Thursday, February 4, 2016
Give Heart Campaign
Hello! It's that time of year again! Time for our annual Give Heart campaign! For those not familiar or those that need a reminder....
On March 11th, 2009 our son David was given the gift of Heart Transplant and we were able to enjoy 9 more months with him before he joined Jesus. Even though he was unable to celebrate his 1st transplant anniversary or the anniversaries following, we made the decision to honor that special day every year.
David waited for a new heart for over 65 days, and each of those days was spent in the ICU of Stanford Hospital. While waiting for a heart, every day he received piles and piles of mail from people all over the world. People that just wanted to support him and let him know they were praying for him and loving on him.
In honor of David and all those waiting for transplant, each year on the anniversary of David's transplant we collect cards, notes of encouragement, gifts, and whatever else people may want to send to the patients of Stanford Hospital that are awaiting transplant. We call this the "Give Heart" campaign.
If you would like to be a part of this wonderful outreach please get me your cards by March 7th, we will deliver them that week.
Wednesday, April 7, 2010
Day by day..
Hi all.... haven't blogged much lately... things have been pretty tough around our home and getting used to David being gone. I don't think that will ever be easy or that any of us will ever get over it, but time will make the hurt a little bit better. I am so thankful for all of the family and friends that have been there for us every step of the way supporting us and supporting our family during this tremendous trial, family has been the most important thing and I am so glad for the family that has not given up on us and have been there for us every step of the way.
In the months since David passing we have tried to keep busy with the house remodel, some travel, and just hunkering down as a family. John and Claire really miss their big brother and we have been trying to encourage them as much as possible. We celebrated Davids one year transplant anniversary in Hawaii because that is what he said he wanted to do... that was bittersweet, but it was very good for our souls as well.
In January the Navy put on a large memorial for David for his ship and we went to San Diego for that, I am still shocked by the immense support that we got from them and the loving people that are involved with the Navy.
I cry every day still, I miss David so very much, he has been a part of my life for over 15 years and I loved him first before Doug. He was my boy, and last year was something I will never forget, he and I became so close, we became best friends. I miss my best friend more then anything, every morning I wake up still hoping this is all still a dream, not sure when that will go away exactly. Doug is handling this so much better then I am, I honestly wish I could be like him and handle it in a stronger fashion. But above all things I am so thankful for my Savior Jesus Christ for providing me the knowledge so I can see David again. Oh but what I would do for one more bear hug from that boy... the night before he went into the coma he hugged me tight and said, "psshh don't worry about me, I feel fine, just like everyone else."
Reality of this world is sometimes so hard to accept, death happens, and it happens to those of us who don't think it will happen to us. 2 years ago a good friend of mine lost her husband quite suddenly and I was devastated for her, but I thought the same thing that lots of others probably thought, "that is pretty rare". The Lord really likes to show us his works when we least expect it, even though it is so hard some days to wake up and go about our daily lives without David, I know that this whole scenario is part of God's almighty plan.
In the months since David passing we have tried to keep busy with the house remodel, some travel, and just hunkering down as a family. John and Claire really miss their big brother and we have been trying to encourage them as much as possible. We celebrated Davids one year transplant anniversary in Hawaii because that is what he said he wanted to do... that was bittersweet, but it was very good for our souls as well.
In January the Navy put on a large memorial for David for his ship and we went to San Diego for that, I am still shocked by the immense support that we got from them and the loving people that are involved with the Navy.
I cry every day still, I miss David so very much, he has been a part of my life for over 15 years and I loved him first before Doug. He was my boy, and last year was something I will never forget, he and I became so close, we became best friends. I miss my best friend more then anything, every morning I wake up still hoping this is all still a dream, not sure when that will go away exactly. Doug is handling this so much better then I am, I honestly wish I could be like him and handle it in a stronger fashion. But above all things I am so thankful for my Savior Jesus Christ for providing me the knowledge so I can see David again. Oh but what I would do for one more bear hug from that boy... the night before he went into the coma he hugged me tight and said, "psshh don't worry about me, I feel fine, just like everyone else."
Reality of this world is sometimes so hard to accept, death happens, and it happens to those of us who don't think it will happen to us. 2 years ago a good friend of mine lost her husband quite suddenly and I was devastated for her, but I thought the same thing that lots of others probably thought, "that is pretty rare". The Lord really likes to show us his works when we least expect it, even though it is so hard some days to wake up and go about our daily lives without David, I know that this whole scenario is part of God's almighty plan.
Tuesday, January 5, 2010
Charity that we have chose....
For those of you wanting to make a donation this is the organization that we have chosen:
"Patient Assistance Fund for Heart Transplant Patients"
Our particular experience this past year resulted in 4.2 million in medical bills, none of which we had to pay for because of military insurance. It also cost close to $42,000 to live there for the 7 months and take care of David and other needs such as hotels, meals, gas, and other things that insurance does not cover. None of that would have been possible for us if we didn't have the Navy helping us. Most of the other patients that have to go through this DO NOT have military insurance or financial help from the Navy. Can you imagine coming up with that much money when a loved one is an ill? Most care takers and/or patients quit their jobs because of this illness and have no income coming in.
Because of this, we feel strongly to donate to this particular fund. This fund helps patients pay for things such as after transplant care, medicine, and etc. Transplant patients take over $8000 in medicine every month, most patients have to pay 50% of that. Each post transplant clinic visit is $14500, that is once a month for the first year, most people have to pay at least 20-60% of that total.
If you are inclined to make a donation to this fund below is the information on how to do so. When making the donation please include in either the memo section or somewhere else in the check, "In the Name of David Kennedy".
Patient Assistance Fund
“Please make memorial donations to the Heart Transplant Patient Assistance Fund at Stanford Hospital and Clinics. Checks should be made out to SHC and sent to Stanford Hospital & Clinics, c/o Kim Standridge, 750 Welch Road, Suite 200, Palo Alto, CA 94304.”
