Day Two Post-Op

Day Two Summary:

• Doctors are working on getting as much fluid out of his lung as they can through diuresis.

• His lung culture came back positive, so they put him on antibiotics to get rid of the infection.

• They've started his feeds and he's been tolerating those great. He should meet his goal rate by the morning!

• His GJ tube site is healing very well

• They will most likely keep him intubated for the next couple of days. They're in no rush to put him through what happened last time when they tried to extubate him (his heart rate shot up to the 200s and respiratory rate was at 100 breaths/minute)

I had a really helpful conversation with the pulmonologist who did Kaleb's bronchoscopy to try to get a better grasp of Kaleb's situation—he even showed me the video of his bronchoscopy! One of the doctors mentioned that there seems to be a connection between Dandy-Walker syndrome and malacia of the airways, which may explain why he has this condition. The massive size of his heart certainly doesn't help the situation either as it's pressing against his left lung.

He said the tracheomalacia doesn't need any intervention because it's not at the point of complete collapse (which would be a big problem as that would cut off all his air) and the fact that it hasn't fully collapsed yet makes it probable that it won't happen in the future.

The bronchomalacia is a problem, making him more prone to infection, etc. but in the event of complete collapse, he can still breathe with his right lung (which is why he has done ok up to this point, even with an incredibly inefficient left lung).

As far as treatment goes, the first step of treatment would be to try him out on the CPAP breathing machine long-term in order to lessen the risk of infection and give his lungs some space to allow mucus to come out. The problem is some babies don't tolerate CPAP well, and there's a good chance Kaleb won't like it very much. However, if he proves to not tolerate it, they're not going to force it on him. The minimum at home treatment would probably be just nebs multiple times a day and being vigilant to guard him from respiratory viruses.

The doctor is hopeful that as kaleb gets older, bigger, and more active, his body will strengthen and mature and the collapse will lessen leading him to not need oxygen, but only time will tell that.

Honestly, the thought of CPAP has been very discouraging to me. The darkest time of Kaleb's initial 3 month stay in the hospital was when they had him on CPAP and BiPAP, so I'm fighting to trust the Lord with that. Whatever way we look at the future as far as his lungs go, it involves oxygen and more vigilance. But my conversation with the pulmonologist today was encouraging.

One fun thing today was seeing Kaleb trying out his new tongue since his tie was clipped. He kept sticking it out and licking his ventilator tube.

Please pray:

• That kaleb is able to transition off intubation smoothly

• That he would be peaceful while under sedation (he "wakes up" a lot and can get restless or agitated)

• That we would entrust all these new details to the Lord and look to Him to guide our future and Kaleb's with perfect wisdom and kindness.

Thank you for praying!