Wednesday, December 29, 2010
Well it's 10 pm here and it's been a LONG day...that still isn't finished. Liam is doing really well. He remains OFF the vent, which is a HUGE praise. We still are not completely out of the woods on this yet, but the prognosis is good that he will stay off. He is on the "turbo" oxygen machine (I forgot the appropriate medical term they called it) that is pumping in 14 liters of oxygen at 100% concentration...pretty strong. In fact, in my opinion, I think that is what he is most uncomfortable with right now. He is still pretty heavily sedated, but he fights it a lot of the time....so our main role this afternoon and evening has been to not let him get out of control and keep him as calm as possible. Once he starts getting agitated and mad, his respiratory problems get worse. Although the blood gases they have been getting back have been completely normal and really good, he is still working hard to breathe most of the time. Their plan for tonight is to let him rest and not mess with him unless absolutely needed...I second that motion for sure!
The surgeon was able to see what was causing the stenosis, or narrowing, of his homograft conduit. He said there was a build-up of scar tissue, and actually said he had never seen a case like Liam's with as much scar tissue as he had. They will be sending his old homograft off for some testing, but I'm not really sure if there are any results we'll be getting from that. It didn't sit well with me that the surgeon "had never seen this before", but he did explain that this could have been an early stage of calcification, and that most often he doesn't see this stage of that process. I guess no one likes to hear that they are the only case of something gone wrong...but our hopes and focus are now on the new Contegra conduit they put in. Thankfully they were able to move up substantially in size, which gives us more time before his next surgery, when he will eventually outgrow it.
This has been a whole different experience than our previous surgeries. We are in the new heart unit, which is set up a little differently (mainly for me, the restrooms are outside the unit, down the hall by the main pediatric waiting area). But the main factor is Liam....boy how 6 months can really grow-up a child fast! He has turned out to be a strong feisty one! He has been aware of a lot going on today. I guess because last time, he was sedated to sleep for the first few days after surgery, so we never had to deal with the pain aspects. Now, Liam is awake enough to recognize the pain and discomfort, so that has been hard to manage for us. I realized there is little time to leave his bedside as he is in constant need of quieting and comforting...and rightly so. He is visibly cranky, hungry, tired and just plain miserable right now. And it is really hard to not be able to do much about it. Praise God he has had a good 20 minute stretch these past few minutes of no flailing around or crying....the longest he has gone all day.
I'm sure there is more I want to share...just can't think of everything right now. I am off to google the scarring thing, and then hopefully maybe catch a few hours of sleep. Will update in the morning, goodnight!