Friday, August 14, 2009

Like Camping, Minus the Fun

We headed up to Mercy Hospital in Buffalo for Nolan's endoscopy and 24 hour pH probe study. Since he is rather young and likely to rip the pH probe out of his nose, he would have to stay overnight for monitoring.

We left our house at 5:00am to be there in time for check-in, and then proceded to the pediatrics floor. I was concerned about being in a "grown-up's" hospital, but this really ended up working to our advantage. The pediatric unit only has 12 beds, and most of those were empty. This meant the nursing staff was very eager to take care of Nolan, who charmed them with his antics.

I was confident that the DuoCal was working, because we've been adding it to all his food/drinks and it had to be adding at least 200 calories per day to his diet. Plus, he's been eating better lately. They put him on the scale as part of the check-in process. He was last weighed about a month ago and was 23 pounds, so I was pretty sure we'd see a number like 24 pounds pop up on the scale.

Nineteen and a half pounds.

The boy weighs NINETEEN pounds. How in the world does that happen? Essentially, he's gained almost no weight in a year. I do have a hard time believing that he's lost four pounds in the past month. Perhaps the scale in the hospital was a tad "off," but I also have a hard time believing that it is off by four full pounds. So he's definitely lost some weight, despite the DuoCal and eating better. I can't explain the level of anxiety this causes: how can a child eat more and weigh less? We'll go back to the GI doc in a couple of weeks and weigh him on the same scale as his first appointment, and maybe he'll come up a little heavier. I can only hope.

Nolan and I were taken down to the surgical waiting area, and our GI Doc and the anesthesiologist came in. My hopes for a doctor who could come up with a comprehensive diagnosis were dashed when the GI doc asked, "now what are those in his ears? Earplugs?" She didn't remember who he was, and didn't know that he wore hearing aids. I gave a brief recount of his history to the anesthesiologist, then they took him back for the procedure.

A short time later, we were retrieved and shown pictures of Nolan's digestive tract. Everything looks pretty normal, except for some very minor irritation on his esophagus. There is nothing that can visually explain why he pulls at his neck, often refuses food, and fails to gain weight. Don't get me wrong- I'm happy that there is nothing obviously wrong, but how do you "fix" something that has no cause?

We are to make a follow-up appointment in two weeks, and if all of his labs come back normal and and his pH probe is normal, then we will start at the behavioral feeding clinic in the hopes that some occupational therapy will get him to eat more. Though I'm rather stressed, since he has been eating more, and simply lost weight in the process. My mind boggles.

Anyhow, he came out of the procedure in a quite chipper mood. He was lying in his little crib and asking, "Mommy go?" to the nurses. They gave him to me and disconnected his IV. The pH probe was taped to his face, and he had "no-no's" on his arms. They had also placed socks over his hands, since Nolan appears to be able to bend the laws of physics and can still reach his nose even when he can't bend his elbows.

Then Nolan and I waited. And waited. And waited. We had 24 hours to get through. A two year old boy, without the use of his hands, who was supposed to maintain quiet activities for a full 24 hours. The nurses really didn't have much involvement in our care- we were basically just camping out and waiting until the 24 hours were over. It really felt a lot like camping- no showers, no access to our usual diversions, and we got to sleep on a thin mattress in uncomfortable positions. Unfortunately, S'Mores were not allowed.

Nolan's "No-No's" kept his arms from bending

Watching Cars.

And STILL watching Cars....

I did have the foresight to bring along a DVD player, and my sweet husband went to the bookstore and bought me a few magazines. I think Nolan watched Cars about 15 times, interjected with a few runs of "Signing Time." Dennis headed home to take care of Matthew, and Nolan and I camped out. We found the playroom, and the doting nurses brought crayons and let us out into the general hospital area after evening fell. We roamed the halls and the maternity ward waiting area, and finally found the small playroom. I had to follow Nolan with the pH meter box the entire time, and was terrified about it pulling out of his nose. I did figure out a way to put the box over Nolan's shoulders, but that was a tad dicey since he's so small that the box almost touched the floor when he walked.

He finally fell asleep at 10:45pm. I fell asleep shortly thereafter. And we didn't wake until 6:00am- only two more hours to get through. We ate breakfast, played in the playroom, and the nurse came to pull out the pH probe. That wasn't fun, but it was fast and we were very ready to go home.

I have to call to make the follow-up appointment today, and we'll find out the results from the pH probe and the labs at that appointment. Only 2 more weeks of waiting to find out if all of Nolan's eating/weight issues are medical or behavioral. I hope these next two weeks go by quickly- this boy needs to "bulk up!"


Julia said...

Oy, what an experience! And how disappointing about the weight loss -- although there's gotta be something wrong with one of those scales. I hope you both have recovered from the ordeal, and that you learn something useful.

Jess has a PO Box on her blog for get well cards -- look for the post called "Update" on the 12th. I'm going to try to get something out today or tomorrow. Not that they know me from anyone, and yet these blog relationships do tend to run deep, especially when crisis hits.

Michelle said...

I've been really interested in following your blog for awhile now, as our sons have some similarities in their stories. (I think I found you through Deaf Village, but not sure I've commented before!) Although my son's weird, not precisely diagnosable eating issues have been resolving themselves over time, I am familiar with all of the tests, doctor appointments, hospital stays, anxiety, etc. that you're going through, and I hope that you will soon find some useful answers!

leah said...

Julia, thanks for the PO box info. I will definitely send Jeremy a card- even though they don't "really" know us, it certainly can't hurt!

And I do think the scale at the hospital was a bit off. They use a standing-up scale with sliding counter weights, as opposed to the digital standing scale at the GI doc's office. Our pediatrician's office still uses a baby scale for kids under three. WE'll see if we can get three scales with three different weights, lol.

Michelle, thanks for your comment! I went and read through your blog- goodness gracious you guys have been through the wringer! We wondered about AN/AD with Nolan (he has a reverse slope loss which can occur with AN and he used to have some present OAE). His OAE are gone now, though- so we are just dealing with plain old SNHL.

MB said...

That sounds like the world's most miserable test for a 2 year old. Here's hoping you get the results soon and that you actually find something out that can help you!

Lucas'Mommy said...

Earplugs? I can't believe a medical professional would even think that! Glad it went well... can't believe he lost weight with the DuoCal. I hope you get some answers soon!

rouchi said...

MY GOODNESS, what have you both been through.I nearly had tears in my eyes looking at him with his hands tied up.You both are really brave.My prayers for both of you. I pray that all his reports are normal.ALL THE BEST.

Jenny- Sienna's mom said...

I can sooo relate, Sienna was put on Pediasure and they assured me that "for sure she will gain weight on this!!". To my surprise, her weight has been a roller coaster ride. I might just look into the Duocal, where do you buy it? My mind boggles too over the entire weight issue. Good luck! Hopefully there will be no more "camping" for you, I know what it's like to be trapped in a hospital room with a 2 year old.

AimeeTheSuperMom said...

Little Guy had the 36 hour ph impedence probe during our marathon hospital stay. He was a pro at trying to take it out, too. After all that, we learned that gastric issues were not his problem.

Herding Grasshoppers said...

Oh Leah,

Sounds like you could write the book on frustration! (Earplugs! Good grief!)

The scales must be boogered up... he just can't have lost four pounds.



Krystal said...

Hey Leah!

Thanks for commenting on my blog! I would love to email with you about our common experiences if that's ok with you! I think I will probaly have alot of questions of the coming months :)

Hope you are having a great day!
My email is