Day 38

We've had another roller coaster kind of day... I've about had it with these. Around 5am, he decided he wasn't going to be comfortable anymore. He's dozed off and on all day, but he can't seem to get any good comfortable sleep... That means he stays sleepy all the time, and we don't have any alert periods to play with him. Not that he'd feel up to playing anyway... We were expecting his lipase to go down today since they stopped the feeds, and instead they've doubled, to 2848. As expected, he seems to be in a little more pain. They've called in a GI consult, but we won't talk to them to see what they've decided until tomorrow morning. His ultrasound didn't show any gallstones, but did show the duct to be a little enlarged. I'm not really sure what that means just yet, but hopefully they'll be able to answer my questions in the morning.

He's also had more trouble with his breathing today, especially compared to how well he's been doing in that area the past week. His chest x-ray this morning showed more fluid in his lungs, and his oxygen saturation has been up and down. He also seems to be working harder to breathe, and breathing faster. They've upped his diuretics and turned his O2 back up for now, and hopefully we'll get it all under control before it becomes a major issue.

Adults who can describe pancreatitis say it's incredibly painful, especially once the numbers start getting so high. He's only had to have one dose of morphine all day, and I don't know how he does it. I'm sure I'd be crying for drugs 24/7 if I were him.... He's such a tough little man!!

The last low of the day, and I'll move on... Another family with us in the CICU was told today that their little boy isn't going to make it. Please keep them in your prayers tonight, as I can't begin to imagine the grief they are feeling this evening.

We did have a few ups today as well... My mother-in-law took me to the mall to get the girls some Christmas presents, and we went to lunch. I'm still not a huge fan of the pre-Christmas crowds, but it was good to get away for a little bit. Besides, I'm pretty sure my girls didn't want a box of surgical gloves as a Christmas present. My friend Michelle was here when we got back... Her visit made my day! I hadn't seen her in so long, and she didn't have a cute pregnant belly when I saw her last either. I was so excited to finally get to sit down with her and catch up. (And I'm pretty disappointed in myself for forgetting to have her sign Holden's heart pillow.)

So those are the highs and lows of our day in here... One of these days, we'll have more highs than lows. :)

I can't believe how long his hair has gotten!

 Granny came to visit yesterday...

 As usual, I can never seem to catch the smiles as they happen... These are as close as I got.

 Holden's favorite nurse, Stephanie. She abandoned us to go on vacation for a week. :) And I'm not sure what he's doing here... The tongue is a constant theme.

Day 37

The CICU is fast losing its appeal... Now that we can see a light at the end of the tunnel, patience is running very thin! All of these little setbacks add days to our stay here, and I am fairly certain we won't be leaving anytime soon. (Although I have to say, as much as we want to be out of here, we're really going to miss a lot of the people we see every day... I love some of his nurses and doctors.) His lipase (numbers they use to measure pancreas function) were in the 900's yesterday, and this morning they had jumped up to 1400... Luckily, he doesn't seem to be in as much pain as he was in last time the numbers jumped. They've stopped his feeds again (he didn't even do well on the Tolerex), and it looks like he'll require a longer fasting period to heal. The surgeons are also talking about unplugging his belly drain again... It's been capped off since Saturday, and they're wondering if that may be making things worse. Personally, I think it's the feeds more than anything, but I left my medical degree at the house. :) In all other areas, he's doing really well. He's not having any problems with the Vapotherm, and his O2 sats have been great. They're weaning him reeeeaaallly slowly on that... I think they're all scared of him now, haha. His meds seem to be under control, and he seems pretty comfortable. So keep those prayers up for pancreas healing, and we can get out of this place!

On another note... Children's offers so much to the kids who have to live here... I have been so impressed by how much they try and do for them, especially over the holidays. The library here is giving away books this week, and I found a couple of cute tiny books for Holden to read in bed... Now he won't have to hold the big books up with his feet! If you have any old books you're looking to get rid of, please consider donating them to the hospital's library. They can use books for all ages.

Another highlight of the day yesterday was a visit from a couple of Dallas Cowboys and a cheerleader. Marion Barber, Teddy Williams and a cheerleader named Megan came through yesterday afternoon, and Holden now has two personalized and autographed pictures, one of the team and one of the cheerleaders. He doesn't seem to care too much, but I thought it was pretty cool. :)

Pictures.... Many, many pictures

I was thinking that there are a lot of people reading this blog who aren't on Facebook, so you may not have seen any pictures of Holden when he doesn't have tubes running out of every inch of his body. So here are some of my favorites... I had trouble narrowing them down. :) (And I'm going to have to do the same thing for my girls too... I ran across hundreds of great pictures of them as well!) But first, a couple of new pictures from today... He was sitting up in bed and making the funniest faces!

Another one of our favorite nurses, Stephanie

 I don't know what this face is, but it makes me laugh!

 I love this face. "Get that freaking camera out of my face mom."

 Planning his attack?

 His first procedure, the heart cath, in September... He was still happy, even with all of that in him!

