Monday, September 22, 2008

Questions? Only some answers.

Is Brayden’s new G-J tube working?
Brayden is getting his feedings through the J-tube portal. The food is going directly into his small intestine; which means he is not vomiting his food anymore. We have been able to get the correct amount of calories in him. Before his new tube we were only able to get in about 400-500 calories a day. The past couple of weeks he has been getting around 900-1000 calories day.

Is Brayden still vomiting?
Yes. The vomiting is no longer his food (because it is not in his stomach). It is horrible retching of stomach bile, which looks incredibly painful and burns his skins on contact. Once he starts, it takes him some time to calm down. We do not know why this is still happening.

Could it be because of seizures?
Possibly, but one of his seizure medications has been increased. The seizures have been doing better but not the vomiting.

Could it be severe reflux?
Possibly, he is taking Prevacid and Zantac. We have no idea if these medications are doing much good.

Anyone have any good insight or thoughts about any of this? Are there other reflux medications? Could a nissin help (Brayden does not have one)? Are there any questions we should be asking?
Brayden is scheduled to see the GI doctor at Children’s on Thursday, we want to be informed as possible and find a resolution to the vomiting. If the vomiting does not decrease, the plans for Brayden to eat orally or to have things put in his stomach becomes a harder goal to reach.

How is Brayden doing?
Other than the vomiting, Brayden is doing great. Last week his occupational therapist, Ms. Pam, came for his weekly appointment. He was thrilled to see her. Brayden has been working with her since he was about 3 months old. He grinned and pulled out all of his tricks that afternoon. She brought toys that make noise and things for him to bang on. He gave it his best effort. In his somewhat random/coordinated movements, he was able to bang on a little piano. If he hit a key, he squealed with excitement. The moment Ms. Pam walked out the door, Brayden slept for the rest of the afternoon. He was wiped out.
Feel free to ask us questions, we do not mind answering.


Anonymous said...

Carrie - Last week I stumbled upon your site quite by accident. I just wanted to tell you how moved I have been by your sweet, sweet boy and the love and caring that you and your husband shower on him. I have shed some quiet tears for the difficult life he has had, but equally for the joy that he must bring to you. I write this note to encourage you in your journey. Even though I am childless, I thank you on behalf of all the mothers of special needs children. You are indeed an inspiration to them and your boy is a hero in my eyes. And his big brothers? Too impressive for words.

God is smiling on you and your precious family.

Debbie said...

How do I follow up with the commenter above? Wow. That's all I can say is wow. And do keep focusing on the progress he is is just so hard to believe that he is going through all this because he just looks so great whenever I see him. God is good.