Things have been going really well overall. Judah is learning to play and move and is even learning how to make sounds around his trach! We love getting to see him figure things out and interact with us more and more each day. His little voice is the greatest! As I mentioned yesterday on Facebook, Judah has been having a lot of trouble keeping his food down. (Just a reminder, he is still getting a soy based formula through his g-tube.) Since he was born, it has always taken a while for his body to adjust to changes in the feeds. About 3 weeks ago we increased the amount we were giving him (per doctor’s orders). Since then, he’s been throwing up during or after almost every daytime feed. Typically what happens is, he will cough on mucus, then gag, and throw up. Although this isn’t really that new, it seems now that it has become a learned behavior. Meaning, we believe he is doing it purposely because he knows it makes him feel better. Obviously, this isn’t good for him or us. Despite this, he has still been gaining weight and is now up to 15.6 lbs! He is finally gaining weight at the rate he should be!
Yesterday we took Judah to two (scheduled) doctor appointments. First was his G.I. (gastrointestinal) appointment. They were very pleased with his weight gain and how he looked. We talked about his issues with keeping food down and we decieded to try to give him continuous feeds overnight and make his daytime feeds smaller. The reasoning for this is that he rarely throws up overnight (because he’s sleeping). So we agreed to try and give him more at night and less during the day, so that when he is throwing up, it won’t be as much. This way, he will be still getting the same total amount each day. We’ve only done it for one day so we’ll wait a least a few days before we decide if it’s working.
Next was his appointment with his cardiologist. This also went really well. Judah especially loved when the nurse and I did a joint beatbox session for him. (He LOVES the beatbox!) Based on Judah’s oxygen saturation levels (78-82), his doctor believes the next several months will look like this: July – regular appointment; August – overnight visit where they will run tests to see if he’s ready for the next surgery; September – surgery (the Glenn). We actually thought his would happen a lot sooner but that’s most likely not the case.
We found out that during the overnight stay for testing, they will also look at his bronchial tubes with a scope to see how his airways are doing. If they look significantly better, they may look to start to get him off the trach and vent after he recovers from the Glenn. We would really like to see it be 100% better by that point and remove the trach before the surgery.
1. That Judah would keep his food down. That whatever is causing him to throw up would no longer be an issue.
2. That he would continue to grow.
3. That his bronchial tubes would grow strong and large so he would have no need for the trach and vent.
4. Complete healing in his heart.
We believe our God does miracles. We believe he is a loving God who loves to heal his children. I know some may find that hard to believe but we have resolved to stand on the truth of the Word of God. We believe He is able. We ask that you would believe for our Judah along side of us.
We want to thank you all so much for all the support you’ve given us over these past seven months. We are continually amazed by all of you! We thank God for watching over and keeping Judah and we thank God for all of you.
Nick & Liz