Uh, not much help from the G.I. doctor

The G.I. doctor was of no help whatsoever. He is not my favorite person right now.

I called his office around 9:30am and gave a detailed message. His office called me at 2:00ish to say that doc was not in office today (he was at the hospital) ... and I explained again about Matthew's gagging & retching (no fever.) Then around 3:45pm an office person called to tell me to call Matthew's pediatrician (huh?), a doctor that knows nothing of any of this. Dr. Baron is the doctor that has been following the retching and called for all of the G.I. testing ... not his pediatrician. Matthew has so many doctors ~ it's so frustrating. I obviously called the G.I. doctor because this is the kind of thing a G.I. doctor takes care of ~ Dr. Baron has known of Matthew's retching for at least 6 weeks and has taken over his care (he has a huge file on Matthew.)

Then, the office person said I should call the doctor that prescribed an antibiotic Matthew is taking (which was his pulmonologist ... who will NOT be able to help me with his retching problem.) I called Dr. Baron's office back explaining that I didn't know if it was the antibiotic causing this retching ... or if it was the change in nutrition formula. Heck, maybe he just had the flu, I don't know.

Well ... long frustrating story shorter ...

I didn't call our pediatrician that can't help us with this ~ he would most likely just refer us back to Dr. Baron! ... I did try calling the pulmonologist, but hung up after waiting on hold. I love our pulmonologist, it's not his fault. I didn't want to pester him with this problem anyway.

Mike and I had a pow wow....

we decided that we will continue his antibiotics for the last couple days ... and discontinue the new formula and go back to the older formula. We will figure it out ourselves I guess. We're not going to doctor hop all over this town.

It appears the G.I. specialists don't want to be bothered with this retching problem.
This reminds me of the previous G.I. doctor we had that didn't listen to us.

Not so good weekend for Matthew :-(

This was a tough weekend for Matthew ... (and me) I hate to say.


Starting on Friday while driving to Beaver, he started gagging and retching all over again.

It was like this all weekend long ~ he simply acts like he feels miserable. We checked his SAT's and he did not/does not have a fever. Funny thing, we were just at the G.I. doc on Thursday!! ... so, go figure. He's retching just like he had in the past.... it's like he's not taking this new drug at all. Very very frustrating and disappointing. He's quite whiney and cries a lot.

I am waiting for 9 o'clock to get here so I can put a call in to Dr. Baron.
Matthew has not poo'd for a couple days We have read thru a couple of the papers that they give you w/ your prescription... all of the drugs he is taking can cause all kinds of unpleasant side effects. We're not sure if it's the new antibiotic he's on.....I sure wish he could talk.

I'm sure Mike will update the blog w/ some cute pics we took. He and Daniel planted 60 trees on the property.

GI Doctor Update

We took Matthew to his G.I. doctor today. He's not gaining as much weight as he should, so we will be feeding him four cans of Nutren with fiber per day. We are going to decrease his night feeds a bit and try to increase the volume per feed (to stretch that tummy). We currently feed him no more than 4 oz a feed. That will be increased 5 oz a feed. If that goes well and he doesn't retch, in a couple months we can increase the volume again. Dr. Baron suggested that we put Matthew in his high chair before each feed and let him play with food. He thinks that since his retching has subsided, he may have a better feeling about eating. For the past 17 months, eating has been quite miserable due to the retching. It will still take time since he has a strong aversion to anything with a taste.

Dr. Baron is also referring us to a wonderful speech/feeding specialist to give Matthew one-on-one interaction. We will most likely start this in April after RSV season has passed.

Baclofen seems to be working!

Here's an update until Mike can post some new pictures of our little soldier boy...

We went to see our new GI specialist on Thursday ... Dr. Baron said all biopsies looked fine.

The retching remains a mystery, but it does have something to do with how his tummy adjusts to volume. Doc put him on Baclofen, he gets 1cc three times a day...
and so far....

NO MORE RETCHING! Well.. he had one tiny retch which was nothing compared to the usual turning purple with eyes bugging out.

Since this drug is a muscle relaxer... we have noticed him being a bit wobbly when he walks ... we'll keep an eye on this and report to the doctor next week.... loses his balance very easy now.

He seems a little on the "testier" side :-/ ... but we'll see ...

We're thrilled that he's not retching ... but hoping the side effects won't last.

We GOSH DARN wish our previous GI specialist would have listened to us 8 months ago when we first suggested Baclofen (after friends of ours started their cardiac child on the same meds for a retching problem)!!!!!

OHHH and yes .....

