Answering questions.

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We’ve been asked by LOTS of friends/family what exactly is wrong with Regan. Until now we haven’t had definitive answers. So let’s get on with the process of answering the question.

Thursday was a LONG day of stripping bedding & clothes, baths, diaper changes, and loads of laundry. The Milk of Magnesia CLEANED him OUT. I changed 15 diapers! I haven’t changed that many diapers for Regan in one day in a while. I do not miss it! Never mind the baths and laundry. And it was WAY to cold out to open up the house. Fabreze just didn’t quite help with the smell. (Diapers get taken outside right away, but still the stench would just linger!)

Then we got to wake up at 4:30 AM Friday morning to drive down to St. George for Regan’s Scopes and Biopsies. He had a Colonoscopy and an Upper Endoscopy (EDG), with biopsies taken from both areas. Another LONG day. My Dad met us and took Kaylee off to play with Yaiyai.

The only thing Regan found upsetting about the whole affair was that he couldn’t finger suck when he woke up. They put the I.V. in his finger sucking hand and had it all tapped up. Mister Man did not appreciate that. He has been VERY clingy the last few days. So I am only now getting a chance to do an update.

So we have video and photos of the scopes, but you don’t need to see them. (Jon really wants me to post them.) They are not for everyone. Kind of graphic and gross. But we did get some good information from the scopes. Regan has Colonic lymphoid nodular hyperplasia (LNH). He may also have some mild acid reflux. We get the biopsy results from both scopes on Wednesday. Then we will know if there is anything else going on.

LNH means his body doesn’t react to food allergens until it’s into his large intestine and colon. So once food gets down there his colonic lymph nodes get all inflamed (kind of like hives) and his body cannot digest food and absorb calories and nutrients. It’s a “delayed-type food hypersensitivity”.

Which for Regan results in chunky Butt Vomit (diarrhea), weight loss, malnutrition, anemia……….. Dr. K said it was sort of like anaphylactic shock, but just in a different location. So he won’t suffocate and die immediately like someone with a severe peanut allergy, he will just slowly wither away from starvation. (Fabulous. Right?!)

SO our newest game plan is to do a round of steroids to reboot his system. I guess since his body has been in overdrive for so long it’s just overreacting to EVERYTHING now. We will also be getting a more extensive allergy panel done. The super fun skin prick test to find out what else besides wheat and dairy we need to cut from his diet. Because it’s clear that there IS something that the first test (blood draw) missed.

Jon is working on getting me the pictures. I’ll post those ASAP. The cute ones. Not the gross ones. 🙂

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A warning and other stuff

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We will start with the other stuff.

Regan is on a clear liquid diet in preparation for his scope. Clear juices (apple) and lime jello. YUM! And has to drink this nasty stuff. Have you ever had it. I have, it’s awful stuff. Regan agrees! It should be a lovely (enter sarcasm and a cringe) day tomorrow keeping him away from solids and force feeding him the nasty.

But the cleaner his insides are the faster and more efficient the scope will be. So we will power through. And he is the youngest patient so he gets to be first. So that’s something right? He will get to eat at around his normal breakfast time Friday morning. So no starving him for too long.


Sam was working and we were SO hungry after Regan’s appointment so we went and grabbed a bite. (Olive Garden is in visual proximity to Dr. K’s office.) As we were packing up I noticed that she left us a warning. It made my day. Every time I open the fridge and see Kaylee’s leftovers it makes me smile. Sam’s the best! I really LOVE the smiley face next to the “or else.”

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Kayleeism and a Regan update

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Is it sad that our 2 year old knows how to give exams from viewing SO many? Or that we are comfortable enough in our Dr.’s office that we help ourselves to supplies for Kaylee’s entertainment while we wait to be seen?

She was telling Jon to say, “Ahhhh.” (notice she even has her gloves on.)

She really likes to stick the tongue depressors down our mouths (so gross). And when she is done giving all three of us a once over (she even tells us to sit on the exam table) she throws everything away into the bio-hazard bin (yes her hands get disinfected after). Maybe she’ll be a doctor when she grows up?

Regan seems to be is regressing. He has lost 7 oz in less than a month. Which for another child is probably no biggie, but Regan is skin and bone to begin with. For him almost 1/2 a pound may as well be 20.

We went and had a visit with Dr. M on Monday to check out some swollen neck lymph nodes and to see just how much weight he had lost. (I knew he had lost due to clothes fitting baggy.) She recommended that we go ahead and get the scope since the BV is coming back and he is loosing weight again. So we have an appointment with Dr. K tomorrow. Regan has to be seen within 30 days of a procedure for the insurance to be happy. And since he was doing so well it’s been over a month since we last saw Dr. K. He is already on the scheduled for the scope and biopsy. That gets done on Friday.

So this week I will feel like I live at Dr’s offices. It’s a REAL good thing Kaylee LOVES Dr. offices. Oh, and his lymph nodes are swollen, but not worrisome yet. We have a list of things to watch for.

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