It was a very stressful day today.. leading to another day of nail biting tomorrow. Brendan just could not get comfortable today, no matter what they gave him and he struggled to maintain his numbers. There were lots of people in and out of his room, and in the ICU that is never a good sign. Right now, he is resting, but still sitting with saturations in the low 60’s.
He went for a CT today and the preliminary reading from the doctors indicates that there are two tiny collateral veins, but they are too small to coil during a cath and insignificant when it comes to the blood flow, so that is not causing his trouble.
The CT did show bad lungs and that is what it boils down to. His left upper lung was totally collapsing again today, even on pressure support. They ordered a chest ultrasound to get a better idea of how much fluid was still surrrounding the lung and what might be involved to drain it off. It may be as simple as drawing it out with a needle, but the fluid may be in lots of small isolated pockets which would complicate the issue.
His tracheotomy is at noon and then we have been warned that the first few days after surgery will be very difficult as it heals in place. Once it gets sealed in place, it will be easier to provide appropriate pressure to his lungs to support him properly. I can only hope that this procedure will finally be the turning point to get on the road to recovery.

I didn’t take many pictures of Brendan today, just one to share.

Someone must have replaced Trevor’s rice cereal flakes with Folger’s Crystals. He was ultra awake-baby today and refused to nap. He would fall asleep with Gramma rocking him and as soon as she went to set him down, he would pop awake.

Just when you think that baby is asleep…

… Haha! Only acting!

Birthdays, even the monthly ones should be for celebrating, but today was no party.

It started out fun. Because the boys are five months old now and we were given the go ahead by the pediatrician, Trevor got to have his first sample of food other than breastmilk. We mixed him up some very soupy rice cereal! He did very well for his first time being spoon fed.

Then after his bath, he got a super cute crabby outfit and was feeling very talkative.

I headed to the hospital around 11:00am, and I walked in to chaos. Brendan totally failed his vent support weaning and his left lung had collapsed. He just was not ready to deal with the lack of pressure support with his floppy airway. This pretty much sealed the deal with him going to get his trach on Tuesday.
When they did a chest xray, they also saw fluid around his lungs and that always makes them nervous. He had an echocardiogram to make sure that his heart was working properly and that there was no fluid around his heart – which there was not, it all looked good.
What was found was that the atrial catheter/IV line that was placed during surgery had slipped back and was leaking fluid where it did not belong. The doctor told me that they may need to put in a chest tube to drain it off.
Because of the lung collapse and the fluid, the doctor strongly advised that they intubate Brendan today. She would rather do it now in a controlled environment while she was there to monitor him all day than to wait for him to have more of a crisis and need it in the middle of the night when he is in trouble. He would have been intubated tomorrow anyway for anesthesia for a CT scan that they are going to do. And then he would need it Tuesday for the tracheotomy, and after that it will be moot.
Intubation will help support his lung and allow them to help “reinflate”. Most importantly, it will be a secure airway that allows removal of the horrible cpap mask that was destroying his little face and nose. The chest xray afterwards already showed some improvement and they feel that a chest tube won’t be necessary.
So once Brendan heals from his trach and gets stable (3+ weeks), he should be able to come home to grow. We will have a long hard road ahead getting him stronger and healthier.

At least after intubation, Brendan’s color was better. With all the bruising from taking out the lines, the swelling in his face from the cpap straps and the damage it did to his skin, he looked like he had been in a brawl.

Add to the thrill today the fact that I almost lost all of the cute pictures from my camera card. A major reader error made me have to use a file recovery program to scan the camera card. I am glad it got my super cute video back!

Grandpa Jack is still in the hospital, we hope he will start to make some progress too.

Brendan had an OK day today. They started slowly on the new drug and it hasn’t really had an effect. His blood gas levels were the same this morning. He did come down a bit on pressure settings on the vent and seemed to be sticking in about the same place sats-wise.
His tracheotomy is scheduled for Tuesday at noon. It would pretty much take a miracle to avoid that procedure at this point.
He was fairly cranky when he was awake, although I managed to get about 45seconds of happy baby and got one good smile for the camera.

He liked his bouncy chair for a while, but went back to most of the day on his belly. Sleeping prone helps open up his airways.

It is sad how the mask is smashing his forehead and making him look mad while he is trying to have happy face.

Trevor had a morning bath of course

Put a baby in a crabby outfit, get a crabby baby!

Super cute baby!

Even crabby babies eventually take naps.