Matthew has a brand new specialist to add to his huge doctor list...oh boy ...
you all must know how much we love spending our days in the doctor offices.

That will be a pediatric dermatologist .... Dr. Doug Thomas....
Matthew's had a weird rash on his arms and legs only..... for over a year now ... we've tried three different topical meds (one being a $265. can of foam) .... nothing seems to be helping.

We couldn't get in for five weeks .... so we'll know what's up with his skin at the very end of March.

Early morning pre-op

Yesterday we arrived at the hospital for Matthew's endoscopy at 6:30am. We met with the doctors, got Matthew dressed in his undignified pink gown, and then checked his vitals before he went into the operating room.

Post-op

Matthew was in-and-out of the operating room in 30 minutes. Thankfully, there was very little pain involved with this procedure so he awoke quite peacfully by comparison.

Endoscopy update

All went well today... in fact it couldn't have gone better. Matthew was a champ as always.
Mike will be posting pictures tomorrow. We took quite a few.

Dr. Baron was able to take a few pictures of his esophagus, inside his tummy,
the beginning of his intestines and the fundoplication. He said all looked normal.. except, the bottom of his esophagus is inflamed a bit. He took four biopsies of different areas and we will get the results when we go to our appointment this Thursday. After we find the results, it sounds like we'll be putting Matthew on a drug called Baclofen... apparently it helps w/ spasms. I know another family in LV of a cardiac baby that used to retch ~ he was put on Baclafen and quit retching.
Our previous specialist wasn't interested in trying Baclofen.. I guess it's fairly new to the "world of retching kiddo's" ... this drug is typically used for kids that have spasms related to cerebal palsy. Don't worry.. Matthew does not have cerebal palsy.

We are anxious to try it and see what happens. Our friends swear by it.

So far, his retching remains a mystery!

Endoscopy today

We're getting ourselves together now to have Matthew at Sunrise Hospital by 6:30 am for his 8:00 am procedure. We are thinking we'll be home by noon.

Mike intended to put up some cute pics of Magoo yesterday, but life got in the way :-)

Please keep Matthew in your prayers today. He will be put under during the procedure, so it should be painless.
We never like being in a hospital during RSV season.. we are hoping to keep him healthy!
So far, been very healthy this winter... WOOT!

I sure hope this will be the LAST test for a while and we find out what is causing this retching ... and of course, we hope whatever they find will be a relatively easy fix.

Thank you! Mike & Terri

Oh.. the Mannings have posted the cutest pictures of Mason and the family over on their blog... link below.

Matthew's test results

Dr. Baron, Matthew's GI specialist called yesterday afternoon... his gastric

emptying study was normal. YAY!

We will be going Monday morning to the hospital for an endoscopy ~ they will

put him "under" for that. Thank God they will put him to sleep BEFORE the

IV is placed. Whew, that's a relief for me ~ I stress about that.

Today is such a big day for our dear friends w/ cardiac babies. Lincoln just

had a heart transplant last night... came out at 3:30 am this morning... Mason

went in first thing this morning for his heart repair. I have posted about both

of them below. Links are provided.

I will be busy praying for these little guys. Thank you for

your prayers.

Endoscopy scheduled

Funny, the billing department of the hospital called us today

to confirm all of our insurance information for Matthew's

Monday, February 19th Endoscopy.

We didn't even know that one was scheduled. :-/

I'll be calling Dr. Baron tomorrow to find out the results

of Matthew's gastric emptying test.
I am hoping to find out the time of his procedure Monday.

Matthew's Gastric Emptying Study

Matthew was a real trooper today. They gave him some mildly radioactive fluid and then took images of his digestive tract every ten minutes for an hour. We will get the results Thursday. Terri & I were relieved that the contrasting fluid went in through his g-tube and not down a tube in his nose. Based on the results of this test Matthew will likely need another test of his esophagus. As you can see by the look on his face, he was quite apprehensive about being in another medical office. At first he sounded his displeasure. Then, as it has done so many times, his mood turned to quiet acceptance of the way life can be.

Another test tomorrow

We'll be taking Matthew to a diagnostic center at 7:30 am for a "gastric emptying study" ~ we are still trying to find out what is causing his retching. The upper GI he had a couple weeks ago didn't show anything was wrong w/ his stomach ... and the fundo hadn't slipped. We were happy about that! They were unable to do an "esophagram" because he doesn't take anything by mouth. That was too bad, we were all very curious what that might have showed.

The test after this will be an "endoscopy" where they take a peek down his throat, they will put him "out" for that.