Saturday, August 1, 2009

Scope is Done, Researching Celiac Disease

Sorry I didn't get this typed up faster, but here's update about the endoscopy Sean had done this past Thursday.

Sean handled the stay at the Same Day Surgery Center pretty well. Mostly I just had to work on distracting him all morning from eating or drinking, as the surgery wasn't until 11:15 and he hadn't eaten since 9 the night before. I heard "Momma! Eat! Drink Milkies!" at least a hundred times in the 4 hours he was awake before the surgery. This is what Sean looks like when you tell him, "Sorry, baby, no eat yet."

Doug took Aidan and Ella to his office to try to watch while he worked and I took Sean to the hospital by myself. I packed his backpack full of things to try to distract him with while we waited. I thought it might be useful to list them here and I'd love to hear what fun things you pack for your kids in these situations. I always find out that I should bring x and maybe not y next time.

1. pull ups and wipes
2. food, spoon and sippy cup for after surgery- important to keep this hidden in a separate bag within the backpack. Otherwise it's just plain mean torture!
3. his lovey blanket, given to use when he was an infant at the Denver Children's Hospital. We use it for naps and it's been to every hospital stay.
4. a few favorite books. This time: Chicka Chicka Boom Boom, Brown Bear, Brown Bear, and The Big Red Barn.
5. 2 Disney Cars toys (McQueen and Filmore.)
6. 3 Madagascar action figure toys.
7. Woody
8. Blank sheets of paper and 4 washable markers.

I also tucked my keys, wallet and cell phone in there. I grabbed about $3 in quarters in case I needed to get a vending machine snack/drink for myself. Sean's favorite item this time was the markers and paper. He just loves coloring and having me draw things for him.

Anyway, the nursing staff was very nice and Sean charmed them. He throws a huge fit about those hospital bracelets, so I put them on his ankle so he doesn't obsess over it. They said he didn't need to wear a gown (very strange! never heard of that!) so he just went back in his clothes & shoes with his blanket. They didn't have to do an IV, just gave him a bit of gas and then did the test.

His doctor came out to see me about 30 mins after they took him and gave me photos she took to tell me what she saw. She said his esophagus looked wonderful and healthy- no signs of food allergy irritation or reflux damage. His stomach also looked pretty good, but had a small red spot that she took a biopsy from. She said it did not look like an ulcer and wasn't too concerned about that. She did find a bit of paper that Sean swallowed (he loves to eat books and must of chewed a bit off while we were waiting!) She said they suctioned it out and moved past it.

Then she got to the short bowels aka small intestine. She said "His short bowels are not healthy. I don't like what I see there." She pointed to white areas and said that she took 6 biopsies from there. She didn't say she knew exactly what it is, but is leaning towards Celiac Disease. She said she should have the blood screening results back on Monday or Tuesday and will call me right away. The pathology results take 10 days, so we won't know anything for certain for awhile.

When the nurses let me back to get Sean he was crying and asking for me. As soon as I held him he said "Momma Milkies! Drink Milkies!" I picked him up and wrapped him in his blanket and they had us move to a semi-private waiting area with recliners. He was also very upset because one of his shoes had come off and he wanted it back on. :)

We had a nice snuggle and milkies, then he ate 2 packs of food and snuggled a bit more. After about 20 mins he was alert and ready to move around. He wanted to look out the window, play peek-a-boo with a nurse, and say hi to everyone that walked by. Meanwhile, the other kids coming out of surgery are crying and generally very upset. I was having a hard time keeping Sean "resting" so they let us check out in less than an hour.

He did fine on the drive home and had no ill effects from the test other than being extra tooty from the air they pumped in him.

So now we are waiting to see what happens next. Of course I have been reading up on Celiac disease like crazy. I particularly like this link. I found this part of that article interesting:
The length of time a person is breastfed, the age a person started eating gluten-containing foods, and the amount of gluten containing foods one eats are three factors thought to play a role in when and how celiac appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear and the more uncommon the symptoms.

We are having a busy weekend with family visiting to celebrate Eleanor's birthday, so that is helping take my mind off of the wait. I will try to post photos of her party soon!


Beverly said...

glad it is over with. I know it is so hard to have to wait on surgery day with them not being able to eat. Hope you get the answers soon so you can know for sure.

JennyH said...

Glad it's over. Hope you get answers soon. waiting is tough!

Cute picture of him- even if he's upset!

Brandie said...

That must have been a rough morning. Sounds like it was worth it if she is already seeing things that don't look right. When Goldie was born I tried to find some info on preventing Celiac disease, not much out there. Its reassuring to know that breastfeeding is helpful.

kim said...

it will be such a relief when you can find out if it exactly celiac or not, and he is getting the test done at a perfect age too (generally around 5 yrs.).

if it is celiac, you will be able to help him tremendously!

we did this testing a year ago, and Wyatt ended up not having it, but we did find out that he has chronic gastritis, (we had a bunch of other test done for enzymes and such too) and that didn't surprise us either. he too has GERD pretty bad, but finally we are managing it too. we also found that he has a very small hiatal hernia, and some nodules on his stomach tissue.

did they give you pictures? they are pretty neat.

i meant to comment on your other post about the dairy problems you had, we had them too, the same thing, but very slowly we weened him from peptum jr (that stuff was great for maintaining his weight) on to milk - like 2 years, eventually he was able to digest it.

but yuck we had the curd throw up too - ugh!

good luck, and will await hearing results.

:) kim

Karen said...

We always pack Woody; anything else is optional.

We're praying for good results.

SunflowerMom said...

I did get photos to keep! I think they are cool, too.

Erin said...

Sean is such a beautiful, brave little boy! So glad to have found your blog through Renee at Life with My Special Ks...think you might enjoy my blog which focuses in on special needs advocacy and some personal insights! Hope to see you soon!

Jennifer said...

I hope you can get some answers soon. I guess if it's celiac, at least there are a lot more products available in the grocery store than there used to be. Good luck.

jane said...

What a trooper! It will be good to have some answers and direction, although the waiting is a drag.

Matt's cousin was diagnosed with celiac in his 20s. He has figured out what works for him and is doing very well now. Like a pp mentioned, there are tons of readily available food options in the markets now.

Big hugs for you both mama!

Cindy said...

Woody! Don't leave home without him!! We know all about that! :)

I am reading this post way after the fact and know that all turns out well with the Celiac & am glad for all that the testing is complete. :)