Update On Jayden 12-07

I'm sorry I can't be more creative with the titles, but whatever:).

So Jayden finally turned the corner with what he had been battling the last 4 weeks or so. It took a new dose of a new antibiotic, but it seems to be doing the trick and he is now almost back to where he was at the beginning of November before he started getting this (at least breathing wise).

We were at the doctors every day last week, but on Friday we had to take him in to the pulmonologist. His pulmonologist, Dr. K, told us he is getting more concerned because despite our tube feeding, Jayden has not gained anything. He actually lost a tiny bit of weight (he was 7.93 kg a few weeks back and is now 7.86 kg). He said that despite this, he is glad we added the tube because at this point he could very easily be losing weight if he wasn't getting this added to his diet.

It may not be very apparent right away the issues his breathing has on his weight, but one concern is the more he has to work to breathe, the more calories he has to burn to breathe and the less is being packed into his body. So theoretically, if we can help his breathing and keep him relatively stable, we can more easily help him gain weight.

The good news is that his test show he is absorbing the fat and nutrients in his diet, so it is likely not a malabsorption issue.

We will see a GI specialist this week and after that it looks like we will have him admitted into the hospital for another round of procedures, but if all goes well, it will only be an overnight stay.

They want to do the chest CT scan, a milk scan, a lung biopsy and an endoscopy (assuming GI wants one, which Dr. K thinks they probably will). All of these except maybe the milk scan require anesthesia for him, so we are hoping to line it all up together and only put him under once instead of multiple times. There are always risks, and especially the lung biopsy carries a bit of a greater one, but they really need to get to the bottom of what is going on to really help him.

Dr. K said we are really getting into the realm of very unusual things (which we kind of figured at this point;) and they are trying to explore the more likely and less invasive possibilities first.

Jayden is still as happy as ever as long as we aren't doing medicines and sticking tubes down his nose:). Somebody forgot to tell him he's sick because he sure doesn't act like a sick baby most of the time. The docs and nurses always look over his chart before meeting him and expect him to look much sicker than he appears, which we take is a good sign.

We have such a wonderful, caring community and although this is so overwhelming at times, it is also our normal and we get adjusted each time things change. God always blesses us with what we need as we need it and we are so grateful for that.

We are praying now God will lead the doctors down the path they need to explore to find something to work for Jayden. In the meantime, we pray Jayden does not contract the flu or anything else and we can keep him healthy enough to do these procedures.

They want this all done by Christmas, but we will have to see how it works out. Likely it will all take place quite soon so we'll keep you posted.