"Patient Assistance Fund for Heart Transplant Patients"
Our particular experience this past year resulted in 4.2 million in medical bills, none of which we had to pay for because of military insurance. It also cost close to $42,000 to live there for the 7 months and take care of David and other needs such as hotels, meals, gas, and other things that insurance does not cover. None of that would have been possible for us if we didn't have the Navy helping us. Most of the other patients that have to go through this DO NOT have military insurance or financial help from the Navy. Can you imagine coming up with that much money when a loved one is an ill? Most care takers and/or patients quit their jobs because of this illness and have no income coming in.
Because of this, we feel strongly to donate to this particular fund. This fund helps patients pay for things such as after transplant care, medicine, and etc. Transplant patients take over $8000 in medicine every month, most patients have to pay 50% of that. Each post transplant clinic visit is $14500, that is once a month for the first year, most people have to pay at least 20-60% of that total.
If you are inclined to make a donation to this fund below is the information on how to do so. When making the donation please include in either the memo section or somewhere else in the check, "In the Name of David Kennedy".
Patient Assistance Fund
“Please make memorial donations to the Heart Transplant Patient Assistance Fund at Stanford Hospital and Clinics. Checks should be made out to SHC and sent to Stanford Hospital & Clinics, c/o Kim Standridge, 750 Welch Road, Suite 200, Palo Alto, CA 94304.”
Wednesday, December 30, 2009
Memorial Service
For those of you who can not attend the service, the service will be broadcasted on this blogsite... check the blog on Saturday for the link and etc...
So many of you have been such a big part of this journey, many whom we have never met... we would love for you to join us in the Celebration of David's Life no matter where you are...
So many of you have been such a big part of this journey, many whom we have never met... we would love for you to join us in the Celebration of David's Life no matter where you are...
Tuesday, December 29, 2009
In Memoriam
For those of you who have asked:
In lieu of flowers we are asking for donations be made to the benefit fund on the blogsite. We will be making a donation in David's name to Stanford in the field of Cardiology/Heart Transplant Research.
Thank you
In lieu of flowers we are asking for donations be made to the benefit fund on the blogsite. We will be making a donation in David's name to Stanford in the field of Cardiology/Heart Transplant Research.
Thank you
Saturday, December 26, 2009
At Home With Jesus
Today at 12:15 pm our sweet boy, David Allen Kennedy, went home to be with the Lord.
His body just could not take the trauma and all of his organs started to fail.
It has been a very hard day... please keep our family in your prayers.
For service information please contact a family member or us by email.
His body just could not take the trauma and all of his organs started to fail.
It has been a very hard day... please keep our family in your prayers.
For service information please contact a family member or us by email.
Friday, December 25, 2009
Side Effects
Some of the side effects of being on the Bypass Machine for too long are starting to rear their ugly face...
Over the night and morning Dave started bleeding from the leg which the bypass is hooked up too, because of the blood loss they started having to do transfusions. They can't do transfusions for too long so this morning they did an in room surgery/procedure to start repairing that damage. That damage is now under control, but his kidneys are now starting to fail and they have started dialysis.
We just talked to the doctors and they have told us that David is failing and fast, he is not responding to the measures they are taking, and the next 24 hours will be critical. He is less likely to handle a transplant today then he was yesterday, and tomorrow the chances will be very slim.
Today we need a heart... today.
Over the night and morning Dave started bleeding from the leg which the bypass is hooked up too, because of the blood loss they started having to do transfusions. They can't do transfusions for too long so this morning they did an in room surgery/procedure to start repairing that damage. That damage is now under control, but his kidneys are now starting to fail and they have started dialysis.
We just talked to the doctors and they have told us that David is failing and fast, he is not responding to the measures they are taking, and the next 24 hours will be critical. He is less likely to handle a transplant today then he was yesterday, and tomorrow the chances will be very slim.
Today we need a heart... today.
Thursday, December 24, 2009
Back at Stanford
For those of you who don't know....
On December 22nd at 4am David came into our bedroom and woke us up complaining of swelling and shortness of breath. Shortly after that he began vomiting and said he needed to go to the ER. Doug drove him to the nearest ER while I arranged things with the kids and my job. While at the ER in Stockton, Ca David was told he was in heart failure and Stanford sent a helicopter and life flighted him back.
We arrived shortly after the helicopter and Dave was in grave condition.The doctors told us he was in severe rejection and he needed to be repaired right away. They prepped him for a biopsy to see how bad the rejection was. While in the room Davids heart stopped and they brought him back fairly quickly. While in the biopsy room he coded during the procedure and the team of doctors did chest compressions for 63 minutes before deciding to put him on a heart and lung bypass machine.
He has currently been on the bypass and in a medically induced coma since Tuesday night at 9pm. Today we were told that his heart is too damaged to repair itself and retransplantation is the only option. They have relisted him at 1A severe status as of this morning. The chances are slim that he will live to receive a new heart as the doctors only want to keep the machine going for a total of 5 days, survival rate and other complications become worse after that point. Right now he does have brain function, and his other organs show no damage.
So our prayers are this, a new heart quickly, for him to be able to survive the surgery as he is so weak, and for him to recover after transplant, he is much weaker this time around.
At this time he is not awake and as I said before in a medically induced coma, for his own protection. Please pray for us, love us, and do not judge us. We love all of you, your continued support means so much to us.
On December 22nd at 4am David came into our bedroom and woke us up complaining of swelling and shortness of breath. Shortly after that he began vomiting and said he needed to go to the ER. Doug drove him to the nearest ER while I arranged things with the kids and my job. While at the ER in Stockton, Ca David was told he was in heart failure and Stanford sent a helicopter and life flighted him back.
We arrived shortly after the helicopter and Dave was in grave condition.The doctors told us he was in severe rejection and he needed to be repaired right away. They prepped him for a biopsy to see how bad the rejection was. While in the room Davids heart stopped and they brought him back fairly quickly. While in the biopsy room he coded during the procedure and the team of doctors did chest compressions for 63 minutes before deciding to put him on a heart and lung bypass machine.
