Just a quick one, but thanks for all the prayers. Jayden went in to his ped today and he gained weight! He finally made it pass the 20 pound mark - barely, but he is. The bigger thing is that it looks like these added drinks, calories and protein are working so if that keeps up, we may avoid the G-tube! Anyway, just wanted to give everyone an update.
Read more...The boys had a blast with their baskets and getting ready for Easter:)
Ahhh - another Jayden update. We visited GI and pulmonolgy in the past week. The overall verdict of those docs, as well as his general pediatrician is that he is still struggling with weight. Since we removed the NG tube less than 10 days ago(because of the strangulation hazard) he has dropped 1/2 pound. Obviously this is not great and his weight had been leveling off as well. The GI docs gave us fruit juice with 250 calories per 237 mL and 9 grams of protein as well as peptamen with 375 calories instead of 250 per 250 mL. The biggest challenge is to get him to take that and continue to eat throughout the day normally.
If he drops any more weight or doesn't gain, he will probably get a G tube inserted. It is relatively routine, but the docs would have to make an incision in his belly and then into his stomach for placement. It is semi-permanent, meaning they could/would remove it when they establish he is doing well gaining weight and not having major issues. Obviously there are always risks associated with this and if we can avoid cutting into his stomach, we would gladly do it. We are praying things turn around before this, but if he needs it, we are preparing for him to go down that road. If he gets one, he will have a relatively short hospital stay as long as he does well.
He is doing well now and we hope he stays well enough this summer to gain weight and strength. Keep up those prayers - you know we depend on them:)
We are well into Spring and things are rolling around nicely here!
Jayden got sick this week but got some meds and is responding pretty well to them, which is such a blessings and definitely a sign we are heading into our favorite part of the year - the non-sick part:).
We started our next rounds of appointments with docs this week. We met with pulmonology and they got the final genetic testing back confirming he has no traces of cystic fibrosis. He is still not growing well though, even with the added nutrition and calories, so we are heading to see an endochronologist because Dr. K said he can't just chalk it up to respiratory problems and definitely not to caloric intake.
We actually removed his feeding tube after waking up a few times to his tube wrapped around his neck - SCARY. He was always ok and it was never tight, but we don't want to even chance the possibility something may happen with it so he went back to drinking his formula from a cup.
We did get nurses to help us out, but it wasn't exactly what we were hoping for and have been a little overwhelmed with the additional people in our house/lives all the time. We just needed a little help (at least at this time) with the IPV and instead we have someone around nearly all our day, which is challenging. We are hoping to reduce the visits to daily 1 or 2 hours a day instead of the 6 hours they currently are.
Besides that we are all good. Ethan and Jayden play a lot of going to the doctor and Ethan has been a little upset Jayden hasn't been in the hospital because he can't play with the toys in the 5 South playroom - oh darn.
Hope all of you are very blessed during this Easter season. I will update soon with some fun pictures and videos!
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