We're Heading To CHOP

So we went in for Jayden's 1 year checkup today and things were a bit shaken up for us. He has only gained 2 pounds since his 6-month checkup, even with the extreme addition of fat and calories to his diet so they are admitting him into the hospital for a week or so and putting him on a feeding tube. They will also teach Jim and I how to give him feedings as he will probably be on the feeding tube for a month or two at night while he sleeps.

The biggest underlying concerns with his weight and health is that if he would catch something, it could be a struggle for him to overcome it. They want us to go in tomorrow, but have given us a few days to work out the details.

They (his pediatrician and pulmonologist) are discussing possibilities for what we need to look into and what treatments and specialists are next on the list. While we are there, he will be under the care of pulmonology. He is getting set up to see a nutrionist, GI specialist and the geneticist as well. They are also talking about sending us to John Hopkins in Baltimore to get some testing done that can only be done there currently.

He is being treated as a cystic fibrosis patient right now because although we did a genetic test, they are still not comfortable ruling out cystic fibrosis. The test we did only tests for 70 known mutations and there are more than 1000 known mutations linked to cystic fibrosis. If he does have it and they delay treatments, it could cause permanent damage for him, so they feel they should be more aggresive. We feel we would rather be safe than sorry.

They are looking at us using some more aggresive therapies with Jayden to help break up congestion in his chest and hopefully prevent infections from brewing.

Also as first signs of any cough, he will have to start some aggressive antibiotics to hopefully ward off any long-term infections.

We will also continue to look into Shwachman Diamond's Syndrome.

The good news is he began Synagis today and hopefully that gives him an extra layer of protection as we get deeper into the winter season.