He has currently been on the bypass and in a medically induced coma since Tuesday night at 9pm. Today we were told that his heart is too damaged to repair itself and retransplantation is the only option. They have relisted him at 1A severe status as of this morning. The chances are slim that he will live to receive a new heart as the doctors only want to keep the machine going for a total of 5 days, survival rate and other complications become worse after that point. Right now he does have brain function, and his other organs show no damage.
So our prayers are this, a new heart quickly, for him to be able to survive the surgery as he is so weak, and for him to recover after transplant, he is much weaker this time around.
At this time he is not awake and as I said before in a medically induced coma, for his own protection. Please pray for us, love us, and do not judge us. We love all of you, your continued support means so much to us.
Sunday, November 15, 2009
A New Beginning
Hello all!
I just wanted to post an update to all of you that still check out David's Journey... even though we have stopped blogging on this site we all still think of each and everyone of you always and what your support has meant to us this past year.
For more updates please feel free to go to our family blog, where I will posting from now on. http://www.familyofkennedys.blogspot.com/
In Christ,
Bronwyn and Family
I just wanted to post an update to all of you that still check out David's Journey... even though we have stopped blogging on this site we all still think of each and everyone of you always and what your support has meant to us this past year.
For more updates please feel free to go to our family blog, where I will posting from now on. http://www.familyofkennedys.blogspot.com/
In Christ,
Bronwyn and Family
Tuesday, October 20, 2009
Thursday, September 3, 2009
Adjustments....
I logged onto the blog today to finally update because it has been so long since I have! I feel badly because so many people have emailed me and called me for updates and I have been so bad about doing that!
So moving on.... it has been quite a month of adjustments for all of us! Starting with David! He is doing great by the way! I am so proud of him and this new leash on life that he has taken by the hold. He is feeling good and has had no medical upsets since July. As a matter of fact as I type this I am sitting in the Stanford waiting room with him at his 6 month post transplant check up. He is still in San Diego going through the process of being retired from the military, and that is taking a long time. He is enjoying his time there and is passing the time catching up with his old ship mates. He is very anxious to get home though, and is looking forward to that day. He has really taken a hold of this new life with a new outlook, and we are so proud of him. He has started making some great goals for the future. He hopes to start college in January and he is just started some early training for the World Transplant Games. He really wants to compete in the 2011 games in Sweden! Thanks Joe for inspiring him!
As for the rest of us, it has been anything but easy to come back home and get back into the old routine. We love being together as a family again, but that did not come without some adjusting! Doug and I lived apart from each other for 8 months! That is a long time, so it has almost been like dating again, or early marriage days! Which has its good points and bad! The kids are loving me being home, and school started for them a couple of weeks ago. It has been hard for me to be home all alone after having a constant companion for the last 8 months, but in a lot of ways it has been good for me as well. I am finally starting to really grieve for all that we did lose, but at the same time use the quiet time for self reflection and appreciation for all that God has given us.
With all that being said, I have to say that the transplant was the easy part. It is the after that has been the hardest to deal with for all of us. I think we all expected to wake up on March 12th the day after transplant and just have life be totally normal. That has so not been the case, it has been hard for each one of us. Somedays it is just easier to smile and say everything is ok, then it is to really relay the truth. I just ask for constant prayers that the Lord will continue to protect and love our family.
Again, we are all so grateful for everything everyone has done for us, even if it wasn't ever said out loud, those of you who really know us, and really know our hearts know how appreciative we are of everything you have done for us.
So moving on.... it has been quite a month of adjustments for all of us! Starting with David! He is doing great by the way! I am so proud of him and this new leash on life that he has taken by the hold. He is feeling good and has had no medical upsets since July. As a matter of fact as I type this I am sitting in the Stanford waiting room with him at his 6 month post transplant check up. He is still in San Diego going through the process of being retired from the military, and that is taking a long time. He is enjoying his time there and is passing the time catching up with his old ship mates. He is very anxious to get home though, and is looking forward to that day. He has really taken a hold of this new life with a new outlook, and we are so proud of him. He has started making some great goals for the future. He hopes to start college in January and he is just started some early training for the World Transplant Games. He really wants to compete in the 2011 games in Sweden! Thanks Joe for inspiring him!
As for the rest of us, it has been anything but easy to come back home and get back into the old routine. We love being together as a family again, but that did not come without some adjusting! Doug and I lived apart from each other for 8 months! That is a long time, so it has almost been like dating again, or early marriage days! Which has its good points and bad! The kids are loving me being home, and school started for them a couple of weeks ago. It has been hard for me to be home all alone after having a constant companion for the last 8 months, but in a lot of ways it has been good for me as well. I am finally starting to really grieve for all that we did lose, but at the same time use the quiet time for self reflection and appreciation for all that God has given us.
With all that being said, I have to say that the transplant was the easy part. It is the after that has been the hardest to deal with for all of us. I think we all expected to wake up on March 12th the day after transplant and just have life be totally normal. That has so not been the case, it has been hard for each one of us. Somedays it is just easier to smile and say everything is ok, then it is to really relay the truth. I just ask for constant prayers that the Lord will continue to protect and love our family.
Again, we are all so grateful for everything everyone has done for us, even if it wasn't ever said out loud, those of you who really know us, and really know our hearts know how appreciative we are of everything you have done for us.
Wednesday, July 22, 2009
Out of the hospital
David called me around 9pm last night to tell me he was back in his room and had been discharged. He sees the cardiologist at 1pm today and I am anxious to hear what he has to say to him. He sounded good last night and in good spirits. Doug will arrive tomorrow night and we will get up early and head to San Diego on Friday morning to spend the weekend with him. Please pray for all of our hearts and for the Lord to be present because we are going to have a serious talk with our son...
Tuesday, July 21, 2009
Big sigh...
Apparently David is supposed to be discharged today from the hospital, but as of 7pm he still hadn't been... his white count and other blood tests were elevating at a good pace so they feel comfortable letting him go back to his room with some conditions. They are still running tests and waiting for test results for what could have dropped his white count and other items, but we have not gotten those results back yet. It could have been something to do with his medicines as well so they have messed with those and have lowered and changed some of the medications around.
