Out, damned tube! Out, I say!

I told Henry that I would write another post when he went to CPAP.  Henry took my challenge and was extubated to CPAP successfully today! This is such a huge milestone for Henry. For the past 72 days Henry has had a tube stuck down his throat helping him to breathe and today he was freed from his nemesis. It was obvious to just about everyone that Henry despised that tube and if left to his own devices he would have pulled it out and thrown it away himself. The exutbation and CPAP placement took a couple days of planning to make sure everything and everyone was in place to launch Henry into this new phase. Dr. Good Question was methodical in the days leading up to today.  He monitored vent settings, tube taping and O2 requirements like a hawk to make sure Henry was totally ready to go. I talked with all our primary nurses and these women all got together and coordinated schedules to make sure that Henry had one of his primaries for 48 hours after he went on CPAP.  A huge thanks to them for caring so much about our boy and making sure he was covered by someone that knows him. Dr. Good Question was adamant about this, which just shows again how crucial good nurses are.  The whole process took less that 10 minutes and Henry did amazingly well. The RT's were wonderful as always. We had several of them helping out and I'm so grateful for their calm presence and attention to detail.

I was able to video the process for David who was at work and for Henry to watch when he gets a bit older.  The CPAP machine doesn't look very fancy or high tech like the other ventilator he was on.  In fact, the little cap he wears to keep it on is attached to the tubes by safety pins and rubber bands. The whole thing kind of looks like MacGyver put it together with leftover parts he found in a basement. Whatever, it works and that's what counts. Henry is currently on 24% oxygen. For those who are saying, "24% oxygen? Well he was on room air on the ventilator, this can't be good" fear not, the O2 is expected to be higher on CPAP, at first.  He actually started the day on 36% and has done so well we have been able to wean him down slowly. They will keep doing this until he gets back to 21%, also known as room air, for those playing at home. Dr. Marvelous stopped by to check on Henry and the look of pride on his face warmed my heart.

That's the Henry report, now for young Charles.

So, as mentioned, Charlie's had a bit of a hard time growing due to a lot of factors: intestinal perforation, multiple surgeries, having to go off lipids, limited space in his TPN etc.  We are incredibly lucky to have the nutritional team that we do. Dr. Gut Guru is out of the country right now but he's been watching Charlie's lack of growth and he spoke with the fantastic nutritionist on our team and we have a plan. Part of the plan involved analyzing my breast milk to see if it was high enough in calories and fat. If the test came back showing it was lacking in either calories or fat content, they would be able to supplement it with fat from spun off breast milk. As I am in the middle of writing this post I got a call from our NNP with the results. The good news is that my milk has great calorie and fat content so no supplementation of my milk will be necessary. However, we still need to fatten up the lad and Dr. Gut Guru has a plan for that. We will be discussing the plan in the next few days and will let you all know what we decide. We are confident that Dr. Gut Guru and his team will grow our baby, there just isn't a better team around to get a baby to grow. Charlie is really enjoying his open crib and was happy as a clam today all swaddled up.

I'm throwing the blog baton back to David so expect the next update to come from him.

(A)