another Ayden update

Well, I logged in another day at the hospital. This time mom was able to get off of work to come up with me. We were there from 11ish to around 7 (with the exception of the time we spent running a few errands to help out)

I'm exhausted. Physically because I didn't get enough sleep last night because I stayed up until 3 am. And mentally, as watching a 4lb baby have seizures isn't exactly good for one's mental health. Honestly, I don't know how people do it. I was there for a good chunk of the day and it's absolutely exhausting. You can't relax; you have to be on your toes, checking monitors, watching for signs of another seizure. You can't leave the room unless someone is there to take your place. How do people do this day in and day out? I'm lucky that at the end of the day I can go home and relax. (As much as one can relax right now, anyway) But the parents, they don't get that luxury. They must remain vigilant, take care of other children, and tend to issues at home and perhaps at work. It's amazing.

That being said, I was happy to get to spend pretty much the entire day watching over him. Some of the things that I saw weren't pretty, but it was that much extra time I got to have with him. So, all worth it.

I am supposed to be going out of town this weekend, and while it's still scheduled to continue, I won't really make a final decision until tomorrow afternoon. I certainly won't be leaving town if things get worse, that's for sure. But right now I think things are stable. He's at least not getting worse!

Today there were NO blood transfusions, at least up until 7pm. His platelets levels were practically tripled compared to yesterday. Which is very very good. Obviously good enough to not need the transfusions that he was getting every 4 hours yesterday. His color was better and he was less swollen. He was moving more and certainly more awake and alert than yesterday as well. He showed a tiny improvement in his reflexes, which the infectious disease doctor was quite pleased about. He was also happy to see that he was reacting to stimuli such as lights, touch and sound. He had his eyes open A LOT today and even moved his head and his eyes to follow his mommy while she was talking. Oh, and he smiled when we tickled his leg!!

Those may be little things, but it's all we have. Hope comes from those little things. And hope keeps everyone going.

On the negative side, he had quite a few seizures today. He didn't have any while I was there yesterday, but I witnessed quite a few today. You don't know pain until you watch a tiny baby have a seizure. Granted, his were very very short (I'm talking 10-15 seconds) it's still agonizing knowing you can't do anything. Seizures are caused by brain swelling, so :(

Speaking of brain swelling, Ayden may need to have surgery at some point due to the swelling. I'm sure you guys know that when you're a baby your skull is not completely fused in order to be able to fit through the birth canal. Well, when he was born his skull contracted for birth but remained stuck afterwards instead of pushing back apart. It may 'un-stick' at some point, but it may not. Hence, surgery.

They did also decide to give Ayden a little more direct oxygen. Since he's been there he's been breathing on his own, but struggling at times. He's had a little mask that keeps air flowing near his face, and that we sometimes have to pump when his breathing gets too shallow. Today his breathing dipped more times than they were comfortable with, so they gave him one of those little oxygen tubes that sit just inside your nostrils. I'm drawing a blank on what it's actually called. Not a respirator, just delivering oxygen directly into his nose. They're really really trying to avoid a respirator, so we're hoping this will help. They say there are a few other options to try before hooking him up to anything, but let's hope this does the trick.

We met several new people today (well, they were new to me, I'm not sure if anyone else met them prior). There was an art therapy lady who came to offer her services for the other kids, plus just a regular therapist. Obviously things like this are super difficult on siblings, so they do the therapy to help them cope. Which is nice. Alex and Evan (who are 4 and 3, respectively) got to visit today. They were excited to see everyone and were very interested in all of the things Ayden was hooked up to. They didn't seem to be scared at all by any of it, more inquisitive than anything. They wanted to make sure all the stuff was helping Ayden's boo-boos.

There was also a group of people I believe who were called Helping Hearts/Helping Hands (or something to that effect). Which is a group that offers palliative care. A quick Wikipedia search tells me that palliative care is "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness." So, a group of people who help you prepare, basically. Be it end of life hospice care or preparing one for the future (in Ayden's case, there's a potential that they'll need to prepare for life with a special-needs child...although of course that is yet to be seen.) I wasn't there for the meeting, but was told by my sister in law that they downplayed the other doctor's optimism. They still are trying to prepare us for the possibility that Ayden will not make it. Of course that is a fact of life, and I understand that it's the hospital's responsibility to present and help you deal with both outcomes. But, we are trying to focus on the good. Not being delusional, but right now we just don't see a reason to give up hope.

One of the ladies from that group took Alex and Evan down to pick out some books. Apparently people who shopped at Borders during Christmas donated new books and puzzles to Kosair for families of sick children. So they both got to pick out a huge stack of books to have to read and play with while they were there. The books are new and they can keep them. Either to take home or to keep at the hospital while they visit. And if they want more, they have tons to choose from. They were so stoked about that. I almost cried when they came back with all the books. It was so nice for the boys to have (although we had to practically drag them out of the hospital because they wanted to take ALL of the books with them instead of leaving some there to play with later). People can be amazing and wonderful when they want to be.

Today they also upped Ayden's formula from 1oz to 2oz. Which he did well on until right before we left. He was fed at 4 and then vomited it all back up around 6. So, they think perhaps their feeding schedule was a little too aggressive. So now it's back down to 1oz every 2 hours (instead of 2oz every 4 hours)

And I think that's about all the major points from today. I'm really tired and still have to eat and pack before bed. I have to work early tomorrow so I can get out of town at a decent time. If I remember anything else, I'll be sure to update later.

<3