Friday, January 30, 2009

January 30th, 2009

We just saw the doctor and he gave us a little more information on what is going on. They aren't going to start taking him off the IV drug until Sunday or Monday, at that point they will start slowly taking him off the drug a little bit each day, no more then 1mg a day, taking about 4 days to get him off it totally. By doing it this way they can closely monitor how he is reacting to getting off the meds. Then they will wait 24 hours before trying the new meds, to give his system a rest. Then they will try the new drug and watch him closely before making a final decision. So we will be here for AT LEAST another week.

Thursday, January 29, 2009

January 29th, 2009

Not much happening today, just a waiting day in most respects! He is hanging in there with this new IV drug and I suspect tomorrow is when they will start to make some other changes in his routine. We just hung out today, basic conversation, he played his game, I read my book, and we take turns making fun of the comings and goings around here:)

Wednesday, January 28, 2009

January 28th, 2009

Some good news today, the doctor really likes how Dave is responding to the new IV drug, so he wants to try the other meds one more time before making a decision. He will probably wait until Friday to try that again. So here are the two possible scenarios at this point.

A) If Dave responds well to the drugs they will insert a pace maker and a defibrillator into his heart to keep him from "sudden death", then they will send him home to basically wait it out until we can't wait it out any longer, his heart gets worse, or he just doesn't recover in a timely basis. With this plan he will not be on the transplant list.

B) If he doesn't respond to the drugs again, they won't waste any time and will put him right on the list as the highest priority for a new heart.

So right now it is a waiting game, we will know more after they start him on the other meds this weekend probably. He had a really good day today, color in his cheeks, eating well, peeing out that fluid, etc. He said he felt really good today as well, not as sluggish. So lets see how this plays out.....

Address and Contact Information

Lots have been asking for an address for Dave, we finally have one available!

Stanford University Medical Center
Attn: David Kennedy
300 Pasteur Dr
Stanford, Ca 94305

Phone # is 650-498-3167

We would really like it if you could contact us by the hospital phone as the cell phone bill is starting to add up!

Last Night's Visit

So, the Doctor came in late last night to tell us that the test results showed that Dave's heart is only acting at about 8-10%. As well as that he has not been able to take the one "needed" drug to make his heart function outside the hospital. Doctor Fowler said this was disappointing to him because he helped create that drug. :) So right now he is "shocking" his heart with this new IV drug and then we will see how he reacts, but Doctor Fowler said the idea of treating this with medicine is quickly fading and he is pretty positive that a transplant will occur. We should know the outcome of this in the next day or so. If they put him on the list like they are anticipating we will not be able to leave the hospital, he can't function without these meds. The doctor is hopeful that we will get a heart as soon as two weeks.

Tuesday, January 27, 2009

January 27th 2009-- more info

So the coolest thing happened today, the social worker came in and told us she would really like Dave to talk to some other heart transplant people, so he could ask questions and etc. Well low and behold she found someone who not only had idiopathic cardiomyopathy but also was an officer in the Navy. Her exact words were "God works in mysterious ways." He came and talked to Dave for about 30 min today and answered a lot of Dave's questions about the transplant and how it is afterwards. What a great thing!!

Another cool thing that happened this morning, Dr. Fowler is so intrigued by the way that Dave's heart sounds that he asked if we would mind if some Med students came in and took a listen, he said "It will be a bit like Greys Anatomy in her for awhile". About 5 students came in and listened and were just as intrigued as Dr. Fowler. Dave looked at me after they left and said, "what can I say I am an enigma."

Tuesday January 27th 2009

Ok, so here is where I will begin our daily blogs, or more about Dave's journey through this time.

Yesterday they did an MRI, which showed that the heart was a "bit more sluggish" then it ought to be according to the doctor. Then today they did a cardiac cath and a heart biopsy, which once he came back he told me that "it was pretty cool to watch." NO THANK YOU! Mom waited in his room for him to come back. At this point Dr. Fowler told him that everything was as he assumed it would be. Not sure what that means exactly and I hope that he comes in soon to explain that. :) We will have to wait a bit for the results of the biopsy. They are going to start him on Dubutamine later today or tomorrow, and that can only be given through a central line or a PIC line, since he doesn't have a central line already they will start a PIC line in his arm so that they can start him on that particular heart medicine.

We had a nice long talk today with the transplant social worker and went through all of the logistics of that and what to be prepared for during that process, right now it looks like that is the way we will be going, but we will know more after the tests are done.

I will post again today if there are any big changes.

Getting Caught Up....

When Dave came home for Christmas on leave for 12 days, he came home with a really nasty dry cough. He told us there were no other symptoms, but this cough was horrible and at times he coughed up blood. Doug and I both got after him to see the medic before leaving out to sea on the 9th of January. He said that he would, actually promised me, mainly because I think we all knew he just didn't feel all that great.

He went to the medic, and by the looks of him he just looked and at that point sounded like just having an upper respiratory infection, so they treated him with some meds and sent him on his way. Later that evening he started vomiting and that continued for 2 days until they finally sent him to the ship hospital. At this point his ship had already left port and was out to sea.

In the ship's hospital they hooked him up to IV fluids because he was so dehydrated, and at the same time upon the initial exam he appeared to have pneumonia. They began treating him for this, and spent the next 5 days in the ships hospital trying to get over what they thought was just a bad case of pneumonia. Then on the 15th of January the ships doctor finally heard a "weird" sound in his chest and at this time he had become very swollen and puffy, full of fluids. This is when they decided he needed to be moved to an actual hospital where he could be monitored and have the sound checked out.

We had NO idea any of this was going on until the late evening on January 16th when we received a voice mail from a very weak sounding David. On the message he told us he had bad pneumonia and that they were taking him to the hospital. Yes, you can imagine what the next 12 hours were like for us until we got to actually talk to him. Then late in the afternoon on January 17th the cardiologist from the Hawaii hospital called and talked to Doug and told him that the prognosis was not good and that we needed to get to Hawaii as soon as possible.

When they admitted David, he had 32 pounds of just water weight on him and his heart was beating at over 200 beats a minute. He was not doing well at all. What the doctors believe happened is this, when his cough first started that was the signal that he was going into Heart Failure. Because he then went into Congestive Heart Failure is heart stopped pumping the fluids in his body out, so his lungs filled with fluid causing it to look like pneumonia and sound like pneumonia. As well as his bowels and stomach were swollen with fluid and that was why he started vomiting. Then because the ship doctors had no idea that this was going on they treated the dehydration with more fluid, which could not be pumped out, so he just literally "blew" up with fluid.

At this point they are diagnosing David as having Idiopathic Cardiomyopathy, basically that means this type of heart failure has no cause, it happens without reason to some people and our Dave is one of these people.

After spending 6 days at Tripler Medical Center in Hawaii he was flown out on a Lear Jet with a medical team of 15 to Stanford University. He has now at Stanford and has been since Friday the 23rd of January.