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.

We had our planning meeting today with the doctors. Brendan’s new plan is to challenge him on breathing over the weekend, trying to wean the cpap support. If he can not make dramatic improvement enough to convince the doctors that he can get off the cpap, then he will get his tracheostomy next week.
The pulmonologist believes that he needs to get a lot bigger for his lungs to have a chance to grow new tissue and get stronger. Her point of view is that the trach is a good thing for him and will provide a stable and secure airway and a reliable means of providing some pressure support without harming his face and requiring so much sedative.
The cardiologist does not feel like it will do him any good to go back to the cath lab, but if they are going to do anything that requires anesthesia like the trach, then they would like another CT to be done.
The surgeon did not really have any input, other than that he wants to see one surgery done at a time. He does not feel that doing a g-tube at the same time as the trach is a good idea. A g-tube would be a port in his belly for feeding that would allow the ND tube to come out of his nose.

They are going to start a new drug tonight to give Brendan a bit of work to do. His little body is countering his low oxygen/high co2 levels in his blood by keeping bicarbonate levels high in order to buffer the blood and protect it from becoming acidic. The new drug will reduce the bicarb levels slightly and ideally Brendan would breathe to rebalance the blood. How he reacts to this is going to be a big part of knowing if he is going to be able to get off the breathing support.

I only took one picture today of Brendan, it is a lot like the last few days. He didn’t really change much, he didn’t have awake time while we were there. He does have another new animal toy in his bed, hopefully he will be able to enjoy it soon.

Trevor had too many pictures to choose from, he is even cute making camera face.