Charlie Takes a Step Back

It's Saturday evening. Firstly, I would like to tidy up a loose end about Charlie's nutrition. As I mentioned, the team have been trying to work out a way to give Charlie more calories while he stays on Omegaven. It looks like the way round the issue I described is going to be 1 day of Omegaven followed by 1 day of Intralipids. This will probably work so I am keeping my frustration about the issue in check... but I will vent a little here. We really like the nutrition team so to see them have to waste their time and energy dealing with politics and admin is upsetting. Watch this space, though, because Dr. Gut Guru has his eye on another plan for if we still need some help a few weeks down the road.

I gave you the headlines of Friday with a promise of more detail. I went to the hospital in the morning and then worked rather than my usual work then go to the hospital. I did this because we had been told that Charlie was going onto CPAP at 9am and I wanted to watch. It went well.

However, we were told that Charlie was likely to be a bit more of a struggle than we had seen with Henry.

With Charlie doing fine on the CPAP, in the afternoon, Aly asked the team to take another look at Henry. He really wasn't liking the CPAP. His nurse tried out a Hannibal Lecter style straitjacket to keep his hands from pulling it out.

There was a broad agreement among the nurses that he would be fine if they moved him to the less uncomfortable nasal cannula. The team agreed. On Friday night, neither boy was on a ventilator for the first time ever.

We called early on Saturday morning and we were really pleased with who our nurses were. We wandered in around 10 and made a plan for some holding. I am a coward when it comes to the holding thing. I love to hold the boys but I am acutely aware of the risks. I quickly "baggsied" ("called" for our American readers) Henry, the low risk option.

While Henry and I were enjoying our chat (there's a video here), Aly and Charlie were not having such a great time. Charlie was struggling to keep his "sats" up, meaning there wasn't enough oxygen making its way to his bloodstream. The nurse tried turning up the oxygen but it wasn't working. Charlie was put back in bed, a Breathing Angel was called and everything was checked and re-checked. There was no panic because Charlie wasn't dangerously low on oxygen. It was just obvious that something wasn't right. The Neonatal Nurse Practitioner (NNP) was also called and an X-ray was called for "stat" (they really do say that in the hospital, not just on ER).

The X-ray showed that Charlie's lungs were not getting the air they need and that means a collapse. It sounds bad but we were ok about it because we had been well warned. You see, the ventilator provides pressure in the lungs and it does a really good job of it. The CPAP tries to do the same but there are risks that there might be setbacks given how long they had been intubated. The decision was made to re-intubate to get Charlie's lungs inflated again.

I have been at the hospital while things have not been going well before. My "M.O." is to pace, get on the team's nerves, cross my arms, frown and constantly, constantly stare at the numbers that show the vital signs. In Daley Thompson's Decathlon (sorry for another UK reference), you used to tap the keys really fast to get the "power" up before you launched the javelin (at the perfect angle). I would watch the vitals on the boys and try and make the numbers go up by metaphorically battering the buttons on a metaphoric ZX-Spectrum. Today, I was sitting with Henry in my arms and I couldn't see the monitor. I considered demanding that the nurse take Henry from me so that I could do some pacing but I threw the idea out quickly. So, I sat there and watched. Aly was amazing, the nurses were amazing, the team was working as a team and Charlie was soon back to above 90% oxygen.

I continued to sit with Henry and we had a visit from one of my favourite people in the hospital, Dr. Needahug. The first time we ever met Dr. Needahug was at The Pavilion when a man that we didn't know very accurately said to Aly that she looked like she needed a hug. Aly nodded and, to my surprise, hugs were exchanged. That man was... oh, wait, you have worked that out already, haven't you?

Dr. Needahug really knows lungs. He also is one of the many wonderful people at the hospital that knows our boys. He had wandered over for one of his chats but quickly established that we, forgive me, needed a hug. This hug was a reassurance hug rather than a literal hug. We were assured that this was a small setback and some thoughts were shared on the best way forward.

The next unexpected visitor was Dr. Good Question. I gave Dr Good Question his name in these blogs because I love the way he handled my obsessive inquisitiveness. If I could name him again, I would focus less on how he dealt with me and more on how he dealt with the boys. He has done a fantastic job. As a quick reminder, here's Henry when he took him on;

If you need reminding about how much better Henry is now, you can click the link again!

Even though our boys were not his responsibility from yesterday, Dr. Good Question checked on them before we came in and then had a little check again this afternoon. He was not happy that the vent was back on!

Charlie is already back to 21% oxygen on the ventilator. Today was a setback for him but it wasn't a disaster.

(D)