Doug gets to my mom's house on Thursday night and we will all leave again on Friday morning to be down in San Diego with him this weekend. Doug wants to meet and talk to some of the staff down there and we all want to sit down with David and have a serious talk with him about his future and managing his care from now on. It is imperative that he gets a handle on it and stops fighting the changes that this new heart has brought to him. I know through God's grace it will happen, he has an awesome support system around him to help him and guide him.
Doug gets to my mom's house on Thursday night and we will all leave again on Friday morning to be down in San Diego with him this weekend. Doug wants to meet and talk to some of the staff down there and we all want to sit down with David and have a serious talk with him about his future and managing his care from now on. It is imperative that he gets a handle on it and stops fighting the changes that this new heart has brought to him. I know through God's grace it will happen, he has an awesome support system around him to help him and guide him.
Monday, July 20, 2009
July 20th, 2009
David will be in the hospital for a few more days... his white count went up last night but then in went way back down this afternoon. Stanford and the Navy hospital just does not feel comfortable with him leaving the hospital until the white count gets under control or until they have some answers. There are a lot of things that it could be and they aren't ruling out anything at this time. In some ways it feels like we are back to square one but on the upside he does have that awesome heart on his side this time.
I am hoping this will be a humbling experience for him as he sits there by himself in that hospital room. He has taken a lot for granted these past few months and I am hoping this is the reality check that he has so desperately needed. It is killing me not being by his side right now, and I will probably go down there by weeks end, but I also strongly feel that he needs to fight this fight in a different way this time. He knows that I am there to support him in any way that he needs, but he is having to do this in a different way this time.
As always I will keep the blog going as we get new information....
We do have a phone number for him, but we have asked that only people call him that we give the number to. If you have taken it upon yourself to "look" him up and call him please don't. We are getting back into a situation were too many people are calling him.
I am hoping this will be a humbling experience for him as he sits there by himself in that hospital room. He has taken a lot for granted these past few months and I am hoping this is the reality check that he has so desperately needed. It is killing me not being by his side right now, and I will probably go down there by weeks end, but I also strongly feel that he needs to fight this fight in a different way this time. He knows that I am there to support him in any way that he needs, but he is having to do this in a different way this time.
As always I will keep the blog going as we get new information....
We do have a phone number for him, but we have asked that only people call him that we give the number to. If you have taken it upon yourself to "look" him up and call him please don't. We are getting back into a situation were too many people are calling him.
Sunday, July 19, 2009
Back in the hospital....
I need to give you an update on David, I will do this in the best "time" frame that I know so you all are informed and know how to pray.
On Thursday at his appointment with the new doctor in San Diego David admitted to not feeling 100% earlier in the week, but he was feeling better at that time. The doctor said he wanted to run some basic blood tests so he could get a better feel of Davids condition and to see if there was anything going on because David had not been feeling well. When I say not feeling well it means he was light headed, dizzy, no appetite, lethargic, and just yucky feeling.
I saw David on Friday afternoon at noon and hugged him goodbye, we parted ways at that point. The Navy and Bonnie (Stanfords Nurse) called me at 2:30pm and told me that they needed to get a hold of David ASAP because they had just gotten the results of his blood work back and his white count had dropped significantly and to the point that they were very worried and wanted to run more tests. Apparently with his white count being that low he was at an extreme risk for infection.
Yesterday at 2pm they admitted David back into the hospital because overnight his blood count had once again dropped significantly and they were very worried about what could be going on and the fact that he could be at a high risk of exposure and infection. He is in an isolated room and I saw him finally last night at around 10pm. They are doing blood work continually and still do not have an answer. Yesterday they gave him a shot to fool his body into making white blood cells. This afternoon they did a chest xray and saw that he still has the spot on the lung that he has had since right after transplant. So because of that they also did a CT SCAN of his lungs to compare to the last one that they did at Stanford.
Once again my life is a waiting game, I came back to my moms today to wait this part out. Once we know what we are dealing with I will make some decisions from there. We really need prayers here, one for answers, and also David needs prayers so that he can start dealing with his condition in a more healthy way. He is in both denial and anger right now, and it is not healthy at all.
On Thursday at his appointment with the new doctor in San Diego David admitted to not feeling 100% earlier in the week, but he was feeling better at that time. The doctor said he wanted to run some basic blood tests so he could get a better feel of Davids condition and to see if there was anything going on because David had not been feeling well. When I say not feeling well it means he was light headed, dizzy, no appetite, lethargic, and just yucky feeling.
I saw David on Friday afternoon at noon and hugged him goodbye, we parted ways at that point. The Navy and Bonnie (Stanfords Nurse) called me at 2:30pm and told me that they needed to get a hold of David ASAP because they had just gotten the results of his blood work back and his white count had dropped significantly and to the point that they were very worried and wanted to run more tests. Apparently with his white count being that low he was at an extreme risk for infection.
Yesterday at 2pm they admitted David back into the hospital because overnight his blood count had once again dropped significantly and they were very worried about what could be going on and the fact that he could be at a high risk of exposure and infection. He is in an isolated room and I saw him finally last night at around 10pm. They are doing blood work continually and still do not have an answer. Yesterday they gave him a shot to fool his body into making white blood cells. This afternoon they did a chest xray and saw that he still has the spot on the lung that he has had since right after transplant. So because of that they also did a CT SCAN of his lungs to compare to the last one that they did at Stanford.
Once again my life is a waiting game, I came back to my moms today to wait this part out. Once we know what we are dealing with I will make some decisions from there. We really need prayers here, one for answers, and also David needs prayers so that he can start dealing with his condition in a more healthy way. He is in both denial and anger right now, and it is not healthy at all.
Friday, July 10, 2009
Going Home.....
