Dave and Uncle MattWednesday, March 4, 2009
March 4th, 2009
The doctors came in today and told us what I had been expecting to hear, that David's heart condition is worsening. They have now had to put him back on 2 out of the 3 heart meds that they took him off of last week in order to help his heart function better. The bummer part of all this is that he feels the best when he is on the meds because they help his heart work so well, but that means he has to stay in the ICU while on them. It is truly a battle of lesser evils in my opinion. As soon as they started him on the second heart med today I saw an instant change in him, his color got better, he wanted to eat a little bit, he started playing his PSP, and we got him up for a walk.
He had to face a hard truth today, that he would not be leaving the hospital before the heart transplant. Somewhere in the back of his mind I think he was hoping that he would be well enough and some point to leave the hospital and continue the wait at the hotel or better yet at home. The doctors and I had to get real with him today and tell him that was just not a possibility, his heart is too weak. Watching him take in that realization was one of the hardest things I have ever had to do. Once again I realized that he is so young and there isn't any good reason why he should have to be going through this. As soon as the doctors left he was incredibly angry and frustrated it was written all over his face, he asked me to go and get him something to drink and I knew that was my cue to give him some alone time. Believe me I needed it as well.
I sat in the bathroom for the longest time images of this child flashing through my head and wondering once again WHY US??? That is the million dollar question here, I wouldn't wish this upon anyone, but honestly lets just get it out there, why in the heck did it have to be us?? I kept thinking about him when he got his first bike on Christmas Eve in 95, how he looked on our wedding day, the day that John was born, his first day of high school, and the day he left for the Navy and I felt incredibly naive and stupid for taking every one of those memories for granted. It's not even as if I was trying to recall those memories they were just all of a sudden there like the Lord was trying to tell me something and I have yet to figure it out.
When I returned to his room after lunch his spirits were a little better and I could tell he felt much more resolved about the situation. I owe a lot of this resolution to the nurse we had today, Greg. I can't thank him enough for sitting by David's bedside and just letting David talk or looking at me while David was sleeping and taking the time to make sure I was ok after we received such heavy news today. It is people like the Greg's in the world that make it a little bit easier to deal with this incredible pain. Back to what he said to me... he looked at me and with that typical David attitude (and all of you who know him know what I mean) said to me "I am really sick and I am not going to get better without a new heart, and so if I have to stay here in the ICU in the mean time, oh well, I can deal with that." And that was that, he had resigned himself to it and I could just tell he made himself right with the Lord and had moved on.
Oh how I wish I had that strength, I felt like the weakest link for crying in the bathroom at that point. I know I had every right, but here is this child going through what no 19 year old should EVER have to go through and he made himself ok with it, just like that. And here I am this 32 year old woman struggling every minute of the day trying to make myself understand why. This boy has taught me lessons upon lessons of life and I can not wait for the day that I can share that with him.
He had to face a hard truth today, that he would not be leaving the hospital before the heart transplant. Somewhere in the back of his mind I think he was hoping that he would be well enough and some point to leave the hospital and continue the wait at the hotel or better yet at home. The doctors and I had to get real with him today and tell him that was just not a possibility, his heart is too weak. Watching him take in that realization was one of the hardest things I have ever had to do. Once again I realized that he is so young and there isn't any good reason why he should have to be going through this. As soon as the doctors left he was incredibly angry and frustrated it was written all over his face, he asked me to go and get him something to drink and I knew that was my cue to give him some alone time. Believe me I needed it as well.
I sat in the bathroom for the longest time images of this child flashing through my head and wondering once again WHY US??? That is the million dollar question here, I wouldn't wish this upon anyone, but honestly lets just get it out there, why in the heck did it have to be us?? I kept thinking about him when he got his first bike on Christmas Eve in 95, how he looked on our wedding day, the day that John was born, his first day of high school, and the day he left for the Navy and I felt incredibly naive and stupid for taking every one of those memories for granted. It's not even as if I was trying to recall those memories they were just all of a sudden there like the Lord was trying to tell me something and I have yet to figure it out.
When I returned to his room after lunch his spirits were a little better and I could tell he felt much more resolved about the situation. I owe a lot of this resolution to the nurse we had today, Greg. I can't thank him enough for sitting by David's bedside and just letting David talk or looking at me while David was sleeping and taking the time to make sure I was ok after we received such heavy news today. It is people like the Greg's in the world that make it a little bit easier to deal with this incredible pain. Back to what he said to me... he looked at me and with that typical David attitude (and all of you who know him know what I mean) said to me "I am really sick and I am not going to get better without a new heart, and so if I have to stay here in the ICU in the mean time, oh well, I can deal with that." And that was that, he had resigned himself to it and I could just tell he made himself right with the Lord and had moved on.
Oh how I wish I had that strength, I felt like the weakest link for crying in the bathroom at that point. I know I had every right, but here is this child going through what no 19 year old should EVER have to go through and he made himself ok with it, just like that. And here I am this 32 year old woman struggling every minute of the day trying to make myself understand why. This boy has taught me lessons upon lessons of life and I can not wait for the day that I can share that with him.
Fasting Tomorrow
Some of us would like to fast for David, and I wanted to let you know when this would be happening in case any one else would like to join us. Please know that we are just letting you know, we aren't asking you to join us or trying to push onto you a belief that you may not feel comfortable with. Fasting is an incredibly private matter between you and the Lord, if you choose to do this please do so as you feel comfortable with in your walk with the Lord.
We have chosen tomorrow, Thursday March 5th from 6am to 6pm. If you want to fast for a shorter or longer amount of time that is totally up to you.
Joel 1:14 "Declare a holy fast, call a sacred assembly. Summon the elders and all who live in the land to the house of the Lord your God, and cry out to the Lord."
We have chosen tomorrow, Thursday March 5th from 6am to 6pm. If you want to fast for a shorter or longer amount of time that is totally up to you.
Joel 1:14 "Declare a holy fast, call a sacred assembly. Summon the elders and all who live in the land to the house of the Lord your God, and cry out to the Lord."
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