Trevor got up at 3am and 6am to eat, but otherwise we all slept in and got some sleep. When I left the hospital yesterday, I had to keep telling myself that it did me no good to sit there 24 x 7 and obsess about every little thing, I had to have faith that Brendan would be safe and that I could do nothing more to help, especially if I was exhausted.

There was some big news yesterday. On rounds, the doctors all decided that they were not happy with how well Brendan’s blood was oxygenating and that he was bluer than they wanted, even though all of his blood work indicated that his body was compensating well for his blueness. If you or I had his oxygen saturation levels, we would be passed out. But his body is used to it and knows how to manage.

They decided to do a “bubble study” which is where they use an echocardiogram and they inject agitated saline filled with microbubbles in to his PICC line. It was pretty amazing to watch, actually. What they were looking for as they watched the heart is no sign of the microbubbles. They should have gone straight to his lungs via the new Glenn circuit. But sure enough, all these little bubbles poured in to the heart instead. As they studied the previous cath results, CT and echocardiograms, they were able to tell that this pathway for blood was not there prior to surgery.
Once they operated and changed the pressures and blood circuit, some veins they call “collaterals” opened up and they are providing the blood a shortcut around his Glenn and still letting the blue blood in to his heart. They also act like a pressure relief valve and are keeping the blood from having enough pressure to get through his lungs properly.
I was mixed with emotions as they talked about it. The last thing Brendan needs is more complications and something new to fix! But I was absolutely amazed at the body’s ability to try to fix itself after it was surgically altered.

So the problem now is that closing these collaterals involves going back to the cath lab. They can insert little coils to close off the veins. Going to cath lab means anesthesia which means intubation and Brendan’s intensivist is VERY against intubating at this point because he might have problems getting back off of the breathing tube.
The other thing to do is trying to manage him as is, and give him time. As he gets used to his new circuit and his lungs get stronger, these small pathways will not really be an issue. His lungs will learn to deal with the new blood flow. The question will be whether he can manage while we wait.
Does this all sound familiar!??! I thought we were done with this rock and hard place nonsense on Monday when they finally took him to surgery.

Brendan needs his little bandana to keep his pacifier in so that there is no pressure leak from his cpap.

The good good news for Brendan yesterday is that he was able to spend about 6 hours off of the cpap and give his poor nose and head a break! He was super blue like this without as much pressure support, but he hung out on the very edge of acceptable numbers so they let him rest. We were very happy for him. Each day maybe he can go longer on the regular cannula.

So his primary cardiologist is working this weekend trying to find the data he needs to decide about closing those shortcut veins. His intensivist will throw himself in the way of the door to the cath lab if they can’t guarantee that it will take a lot less time to recover from this procedure than it will to just wait for his body to adjust on its own.

In the meantime, Brendan hangs out “bluer than a squid” as his NP so lovingly says. She also called him a blueberry-head while she promised me that she sees so many babies this way and that today they are so happy and normal and active.

Trevor’s luxury bath time is the highlight of his day. He has the softest skin I have ever felt, even on a baby!

Trevor thinks he is awfully big now and he can hold his bottle himself.

In fact, he is growing too fast. Gramma is trying to stretch out his jammies because his little toes are already crammed in to the feet of a 6month size!

DOH!

I am far too exhausted to deal with pictures and updates before I get some sleep. I didn’t want to leave the blog empty, I will put up all the cuteness in the morning before I head to the hospital. Brendan had some accomplishments today but it was a very strenuous and difficult time for me! We all need some rest.

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.