Wednesday November 18th
Today has been good so far. I was able to get one of the parent rooms last night, which was So good. I was totally exhausted. I went to bed around 10 PM, and I ended up waking up at 3:30 AM and not being able to really sleep (this in part is because I have weird dreams about Jack. When I was home I had dreams all night about him getting his feeding tubes, and last night I can't remember exactly what it was, but it was something similar), so I decided to go check on Jack. He had just fallen back asleep after having a bit of a throwing up spell. They figured out it was because he hadn't been burped, which I had never even thought about! But since his feeding tube is going into his stomach, he got a little gassy, and his tummy got pretty big, and just just didn't feel good. So, the nurse got that all taken care of and he was feeling better. Besides that there wasn't anything super new going on. I spent about 30 minutes with him, then headed back to bed (and couldn't sleep for a while after, but whatever).
I got into Jack's room this morning around 8:30 AM, and he was gone. It took me a second to realize he was most likely getting his CT Scan. Another nurse (I guess she's helping Jack's nurse today) told me that he was indeed getting his CT Scan. Once he was back, one of the people from neurosurgery came in said things looked good, and asked if I wanted to see the scan. She showed me his scan from today compared to the 15th and it was so interesting to see. He's improving greatly. The blood is going down, the air that gets in from surgery is less, and his ventricular are smaller (they were bigger b/c of the fluid that had built up, so the smaller they are the better -- well, to an extent, for now we want them to get smaller, lol). So, that is good news.
It sounds like they are just going to get his milk intake up a little bit (he had to be lowered last night after having the gas issues), and then they'll try to give him a bottle with the thickener and see how he does! So that is great news.
Jack did take the bottle with the milk and the thickener really really well. They were pleased with his sucking and everything. After his feeding I got to hold him for a little while. He'd been a little bit fussy, and I got him to fall asleep a little bit. I handed him off to my mom, and I think the movement just woke him up. We got him calmed a little bit again, but as soon as he was down, he cried. Poor little Jack cried off and on for about 4-5 hours yesterday afternoon. It was a super rough afternoon for him and I. The great news is that Jack was released from the PICU. He is now in the IMSU (Infant Medical Surgical Unit).
When we got up to the IMSU, he was pretty much scream still from whatever he was screaming about down in PICU. They poked and proded like they do around here, then left him alone. We gave him some bottles and that didn't seem to help. His cry just seemed to be totally uncomfortable, and miserable and tired, and whatever. Well, he finally went to sleep. Super great! Well, around 10:00 PM - 10:30 PM he started up again. Just not feeling super good, crying and totally not consolable. I think this is one of those times where it's super hard for me as a mom. I know exactly how I could hold him that would help him. I can hold him and help him, but because he has the brain fluid drain, he can only be held with permission, and only for 30 minutes at most! So really, I can't help him, not the way he needs me to help him. The nurse gave him some gas drops to see if they'd help, and they gave him some Tylenol. Dale and I at this point just told the nurses to try what they could an wanted, and we were going to go to bed.
I woke up a couple times a little bit, and saw here and there people working with Jack and whatever. I was alway too tired to actually get up. I figured they'd wake me up if I needed to know something super important.
This morning (Thursday) I woke up around 6 AM and went to talk to Jack nurse. She said last night they just could not get him to calm down. She finally called the doctor who came in and saw him, and they put him back on the morphine. He'd been weaned off as of Tuesday, and trying to just give Tylenol as needed (in fact yesterday they told us they'd discontinued that order even). Because he was put on the morphine last night, his feeding tube feedings were brought up to higher levels (the lower the level, means that he's doing great eating from the bottle, which he is, but since the morphine just kind of puts him out, he needs that extra from the tube right now). I was totally fine with this choice. He was having such a rough time, and really, my baby needs to heal. He needs to rest, and he needs to get better so he can be home with me again. He's still doing really well. Obviously we're not in the PICU any more, so that is a HUGE step forward. While the morphine and the feeding tube aren't forward, they will help him get forward. We're hoping that once the drain is out it'll make it a lot easier to hold him, and console him. He was held a LOT yesterday and moved around, etc. I really think it just was too much for him. I think he just isn't used to being transfered around, and moved that much, and I think it was too much on his little head, and his little body right now.
I just have to say I think my little Jack is such an amazing little boy. It brings me to tears to think about. He's such a little fighter. I'm amazed at this trial that he has been willing to endure while in this life. It's huge. I know there are things that could be harder and a lot more life long conditions. I don't think he'll have to really worry too much about this as a life long trial as much as a right now one. He's just so tiny though, and it's hard to see him like this every day. He really is great, and amazing, and I am so glad that we've been able to help him through it. It's been amazingly humbling over and over and over again. It's been hard, and so spiritual at the same time. There have been a lot of crazy adrenalen rushes (lol, like finding out at 3 AM that your 10 day old would be having brain surgery, so hard to find out, but it keeps you up), and so many exasting moments.
Please keep little Jack in your prayers. Hopefully we'll be able to come home in the next couple of days. Until then, here are a few more pictures from today (okay, yesterday).
This is in the morning. I just love how comfortable he looks and just sleeping good.
Preppin' Jack for his bottle. We have to make sure that he's sucking good first.
Here is what the stitches look like on the back of his head that they actually did for the brain surgery.
Leaving PICU!
So glad when daddy comes ... to the hospital! This was the first time Dale got to hold our sweet baby since last week when we were waiting for Life Flight to take him here.
Feeding Jack.
1 comment:
I love that he gets to use his blankie again! He's looking good :)
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