Brendan had a rough night, he had a really hard time being comfortable and was slowly dropping sats. By 4am, the nurse was telling me that intubation was going to be required and that she had gotten the doctor. Fortunately, the doctors held out and Brendan came around and started to improve again by 6:30am. In fact, by the time they did rounds at 9:30am, his lab work was better, his chest xray was better, his monitors were better, and his appearance was better.
Brendan’s current intensivist and his pulmonologist are a husband/wife team and they have spent a long time discussing Brendan and his treatment plan. She suggested a new steroid treatment that they started last night and so his improvement today may be due to that kicking in. They both stopped in frequently all through the day to track him, and it makes me feel good that they have taken such great interest in him.
She also got preliminary results back on the lung biopsy they took Monday. So far, it definitely indicates “preemie lung”, chronic lung disease caused by incomplete development. No surprises there, they are continuing to run studies.

Brendan had an awesome nurse today, and I also really like the one that is starting for tonight, it makes a HUGE difference.

Here is Brendan in his bouncy seat in his big boy bed!

His swelling is greatly reduced and he is starting to look more like himself.

His color is pretty bad, although it fluctuates pretty wildly. He has been REALLY blue at times today, it is really scary. He did have several hours of awake time where he was not crying. When he does cry, it is still a pretty weak little whimper/squeak sound but his voice is starting to come back. A few more days and he will be waking up the whole floor like he used to.

Trevor has had a little issue since last week when he had his immunizations. Some glycerin was all he needed and now he is feeling so much better. Three seriously full diapers in about a half an hour makes him a whole new baby.
He is working on his talking every day now, especially when he is lying on his changing table. He makes a specific sound that is a lot like “hellloo” and “hi” and then he will just say “gooooo”.
And he knows where is feet are now!

I got Trevor some spoons to play with. He seems to know just what to do with him. Once his regularity returns, he will be ready to try a little bit of rice cereal!

Bill is staying overnight with Brendan tonight, and I am home to try to sleep. We heard tonight that one of the two babies on the floor that were there waiting for a heart transplant got her heart today! She is still in surgery now, that whole ward is anxiously awaiting to hear her come back to her room!! I can’t wait to hear tomorrow about how she is doing – the transplant itself is only the beginning of a very challenging and short life.

This doesn’t happen very often, I don’t have pictures to post today. I have spent the majority of the day at the hospital and most of my time here has been holding Brendan’s little hand and trying to help keep him be comfortable. He can power through most of the pain and sedation meds that they are able to give him without affecting his breathing and new circulation so he has been quite a bit more agitated today. The doctors are working to balance those meds again.
He made it through another day and stayed off the vent, but he is so close.. I was worried several times today but he is holding on.
His chest xray has been looking bad and they were talking about having to put in another chest tube for drainage. He had an ultrasound of his chest and it showed that there was only fluid on the bottom and back of his right lung and that it was not significant enough to go after with a tube at this point, they hoped that the diuretics will do their job instead and they will recheck him in the morning.
They stripped the dressing on his chest today and his incision is looking very good, that is a good thing! His early preliminary lung biopsy came back with a lot of negatives on tests for infection. (negative as in no infection not bad news!)
We keep being told that next week things will be looking a whole lot better. Of course right now, it seems like next week will never get here, the days are long and exhausting.

I miss Trevor very much, I got to spend a short time with him today and he is as cute as ever. I miss my brain, I am having trouble typing! Time to try to get some sleep in this awesome chair.

Brendan has been really rocking the boat today, just like they told us he would. We knew that the days following surgery were going to be tense and difficult, but I would say that we were much more stressed today watching them manage his situation than we were yesterday waiting for him.

But our anxiety aside, we focus on the positives. Brendan has (with lots of help!) met every goal they had for him after surgery. They turned off the paralytics this morning and allowed him to wake up. The first thing to move on Brendan was a little hand that reached up to grab the breathing tube. They gave him his beanie lion to keep his arms propped properly and to distract the fingers!
Brendan Recovery 1

The moment that he was recovered enough that he was opening his eyes to make real eye contact with me, they moved to extubate. The breathing tube came out at 2:10PM and he went on a regular high flow cannula. This picture is right before extubation.
Brendan Recovery 2

Unfortunately, he only lasted on the high flow for a few hours. He had several frightening episodes of desaturation and the doctors were kept on their toes all day tweaking medications to stabilize him. They had to switch him to the nasal cpap with a little pressure support.
Brendan Recovery 3

Brendan had a total fit of fury when the respiratory tech tried to put a chin strap on to keep his mouth closed. So to keep the cpap working properly, they gave him his pacifier and used a beanie baby train to keep it in place. And check out that IV manifold!
Brendan Recovery 4

So goals for today were to get extubated and stay off the ventilator. CHECK! Tonight as I type, his condition is rough, he is on maximum support and just maintaining his numbers properly but he succeeded. Go little Brendan!!

In sharp contrast, Trevor had a busy day of ultra fun, including a quick walk outside!