Yesterday at 3:15pm we were given the final ok to go home.... I can hardly believe it.... I am totally stunned.... the day has finally arrived. Doug drove up last night after work to help us pack up the "homtel" and we should be leaving this afternoon to go home for good. It is very bittersweet. Don't get me wrong, I am VERY ready and excited to move back home, but a lot has happened to me and my family in this little town, this little homtel, and this little part of the world these past 7 months. That is a lot to finally walk away from. Saying goodbye to people like Bonnie yesterday and Paula were so hard on me. I know we will see Bonnie for our monthly visits but not having the security of her right down the road is a hard thing to let go of. And Paula, now that one was so hard for me personally, that woman sat by my side and held my hand during some of my darkest moments. She has been there since day one of this incredible journey and has seen it all with us. She has cried with us, laughed with us, and gotten mad with us. It was so incredibly hard to hug her yesterday and tell her goodbye, so I know that she reads the blog everyday.... So I am blowing you kisses Paula, you have no idea how much you have meant to me and my boy.
I laid awake until 4am last night replaying all of the events that have happened to us in these last 7 months and was once again shocked. I still have a hard time comprehending that David had a heart transplant, or that he was as sick as he was. I started thinking about the first phone call, the time in Hawaii, our first days in Stanford, his little boy laughs when he was trying to keep himself amused in the hospital, his weak and frail body, the day of the Jarvik surgery, the ICU stay, and most of all the day we got the call and the time we spent waiting for him during the heart transplant surgery. I started thinking about all the people we have met in person as well as over the Internet that have made this journey possible to handle. I am still dumbfounded of the overwhelming support we have gotten and the help and love we have received. It has proven to me that the majority of people in this world are good and loving, it has restored my faith in Americans and what we stand for.
Some people have told me that they are afraid that I have lost my identity through this whole process, and at first I was scared that could be very true. But then I really started thinking about it and I think that is incredibly wrong. I really believe that I have learned more about myself and who I am through this then I ever did before. I have regained such a strength in our powerful God, and I have learned that with him nothing is impossible. With that behind me I can do anything in this world and not be afraid. I strongly know that I am a better Christian, Wife, and most importantly Mother because of all this. I have gained confidence, self control, over whelming love, and peace. I have not lost my identity I believe that I have found it through this... it makes me shudder to think that might be one of the reasons why we went through this.
Many people have been irritated with me because a lot of the time I don't write about Dave in depth on these blogs... well I have news for you... this journey didn't just involve David. It involved his dad, me, and most importantly his little brother and sister. We all went through this with him and were affected by it, not just him. This journey threw our lives upside down these last 7 months, and I am a proud mama to sit here and say we survived it. Lots of marriages and families don't survive it, but we have Christ in our corner and that is why we did. Yes, this thing happened to David physically but the aftershocks reached out to the whole family... please bear that in mind.
On that note, David is doing really well. I have full confidence that he will handle this on his own and that he will manage his health care in a way that he knows he needs to. That being said, I also know that because he is 20 he will stumble and he will fall, but who hasn't. The reality of it is when he stumbles and falls it might be enough of a fall to make him sick again, but that is on David and how he wants to handle it. He still has high blood pressure and is now on an Ace Inhibitor as well as all of the blood pressure medicine and he still has high blood sugar so he is checking his sugar levels 4x a day and on a high dose of medicine for that. BUT, in our last clinic visit we got him off of 4 meds and rearranged his schedule so he is only taking meds 2x a day instead of 4. This was very good news and will make things a little bit easier for him to handle when he leaves here.
He has to report to San Diego on July 15th, I will be taking him down there, going to his first appt with him, and helping him get settled, then I will leave. Won't blog about how hard that will be right now.... They are telling us he will only have to be in San Diego for about 30 days, so we are praying that is true. He is anxious to come home and start a life again. We are going to do every thing in our power to add on to our house so that he has a little privacy and a place of his own to go too, so we ask for prayers in that regard. That it can be done swiftly, nicely, and with volunteer help and donations. Right now Dave plans on starting Junior College and wants to be a Radiology Technician.....
My son was dying 7 months ago.... I know without a doubt that his days on this earth were numbered. I also know without a doubt that my GREAT BIG GOD saved him, that the power of Prayer saved him, and the amount of people that loved him saved him. God chose David to save, that is almost to big for me to handle sometimes. I know it is too big for Dave to handle. There is something big in store for my boy... I just know it..... I love him so very much, my heart aches with love for him. Every single day I look at him and I am filled with love and I am reminded how close I came to losing him and it makes me want to hold him tight and never let go. Thank you.... all of you who prayed for us, held our hands in waiting rooms, hugged us, loved us, supported us in so many ways, and thank you Jesus for saving my boy.....
I laid awake until 4am last night replaying all of the events that have happened to us in these last 7 months and was once again shocked. I still have a hard time comprehending that David had a heart transplant, or that he was as sick as he was. I started thinking about the first phone call, the time in Hawaii, our first days in Stanford, his little boy laughs when he was trying to keep himself amused in the hospital, his weak and frail body, the day of the Jarvik surgery, the ICU stay, and most of all the day we got the call and the time we spent waiting for him during the heart transplant surgery. I started thinking about all the people we have met in person as well as over the Internet that have made this journey possible to handle. I am still dumbfounded of the overwhelming support we have gotten and the help and love we have received. It has proven to me that the majority of people in this world are good and loving, it has restored my faith in Americans and what we stand for.
Some people have told me that they are afraid that I have lost my identity through this whole process, and at first I was scared that could be very true. But then I really started thinking about it and I think that is incredibly wrong. I really believe that I have learned more about myself and who I am through this then I ever did before. I have regained such a strength in our powerful God, and I have learned that with him nothing is impossible. With that behind me I can do anything in this world and not be afraid. I strongly know that I am a better Christian, Wife, and most importantly Mother because of all this. I have gained confidence, self control, over whelming love, and peace. I have not lost my identity I believe that I have found it through this... it makes me shudder to think that might be one of the reasons why we went through this.