Day 35

Holden had a much better day yesterday, and seems to be on the right track again... His pancreas numbers were over a thousand two days ago, then dropped to 900's yesterday and 800's today. (They'd like to see them under 100, so we still have a way to go, but he's making progress!) He didn't have to have any rescue doses of morphine until late last night, so he's in considerably less pain. He's been up half the night and this morning, but as long as he's happy, I'm sure not going to complain about any missed sleep! They've started him on feeds again, but modified... Instead of trying full feeds of breastmilk, they're trying very limited amounts of Tolerex. It's basically a formula with no fat in it, since the fat in regular breastmilk and formula can irritate the pancreas. I don't know if it will work, but it's worth a try. Another thing we're trying is a change in medications... It's very rare, but one of his heart medications has a distant link to pancreatitis. We've switched him back to the previous med that does the same job, just in case that was the problem. Hopefully between those two changes, we'll get his pancreas back to normal and continue moving forward. This is pretty much the only thing keeping us in the ICU right now... He's still on Vapotherm, which is a step down from the vent, but we're hoping to get him weaned to the plain old oxygen canula soon. Once that change is made, his pancreatitis settles down and he's back to normal feeds, we'll be able to move out of the ICU to the 8th floor. From there we should be able to work towards getting him out of here, and we can wait for his new heart at home. We still have a long way to go here, but now I'm focusing my prayers on bringing him home for his first Christmas. :)

Dr. Pearse, his primary cardiologist.

His stoned half smile...

He can't sit up very well yet... His muscles are weak from not having used them in over a month. His solution is to hold his book up with his feet to read. :)

 And I've been trying to upload a video of him playing with a balloon, but it's not working. Surely it's not user error. ;-) It's been requested by a few people, so I'll keep trying!

Day 33

Unfortunately, today hasn't been such a great day... Good news first though: He's still off the vent, and really holding strong from a respiratory standpoint. His lungs are still mostly clear, although he's a little crackly in his upper left lobe. He isn't very good at leaving his nose tube alone, so half the time it's not even inserted correctly, and his O2 sats are still near perfect. So, as far as being off the vent is concerned, he's doing really well.

I wish I could just leave it there, but as always, it's one step forward and two steps back in here. The number used to measure pancreas function jumped to over one thousand this morning, and he's been throwing up again... They stopped his feeds around 3am, and that seems to have helped a little bit. All night and this morning, he's seemed to be in more pain than he was before... The doctors have told us that pancreatitis is extremely painful, and they were surprised that he wasn't showing more pain indications before. They've had to give him a couple of morphine boosts to settle him down, and even then he seems really uncomfortable. It's such a huge difference from yesterday, when he was playing and smiling... He seemed pretty content. Now he only wakes up to whimper and cry a little bit, and it's heartbreaking! I'm hoping and praying he gets past this soon... He poor little body has already been through enough.

And just so I can end this on a happier note... Holden is celebrating the holiday season in here. My cousins brought a bag of Christmas goodies in the other day, and he now has a cute little tree... Thank you Jack and Jennifer! :)

One of our favorite nurses, Tiffany. 

 It slays me when he sucks on his bottom lip while he's asleep.

 Watching him play with his toys has never been so exciting! :)

Day 32

Now that he's off the vent, they've weaned a lot of his sedation. He's having a few withdrawl symptoms, but overall he's really awake and alert. Of course, him being awake and alert means that I have considerably less time to spend online and on this blog, but this is what I've been praying for!

He's had a couple of little bumps in the road, but he's mostly doing really well... He's not necessarily breathing "on his own" just yet, as he still has help in the form of a nasal canula, but he's improving more and more. They did an echo this morning to see what's going on in his heart without the positive pressure from the vent... I don't know the results yet, but I'm hoping they're improved from the last one.

Best case scenario would be him getting to wait for the transplant at home, instead of up here in the ICU... If he continues to do well off the vent and transitioning to PO meds off of IV, that could be a possibility! He's officially bumped to a 1B on the list, down from a 1A, now that he's off the vent. That's both a good and bad thing- it will be a longer wait for a heart with him not listed as critical, but this will allow us to not only wait at home, but also wait for a perfect match instead of a "good enough" match.

He's already exceeded my highest expectations, and he's far surpassed the doctors as well... I couldn't be more proud of my tough little man! :)

Day 31

We have lots of exciting things happening this morning! They stopped his feeds last night, and cut off some of his sedatives... All in preparation for extubation this morning. Without all of the sedatives going in, he was a lot more awake and alert. For about two hours early this morning, he kicked his legs, moved around and really focused on us. At one point, he was even smiling at us... I've been waiting to see that smile for exactly one month now, and it was totally worth the wait! They extubated him with no complications around 9:30am, and so far his numbers and O2 sats are looking great. (A few of his nurses who have fallen in love with him had to come in for the "extubation party"... One was even skipping a class so he could be here. It's really touching to see how much all of them have taken him into their hearts.) It is such a relief to see him without a tube down his throat, even though he still has a million other lines and tubes going into his little body. He should be so much more comfortable now, and I am praying hard that it lasts... The last two times we've tried to extubate him, he's lasted for about 9 hours before having to be re-intubated. I'm trying really hard to not get my hopes up too much, but I think it's okay to be cautiously optimistic? This is such a huge step forward for him... We're still in the same place as far as the heart transplant goes, and he is by no means "cured", but being able to breathe with just the nose canula support is a big deal... I'm one step closer to getting my baby back!! We're hoping and praying that the dreaded 9-hour point comes and goes without incident... Until then, we'll all be anxiously watching, waiting and praying!

I couldn't get any really good shots of him smiling, but these are close enough...

Notice something missing?? No breathing tube! He was worn out from all of the activity...