After eight hours of evaluations with a Developmental Pediatrician, Speech Language Pathologist, Psychologist and Occupational Therapist, along with questionnaires from my therapists and teachers, I was diagnosed with Autism Spectrum Disorder. (Or as we call it at home…Too Charming, Smart, and Handsome For My Own Good Disorder.)
THEN WE RODE ON THE TRAM!
Yesterday, I went to Doernbecher for an Upper GI x-ray and a consultation with the surgeon who will be placing my gastrostomy tube. During the x-ray, I got to see the pictures of barium going into my stomach. And I told the nurse my favorite airlines and she told me she’s going to Texas on Alaska Airlines!
It was a really icy day, but, of course, we still rode the tram. This was our view:
And here’s a picture I took of the tram from the 7th floor of Doernbecher!
The hospital has been giving me free tickets for the tram. I love giving my ticket to the tram conductor.
My most recent visit was to talk to the gastroenterologist about a g-tube. We’ll most likely be going through with it, but we have one more consultation with the pediatric surgeon. I’ve been feeling so well getting good nutrition and hydration through the NG tube. Everyone wants me to continue getting great nutrition and hydration to see what all I’m capable of!
Yesterday, I saw my kidney doctor and…who cares about that…I went on the tram again!
(My kidneys are fine right now. I’ll get another ultrasound in a few weeks.)
Yesterday, I went back to Doernbecher for a Modified Barium Swallow study. I had to eat and drink weird white stuff that shows up on an x-ray. After a slow start, I did it! Yay, me! (Oh, and there was nothing wrong. I swallow great. I just don’t like food that isn’t goat cheese or chocolate. Is that so hard to understand???)
After the swallow study was done, but before the dreaded NG tube was replaced, we went on the tram again!
Tram!!! 2 from the Dexter Video Collection.
Yesterday, I went back to Doernbecher Children’s Hospital to get my nephrostomy tubes removed. I spent some time traveling through this hall while I was in the hospital, but this was my first time walking it on my own two feet. Victory lap!
But first…we rode on the Portland Aerial Tram again!!!
Tram!!! from the Dexter Video Collection.
Yesterday was my follow-up appointment with the urology department at Doernbecher’s. I’m an old veteran at this ultrasound stuff now. It showed that my kidney stones passed on their own and I can have my nephrostomy tubes removed!
And afterward, I got to ride on the Portland Aerial Tram, which leaves from the hospital. And they gave me a sticker!
(By the way, yes, I’m wearing the same two shirts every day. With my NG tube going through my nose, I don’t like it when Mommy or Daddy puts a shirt over my head. So I alternate between my two button-downs. You’ll be seeing a lot of these shirts.)
What we originally thought was a stomach virus turned out to be much more. After being dismissed from my first trip to the emergency room, my second trip there turned into a week-long stay at Doernbecher Children’s Hospital. In the ER, blood work showed that I had acute kidney injury. At this time, it was believed that dehydration from my stomach virus caused it and I would bounce back after being given IV fluids.
It was serious enough, though, that I was admitted into the hospital. This would be my home for the following week.
Though lots and lots of fluids were coming in, nothing was coming out. Doctors were starting to worry about my very dry diapers. An ultrasound showed swollen kidneys and possible kidney stones at the end of both of my ureters, just as they enter into the bladder. A CT scan was necessary to confirm the kidney stones. My feeding therapist, Miss Christine, offered to take care of Chubs for the night so Daddy could come to the hospital, and she sent him up with my very favorite airplane toy from our therapy sessions. I brought it with me for my CT scan.
The CT scan confirmed that I had kidney stones in each ureter, completing blocking access to my bladder. Toxins in my body were making me feel very sick. I had emergency surgery that night at 1:00am to insert stents into my ureters. It was unsuccessful, though, due to how large the kidney stones were. I waited until the next afternoon to have nephrostomy tubes inserted through my kidneys to allow them to drain.
That surgery was a success and I quickly started feeling more myself again. People from the hospital started bringing me toys to play with in my bed.
Nana and Papa sent a fighter jet balloon.
Mommy’s friend’s son, Quinton, donated two airplanes of his to bring to me because he heard I loved them more than anything.
The nurses were really nice. Whenever something would start beeping in my room, I told Mommy she needed to call the nurse to have them turn it off.
After a few days, I left my room for the first time and headed down the hall to the playroom. I was not feeling strong enough to walk yet, but I finally set upright in a chair for the first time in a while.
People from the hospital kept bringing me toys!
We were all very tired from everything that had gone on.
A therapy dog visited and slept with me on my bed.
I was wheeled up to the radiology department to get another ultrasound. It looked like one or both of the stones may have passed!
The physical therapist wanted me to try standing a little bit. Mommy and Daddy put this cool car toy on a low bed to get me standing.
The last thing I had to do before getting out was a pyelogram to confirm whether or not urine could pass from my kidneys into my bladder. It could! This was really good news!
The nurses capped my nephrostomy tubes and I played with my car toy while waiting to be discharged. This week, Mommy and Daddy will make sure I am peeing in my diaper like old times. Next week, I’ll see my urologist so we can plan to remove the nephrostomy tubes.
Bye, Doernbecher Children’s Hospital! Thank you for making me well again!
After days of not eating, not drinking enough, sleeping around the clock, complaining about chest and stomach pains, and – gasp! – not caring about airplanes, I found myself in the emergency room of Doernbecher Children’s Hospital. I can’t say it was the most fun 6 hours of my life. But I’m a trooper and the toughest kid around.
Yesterday was my big developmental evaluation at the Doernbecher Children’s Hospital. I’ve been on the waiting list for months and the day was finally here! And it was…so boring. Four hours of questions and “games” with a developmental pediatrician and speech language pathologist. And there was almost no talk of airplanes!
I was told I get to come back for another round in a few weeks with an occupational therapist and psychologist. Sounds like a party. 😐
