The last 24 hours or so have been good medically, but challenging for Landon. Yesterday after I posted, he threw up most of what he had been drinking all day so that was less than ideal, although not a major setback. He seemed to feel a lot better after he threw up at least. Last night he did not sleep well at all. He woke several more times than the night before and just didn't want to sleep. We're not sure if he got his days and nights mixed up since he rested a lot yesterday or if he's gotten anxious about the constant medicine and unpleasant things he's had to endure. He also still has chest tubes in which are very uncomfortable so that in might be enough to keep him from getting comfortable enough to sleep. Regardless of the cause, it was a tough night for all of us since we were up with him quite a bit. Then after he woke up this morning and ate and drank a little bit he threw up again. Both times were after taking oxycodone which needs more on the stomach than he's had so far I guess.
Today he still didn't rest much but took several short naps here or there. He kept starting to fall asleep and then jerking awake. Again, not sure if it's anxiety or discomfort or what but we're going to give him some melatonin tonight to help him sleep. He's become very wary of anyone who comes in the room and gets pretty upset at the slightest assessment (understandably so).
Despite his discomfort and lack of sleeping and eating, he's doing very well on the medical side of things so today they moved him up to the Cardiac Progressive Care Unit (CPCU - aka "the floor"). This is a huge step in the right direction and somewhat of a suprise that it happened so quickly! This is where we will be until he's discharged and it's just quieter and more private than ICU and hopefully will allow him (and us) to rest better. So far in the last 2 days he's gotten out he's arterial line, an IV in his neck, one of his 3 chest tubes, his oxygen (huge YAY on this one - he hated it so hopefully he won't need it back before we leave), his temporary pacing wires, and his Foley Catheter. His still has 2 chest tubes (which we hope to get out tomorrow) and an IV in his foot which will probably stay in up until we leave and of course his leads which may be annoying but aren't really painful. They took a look at his incision today and it looks great (really, it does!)- no concerns there right now.
So we're only post op day 2 - there is a lot of ground to cover - Landon needs to be eating and drinking well and have some nice clear xrays and I'm sure several other milestones I'm not even aware of right now before we can go home. He's taken it about as well as you could expect for a 2 year old who's been through what he has in the last few days. It's amazing to see little glimpses of his personality come through the downtrodden little guy we've seen over the last few days. Just hearing his voice and hearing him say little typical phrases is encouraging and reminds us of our energetic happy little boy who will hopefully very soon be back to himself!
A hospital is about the last place you can be all "woe is me" about yourself or your loved one because it's very unlikely you have it the worst out of everyone in the whole place. There have been a LOT of newborns in the CICU in the last few days and it makes me choke up just seeing them and remember the roller coaster that each day brought when Landon was so little. Each "setback" at that age is extremely serious and we are so grateful for all that God has brought Landon through over the last 2 years. I briefly met a couple today in the CICU whose little boy is only 2 days old and was born at 34 weeks. He's quite literally fighting for his life and according to them things were looking pretty bleak. Please say a prayer for Caden and his family that God would heal him and speak through his life. As far as I know he is scheduled to have surgery on Monday but I'm not sure the details of his medical condition.
We are also so grateful to be in a hospital that has both an ICU and a stepdown unit dedicated to heart kids. Treating kids is often very different than treating adults and to have an army of doctors and nurses who understand so much about Landon's diagnosis and how to treat him is a huge blessing. They are so specialized in what they do and are excellent at it. Today and yesterday were hard, but we were blessed to have one of our favorite nurses from 2 years ago care for Landon yesterday and another phenomal nurse today. If this post sounds a little bit bipolar it's because that's how I'm feeling. I am so proud and amazed at how quickly Landon has progressed and so happy to have him one step closer to home. At the same time it's been heart wrenching to see him in pain and discomfort and confusion that we can't always do something about. We trust that God will give us the strength for each day and so we have to trust he will do the same thing for Landon.
Thanks again for your prayers - sorry the posts are much less frequent (and much longer) than surgery day but we will try to continue to post at least daily to keep everyone updated on Landon's progress.
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This is Gary here. Allison has said just about everything that I could say, but I did want to add one thing. Thank you so much for your prayers for Landon, but also thank you for the prayers for our family as a whole. I feel like this time much more than the other two times Allison and I have been on the same page on just about everything in terms of Landon's treatment and our communication has been good. We are still making tough choices everyday, especially when it comes to his pain management, so it has been critical for us to be in sync. Thank you. It's not of our own doing for sure.
Good news.
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