Tuesday, March 17, 2009

Happy St. Patricks Day!

Happy St. Patricks Day!

Jaxon had a GI follow up at Childrens Hospital this morning. The good thing is that this is the first monthly follow up where things haven't got worse. They've pretty much remained the same over the past 4 weeks since we last saw the docs. So this is what came out of this appointment:

1. Jaxon weighed in at 14 lbs, 11 oz. A nice weight gain. This means his body is working properly and they are very happy with this.

2. We are adding a lot more Pedialyte to his formula to make up for all the lost fluids we vent out of this stomach. But yet, we're going to start keeping his g-port closed for a few hours at a time to allow his stomach to start feeling contents in it, and to start stretching it back out slowly. Obviously if he starts getting yucky, I'll open this port...but we will slowly try to close it more and more.

3. His Zofran medication has been increased to almost double due to weight gain. I'm going to try and use it only 3x's a day. The less you use of this, the longer it will work I guess. We assumed it has stopped working for him, but the doc said he just may not be getting a high enough dosage. Remember this is the drug that is used solely for nausea and vomiting. We're trying to make him more comfortable while he grows out of this.

4. I've received a packet of paperwork to fill out to submit Jaxon into the Feeding Program. He would begin as an outpatient and work with various therapists to get his mouth/throat/stomach working again. There is a four month wait to get into this!! The nurse told me that Jax may be able to get in sooner since he doesn't require all the therapist (ie - Psychiatrist). 
It's clear that Jax has developed a VERY SEVERE case of desensitised mouth/throat/stomach since he hasn't used these things in months. If you put a drop of water in his mouth, he'll violently vomit. This isn't reflux. It's a side affect from the reflux, since he could no longer eat orally. His oral aversion needs to start being addressed, so when his reflux does calm down, he is able to feed orally again some day.
The doc told me that once he's accepted into this program, his complete care is in this program. He wasn't ready to talk about this program until he knew that Jax was working anatomically correct with feeding tubes and weight gain. I think this program will be the trick to someday be tube-free. But first we need to get a little further along to being reflux-free.

5. I can try to put a little Maalox into his g-port during his "witching hour". Around 3am Jax falls apart and heaves every 20-30 minutes. The doc said to try putting a bit of this into his stomach to see if he can get a bit of relief during this time. We'll see how that goes.

6. And finally....I had another "come to Jesus" talk with the doc. He said that the magic number in the GI world when it comes to infant reflux is 22lbs or the age of 1. He said that Jax is considered 6 months old anatomically right now. Reflux peaks at 4-6 months. Since he has such a severe case, the doc believes he has peaked this past month and we can start to see progression forward now over the next few months. We are told to not be confused with his oral aversion to vomiting when anything is in his mouth. That's not the reflux, but again...a side affect to being tube-fed, which was very necessary for him to gain weight and thrive.

So we're hoping that while Jaxon's reflux gets better over the next few months, he can start this feeding program. The doctor told me to expect Jax to be considerably better with the reflux by his birthday, and he has high hopes that he'll be eating orally by the end of summer without a tube. We can only hope...

In other news, we think the boys are teething like crazy. We have a suspicion that Brady is cutting his top right FANG (aka his incisor). Wouldn't that be cute? Can you hear the sarcasm? Time will tell very soon if that will be his first tooth. My kids don't like to do anything "ordinary", so it would totally be them to not cut their bottom front teeth like most babies do! :)

The boys ready to go for an evening walk!
Morning medication ritual. 
(The diaper wraps around the GJ-tube)
Jax being cute in his highchair.


Roshelle said...

I don't know if you remember me from the nest/bump (roshybride), but I have been following your blog for quite a while. Funny thing is that I was at the GI specialists at Children's today too. We see Dr. Althoff. I'm from Kenosha. Ezra has reflux also (but definately not as severe as Jax's).

Heather said...

It must be a bit of a relief to hear that the doctor thinks this has already peaked for Jax. I bet you are dreaming about 22 pounds now! Hopefully he can get into the program soon.

O- and the pictures are just adorable. They always look so mischevious when they are laying next to one another!

Amanda said...

So the worst is over!!!!! My God, they are SUCH cute boys. Love the little grins. I hope you are able to get into the program quickly and you are able to leave the port clamped for longer and loger periods of time> You are doing SUCH a great job with your boys XOXO

Laura said...

Hi Annie,
I just tried to type a long message to your post with a bunch of questions but it gave me an error message. I probably screwed up something. Anyway, I have some questions and I will try to send you an email later today.
(aka LSTaylor73 and Taylo2Babies)

Valerie said...

They are such cuties! Ce goes for another appointment in a couple of weeks. They want us to d/c her meds but everytime we do she has more reflux attacks. Well, we'll see what happens.

Tony said...

Hi there! I just started reading your blog and just wanted to say what an incredible job you are doing! I have three little ones so I can't imagine how you are functioning on such a lack of sleep :)I pray that your little one continues to find relief and outgrows this awful problem! And I pray for you and your husband on your continuing journey!