Many people have been irritated with me because a lot of the time I don't write about Dave in depth on these blogs... well I have news for you... this journey didn't just involve David. It involved his dad, me, and most importantly his little brother and sister. We all went through this with him and were affected by it, not just him. This journey threw our lives upside down these last 7 months, and I am a proud mama to sit here and say we survived it. Lots of marriages and families don't survive it, but we have Christ in our corner and that is why we did. Yes, this thing happened to David physically but the aftershocks reached out to the whole family... please bear that in mind.
On that note, David is doing really well. I have full confidence that he will handle this on his own and that he will manage his health care in a way that he knows he needs to. That being said, I also know that because he is 20 he will stumble and he will fall, but who hasn't. The reality of it is when he stumbles and falls it might be enough of a fall to make him sick again, but that is on David and how he wants to handle it. He still has high blood pressure and is now on an Ace Inhibitor as well as all of the blood pressure medicine and he still has high blood sugar so he is checking his sugar levels 4x a day and on a high dose of medicine for that. BUT, in our last clinic visit we got him off of 4 meds and rearranged his schedule so he is only taking meds 2x a day instead of 4. This was very good news and will make things a little bit easier for him to handle when he leaves here.
He has to report to San Diego on July 15th, I will be taking him down there, going to his first appt with him, and helping him get settled, then I will leave. Won't blog about how hard that will be right now.... They are telling us he will only have to be in San Diego for about 30 days, so we are praying that is true. He is anxious to come home and start a life again. We are going to do every thing in our power to add on to our house so that he has a little privacy and a place of his own to go too, so we ask for prayers in that regard. That it can be done swiftly, nicely, and with volunteer help and donations. Right now Dave plans on starting Junior College and wants to be a Radiology Technician.....
My son was dying 7 months ago.... I know without a doubt that his days on this earth were numbered. I also know without a doubt that my GREAT BIG GOD saved him, that the power of Prayer saved him, and the amount of people that loved him saved him. God chose David to save, that is almost to big for me to handle sometimes. I know it is too big for Dave to handle. There is something big in store for my boy... I just know it..... I love him so very much, my heart aches with love for him. Every single day I look at him and I am filled with love and I am reminded how close I came to losing him and it makes me want to hold him tight and never let go. Thank you.... all of you who prayed for us, held our hands in waiting rooms, hugged us, loved us, supported us in so many ways, and thank you Jesus for saving my boy.....
Monday, June 29, 2009
The Voice of the Lord
So, I have to admit for whatever reason the past few days I have been feeling very spiritually challenged. Not because of the people we are around, because these people are the most God loving people I have ever met, and this household radiates with God's love. But personally I am struggling with an internal battle that I just can't put my finger on. I have my suspicions as to what is causing it, but because I do not want to offend any one, especially my son, I will leave those suspicions to myself. I will say I am feeling very "dishonored" in the biblical sense of parenthood and I have been down on my knees all morning asking the Lord to help resolve those feelings.
A long time ago in a bible study that I attended at our old church one of the older woman told us that she read Psalms every morning. She had this little system that she read them by that correlated with the calendar, and I always thought that was so neat. She had told us that by doing this she was really amazed at how that particular Psalm would fit her day or how it would stay in her mind all day in preparedness for what was going to happen to her. Although I don't do this system every day, and I probably really should, I do it when I am feeling really discouraged or out of sorts. Today I sat down with my bible and an excellent cup of coffee and opened my bible to Psalm 29 (because today is the 29th). I am so thankful we have such an awesome God, because for those of you who don't know what Psalm 29 says here is just a piece of it, I encourage you to look it up today.
A long time ago in a bible study that I attended at our old church one of the older woman told us that she read Psalms every morning. She had this little system that she read them by that correlated with the calendar, and I always thought that was so neat. She had told us that by doing this she was really amazed at how that particular Psalm would fit her day or how it would stay in her mind all day in preparedness for what was going to happen to her. Although I don't do this system every day, and I probably really should, I do it when I am feeling really discouraged or out of sorts. Today I sat down with my bible and an excellent cup of coffee and opened my bible to Psalm 29 (because today is the 29th). I am so thankful we have such an awesome God, because for those of you who don't know what Psalm 29 says here is just a piece of it, I encourage you to look it up today.
"The voice of the Lord is powerful,
the voice of the Lord is majestic,
the voice of the Lord breaks the cedars"
Psalm 29 4-5
"The Lord gives strength to his people,
the Lord blesses his people with peace."
Psalm 29 verse 11
the voice of the Lord is majestic,
the voice of the Lord breaks the cedars"
Psalm 29 4-5
"The Lord gives strength to his people,
the Lord blesses his people with peace."
Psalm 29 verse 11
Like I said these are just a few verses, but again I was smacked in the head on how I need to sit quietly and listen to the voice of the Lord, because it is powerful, it is majestic, and more importantly it is so loud and wonderful that it can break the enemy and build up my spirit. The Lord will give strength to me because I am one of his people, and he will bless me with peace today, because he says he will.
Saturday, June 27, 2009
Washington
David was lucky enough to make real friends when he was growing up in Tehachapi. Not just friends that you see at the store and say hi once in awhile, but real honest too goodness friends that will last him a life time. One of those friends is getting married, in Washington TODAY. When we were first discharged from the hospital back in March, getting to go to Washington for the wedding was a big deal to Dave, he really wanted to be able to go and support his friend make this huge life commitment. The doctors saw no problem with it then but told us it would be all up to how he was doing by that time. Well..... we arrived in Bothell, Washington (about 20 min outside Seattle) on Thursday afternoon after a very long drive. I made the trip with Dave and the little kids, Doug couldn't make it because of work, but we had the best drive up here.
Seeing my son's face when we arrived and he was getting to see all his buddies for the first time since all this happened was one of the greatest moments of my life. I could tell that he instantly felt "normal". What a wonderful feeling that must have been for him, after all these months he finally is doing things again to make his life worth living. I have to say that the boy is impressing me with how well he is taking care of himself here. I was a little worried, mostly because when we get weekend passes home he pretty much throws caution to the wind and doesn't do what he is supposed to. But before we came up here he and I had a long talk, I love those talks with my boy, and he asked me to please help him stay on track. He knows he is not quite strong enough yet to do it on his own, and I was honored and pleased that he realized that and didn't feel ashamed to ask. We worked out a beautiful system together to keep the "peace" as far as his health is concerned, and I have to say it is wonderful to watch it work out.
