Home Again, Home Again...

We're all home! We made it! 5 days (which I realize does not sound like much to people who have spent months in hospital), 3 in total isolation, and we all came out relatively unscathed. I did not have my camera while we were at the hospital, so can't post any adorable pictures of Tony P. in his open-backed robe, but feel free to use your imaginations. Just picture a little boy, used to being incredibly active, being confined most of the day and night to a bed, and you'll quickly get the idea of how happy he was to be there. I need to say again how thankful PWL and I both are to everyone who was kind enough to come by and see us, or call our family, or help in any way, and to everyone who kept us in their prayers. I really felt the support of many people while we were there, and I am so grateful for that.

And now for practical matters...

The update with Tony P's health is that the pediatricians and cardiologists all agree that the respiratory tract problems he had this time, as well as the past infections he's had, are all stemming from the problem he has with his heart. I will explain this in technical terms, so if anyone is not interested in reading this part, skip ahead to the end. He has a VSD and a PDA, which means that he has a hole in his heart and problem with his mitral valve (see the picture below). Right now, the hole in his heart is not the primary concern, although when they did an echocardiogram (an ultrasound of his heart), they discovered that the hole is quite a bit bigger than we had previously thought, based on what his cardiologist had told us in the past. The hole makes it more difficult for his heart to pump at full capacity, but the more prevalent problem is that he has a narrowed mitral valve. This is causing his heart to pump blood into his left atrium, but not to get it down to the left ventricle and out to the rest of his body. As a result, he has pockets of fluid built up in his lungs from his heart not being able to push the blood out fast enough, as well as an enlarged liver, and possibly spleen.


So the question is, what are we going to do about all of this? If we continue to leave things as they are, every time he gets sick, his lungs will be the first thing to suffer, and he will exhibit asthma symptoms and they will treat it as such. (Which, by the way, seems to be working as a short-term solution, as he is breathing much better now than he was on Friday). However, if the heart is the reason for the breathing difficulty, then something will have to be done about the heart. Everyone is in agreement that he is going to have a heart "cath" (funny how I think I'm so cool to call it that instead of a catheter, but unfortunately, catheters remind me of having babies, so I'll stick with health lingo and call it cath for now). That means they will stick a catheter up through his femoral artery all the way to his heart and inject dye to find out how much pressure is being put on the left side of his heart. Then they will know if the problems with his lungs and liver are associated with the heart or if it's something different entirely. The pediatrician who was following his case in the hospital is quite certain he never had pneumonia, and that all of these symptoms are indicating there is something wrong with his heart, but his cardiologist wants to rule out all other possibilities before proceeding. And if they do determine it is his heart, then decisions have to be made about treatment. Will they replace the mitral valve? And if so, will they do that right away or will they wait until he's older so they don't have to replace it with a bigger one later on? Will they repair the VSD while they are there? These are all questions that we don't know the answers to, and won't know until after the cath.

And if you were skipping all of that part, start reading again here. We are very happy with the answers that we did find while we were there. We are pleased that they are looking into this further, and that we aren't being sent home again with no answers. We are nervous about the findings from the cath, and I am particularly concerned about how much responsibility the doctors put on the parents to monitor their child's day-to-day health. They kept telling us that we should bring him in if we started to see any change in his energy levels or breathing, but to be honest, we almost didn't take him to the hospital on Friday because we thought he was just tired and needed sleep. I'm worried that I'll miss something, and that if something happens, it could have been prevented by me being more vigilant in his care. I know that's ridiculous, but since this is my blog, I can write that. For now, he is much improved. He is on a few more days of antibiotics, and they want us to continue the steroid puffer until he has his cath, just to make sure he doesn't have any breathing problems that might interfere with the procedure. But other than that, we're back to normal life here, crazy as it may be.

So that's the update. It's also my journal entry, so I apologize for the lengthy post, but hopefully it will provide answers to those of you who were wondering, or else a little light reading for those of you who skipped the boring stuff.

Thanks again to everyone who was praying for us and thinking of us. We love you all.