David is doing just wonderful up here, taking his meds, his vitals, and his blood sugar as needed and not being a brat about it!! HAHA His friends are being so supportive and really show that they understand what he went through and that he can't do quite everything that they can yet. I was so proud of him yesterday, all of the guys were doing a bachelor thing, and that included paint balling. David stood up for himself by saying he couldn't do that, and the other guys were supportive and understanding. I can't imagine how hard that was for him to see all of them go and have fun doing that, but he made it work. He stayed back and visited with the people we are staying with, called a friend back in California, and just made the best of it. WOW! On top of that he called Bonnie because his blood pressure was high and he has never done that before without prompting! I wasn't even here, I had taken the little kids into Seattle. When I heard that my eyes welled up with tears, because I knew right then that he is going to be ok, and he is going to do what he needs to in this life to take care of himself.
Once again I am so amazed by what an awesome God we have, as I type this I am crying. He has used my son to teach me so very much these past few months, just as I have commented in the previous post. Yesterday I saw first hand that the Lord will guide, prompt, but most importantly take care of David always. And because my son is the strong Christian that he is, he has the spirit inside of him to listen to those promptings and do what is right. I have never felt such peace as I did yesterday. I finally felt comfort and realized that we are all going to be ok.
Through David I was introduced to some people he met in Washington, he used to date their daughter and when he was in the hospital the mother would call me many times and email many times. We developed a strong friendship these last 7 months through email, phone calls, and Instant Messenger on Face Book. I longed for the day when I could meet this truly wonderful woman that I can now call one of my very best friends, and that day came on Thursday. We are staying with her and her family here in Washington, and it just feels like home. It is so amazing how our Lord works, Michelle and I both know that she and I were meant to be friends in this life and that David was the vessel in which to make that happen. She, her husband Brian, and their three girls are such a big part of my life now, I can't imagine not having them in it. They love David so much, and that just makes me so proud and so happy that my boy has so many people that he can lean on for support all over this world.
Needless to say we are having a wonderful time, David is hanging out with so many of his friends that he has been missing, and he is just doing great here. The little kids are having a wonderful time on vacation with just mommy, whom they have missed so very much, and I am just in a state of bliss. I have all 3 kids with me and we are sharing some special times together, all of us. Today we will watch a young man that I have seen grow up enter into marriage, that just amazes me. I woke up very early this morning, that early Washington sun shining through the window, and I just prayed for them and their new life together. And I thanked my gracious God for giving my son the breath of life to be here to see this happen today. Isn't our God an amazing, wonderful God, I stand in awe of him, I really do. He makes all things possible in this life and I know I will never doubt him or the plans he has for me or my children.
Seeing my son's face when we arrived and he was getting to see all his buddies for the first time since all this happened was one of the greatest moments of my life. I could tell that he instantly felt "normal". What a wonderful feeling that must have been for him, after all these months he finally is doing things again to make his life worth living. I have to say that the boy is impressing me with how well he is taking care of himself here. I was a little worried, mostly because when we get weekend passes home he pretty much throws caution to the wind and doesn't do what he is supposed to. But before we came up here he and I had a long talk, I love those talks with my boy, and he asked me to please help him stay on track. He knows he is not quite strong enough yet to do it on his own, and I was honored and pleased that he realized that and didn't feel ashamed to ask. We worked out a beautiful system together to keep the "peace" as far as his health is concerned, and I have to say it is wonderful to watch it work out.
David is doing just wonderful up here, taking his meds, his vitals, and his blood sugar as needed and not being a brat about it!! HAHA His friends are being so supportive and really show that they understand what he went through and that he can't do quite everything that they can yet. I was so proud of him yesterday, all of the guys were doing a bachelor thing, and that included paint balling. David stood up for himself by saying he couldn't do that, and the other guys were supportive and understanding. I can't imagine how hard that was for him to see all of them go and have fun doing that, but he made it work. He stayed back and visited with the people we are staying with, called a friend back in California, and just made the best of it. WOW! On top of that he called Bonnie because his blood pressure was high and he has never done that before without prompting! I wasn't even here, I had taken the little kids into Seattle. When I heard that my eyes welled up with tears, because I knew right then that he is going to be ok, and he is going to do what he needs to in this life to take care of himself.
Once again I am so amazed by what an awesome God we have, as I type this I am crying. He has used my son to teach me so very much these past few months, just as I have commented in the previous post. Yesterday I saw first hand that the Lord will guide, prompt, but most importantly take care of David always. And because my son is the strong Christian that he is, he has the spirit inside of him to listen to those promptings and do what is right. I have never felt such peace as I did yesterday. I finally felt comfort and realized that we are all going to be ok.
Through David I was introduced to some people he met in Washington, he used to date their daughter and when he was in the hospital the mother would call me many times and email many times. We developed a strong friendship these last 7 months through email, phone calls, and Instant Messenger on Face Book. I longed for the day when I could meet this truly wonderful woman that I can now call one of my very best friends, and that day came on Thursday. We are staying with her and her family here in Washington, and it just feels like home. It is so amazing how our Lord works, Michelle and I both know that she and I were meant to be friends in this life and that David was the vessel in which to make that happen. She, her husband Brian, and their three girls are such a big part of my life now, I can't imagine not having them in it. They love David so much, and that just makes me so proud and so happy that my boy has so many people that he can lean on for support all over this world.
Needless to say we are having a wonderful time, David is hanging out with so many of his friends that he has been missing, and he is just doing great here. The little kids are having a wonderful time on vacation with just mommy, whom they have missed so very much, and I am just in a state of bliss. I have all 3 kids with me and we are sharing some special times together, all of us. Today we will watch a young man that I have seen grow up enter into marriage, that just amazes me. I woke up very early this morning, that early Washington sun shining through the window, and I just prayed for them and their new life together. And I thanked my gracious God for giving my son the breath of life to be here to see this happen today. Isn't our God an amazing, wonderful God, I stand in awe of him, I really do. He makes all things possible in this life and I know I will never doubt him or the plans he has for me or my children.
Sunday, June 21, 2009
Lessons I have Learned
In the education field you quickly realize that every moment is a teachable moment, no matter what you are doing. I sometimes wonder if that is how God feels about us... that he is constantly using every moment in our lives to teach us something, he is the ultimate teacher of all things. I for one have learned an incredible amount of things over the past 6 months. Things about myself as a person, the medical field, my family, the Lord, David, and so much more. When I really stop and think about everything that I have learned, even the little things it is really amazing to me. What amazes me and glorifies me is that our Lord uses every single thing in our daily lives to teach us, how great is that.
I have learned both big and little things in these past few months, so first I will start off with the little things....
I have learned both big and little things in these past few months, so first I will start off with the little things....
- I have learned that I really like Chipolte, even though I was sure I would hate it, David forced me to go there one day and now I am addicted!
- I have learned that you really can survive on a limited amount of kitchen supplies in order to cook meals!
- I have learned that pretty much everything we eat in America is unhealthy for us, and that has depressed me greatly.
- I have learned that time passes very quickly for someone that has nothing to do all day.
- I have learned that FaceBook is incredibly addicting, but so much fun.
- I have learned that with a GPS you can find pretty much anything at anytime.
- I have learned that pretty much all towns have 3 things that I can't live without... Starbucks, Target, and Costco.
- I have learned that pizza from "Pizza My Heart" is probably the best pizza in the world.
- I have learned that you can find a lot of happiness by just hanging out with your cat all day.
- I have learned that as long as you have a library near you and a great park, life can be very good.
- I have learned that God is with you ALL the time, ANYWHERE, no matter what.
- I have learned who my real friends are, and I treasure them so deeply, because without them I could have done none of this these past months.
- Sadly, I have learned who our real family support system is, and even though that makes me sad in some ways, I am so glad for the family that we do have in our lives.
- I have learned that people who don't even know us love us and care for us more then anything in the world.
- I have learned that my husband is by far the greatest man in the universe, he has done so much these past few months all on his own, I am in total awe of him.
- I have learned that you can truly function on very little sleep if you have to.
- I have learned pretty much everything is to know about Cardiomyopathy, the Jarvick, and a long term stay in the ICU.
- I have learned that the Lord will provide you with what you need and when you need it, no matter what it is.
- I have learned that I can and will make friends wherever I go, and I will always love them and they will always be a part of me.
- I have learned that John and Claire are two very strong little beings, and I am oh so proud of them.
- I have learned that NOTHING, absolutely nothing is more important in this world then your family, and when times are tough you need to stick beside each other and stand by each other with a loving heart.
- I have learned that prayer really does change things, you may not like the way it changes things, but it does change things.
- I have learned that I can feel Gods presence where ever I am.
- I have learned to accept the things that I can not change.
- I have learned to give up some of that control that I have had all my life and lean on the Lord and to trust in him.
- I have learned that I have an amazing support system of family, friends, church family, and co workers.
Thursday, June 11, 2009
90 days = 3 Months Post Transplant
Can I just say YAHOO!! I mean really.... we have made it to that glorious 3 month mark and I am oh so proud of my boy! He has had some pretty big stumbles and the fact of the matter is he still will.... but he has made it 3 MONTHS PAST TRANSPLANT. This is a big deal... the next biggie is 6 months and then the next one is 12 months.... I can't wait for those days... it will be oh so wonderful. He is such a great kid... I just love him so much. Really, I wish I could squeeze him and tell him that every single day... but big sigh... he is also a 20 year old man and isn't too hip on the old mom squeezing and loving on him ALL the time.
He got to say "adios" to the mask today... and that was a big step. Even though he will still have to wear it to the hospital for visits and anytime he is around construction or open fields... for the most part it is gone... and with that presented a whole new lease on life for him. I saw it in his face this morning. He was given some challenges to do this week and I really think he has changed his outlook some and is going to do them... I am praying. I also know that we have a very AWESOME God and he will do AWESOME things.... he already has. I am just excited to see what he has planned for this journey next.
I want to write more, but I am oh so tired. We had a long day at clinic today, which began very early, I still have the little ones with me... and I am just tuckered out. For those of you praying for our dear Claire, she is going in on Monday morning to have an Endoscopy done as well as a Colonoscopy done to see if they can get some answers and more test results. She will be put under for both of these procedures, but none the less it is not going to be a fun day.
So I am signing off for tonight.... but I just couldn't let this FANTASTIC 90 DAY mark go unnoticed on the blog... I am so happy, over joyed, filled with Gods never ending love, and SOOO SOOO proud of Dave for making it to this milestone....
He got to say "adios" to the mask today... and that was a big step. Even though he will still have to wear it to the hospital for visits and anytime he is around construction or open fields... for the most part it is gone... and with that presented a whole new lease on life for him. I saw it in his face this morning. He was given some challenges to do this week and I really think he has changed his outlook some and is going to do them... I am praying. I also know that we have a very AWESOME God and he will do AWESOME things.... he already has. I am just excited to see what he has planned for this journey next.
I want to write more, but I am oh so tired. We had a long day at clinic today, which began very early, I still have the little ones with me... and I am just tuckered out. For those of you praying for our dear Claire, she is going in on Monday morning to have an Endoscopy done as well as a Colonoscopy done to see if they can get some answers and more test results. She will be put under for both of these procedures, but none the less it is not going to be a fun day.
So I am signing off for tonight.... but I just couldn't let this FANTASTIC 90 DAY mark go unnoticed on the blog... I am so happy, over joyed, filled with Gods never ending love, and SOOO SOOO proud of Dave for making it to this milestone....
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