Friday 29 March 2013

A Field Trip to McMaster ER

After the fiasco on Friday night where no one in our local K/W ER knew what my PEG tube was and what to do, we were told to contact my Pediatrician Monday morning.

Mommy made the call, and Dr. Rosner had suggested to contact CCAC (which is the community care access center) and if they can't help us, unfortunately we would need to make the trip to the McMaster ER.

Mommy spent her entire lunch hour getting passed around to different people within the CCAC network since no one could answer her question "Do you fix PEG tubes? Is a nurse able to come out and fix?" Finally, after an hour of getting passed around the last person asked one of her colleages, to which the answer was "No, we don't do that, but if you need a nurse to come out on a regular basis to check on him, you can have your doctor submit a referral." Thanks CCAC even if you lied to me about not being able to fix PEG tubes, my confidence in you has decreased more that it already is! So McMaster it is. Mommy made the necessary plans to take me on Tuesday. Even better my Auntie Heather offered to come with us.

Tuesday rolled around and we left house at 8:30am, picked up Heather and went on something called a "road trip". Little did I know where we were actually going...
Mommy took forever to park the car in the parking garage, I didn't think we would ever get out of the car and stretch my legs.

We entered this building and as soon as I smelled the familiar smell of McMaster Hospital I knew I was in for something to remember with this "road trip". Mommy checked me in and we began the wait. I heard my name called from somewhere behind the wall, I took off, maybe this person is here to save me! But alas, he is not, he was another Triage man wanting to squeeze and prod me. Since I had already been through this may times before I knew what was coming and with that the check-in was complete.

Watching the Incredibles
We got called back into the ER where I was set up in my own room, with get this folks... a flat screen TV! No sound, but at least I could watch the colourful pictures roll by. By the second viewing of a soundless "The Incredibles", we were finally seen by a resident on the general surgery team. He took a look at my tube and him and Mommy tested it with a bit of water to find out where it was leaking. He left and brought us back a roll of waterproof tape. He said that they will patch the leak until they can get me an appointment with Dr. Fitzgerald. (He was the surgeon that put the tube in). He said that they run clinics on Thursdays so he will be back with an appointment card. Mommy asked if there is anything they can do today so we don't have to leave and come back, the resident said no I would have to have an appointment because this isn't an Emergency so all they can do is tape it up. He proceeded to do this and left to schedule me an appointment.

20 minutes later he returned with a lady in scrubs, she took a look at my tube and said that it comes apart and we can just replace the end. She told the resident to take the tape off and she showed us and the resident how to take the piece out, then put it back together to search to see if they had that piece in the OR. The resident returned with the part and 30 seconds later I had a new end and a fixed tube!

Mommy asked if they had an extra that we could take home and he said that they are really expensive so they can't give them out. However, Mommy knows what it looks like now and figures she knows where to get the piece from in town.

Oye, some adventure, at least it ended with me NOT in the Operating Room.

Sunday 24 March 2013

The Misadventures of Ethan Reimer

What would an adventure be like without the misadventures.....

I am happy to report that since my last post I was eating like a champ. Nothing new, but definitely more volume of my accepted foods, plus I was taking my "goal" of 16oz of formula daily via my mouth. Things were looking up!

Judgement day had come, I was waiting patiently at the outpatient children's clinic at Grand River with my Mommy. Mommy was rushed in the morning trying to get me ready for my appointment and had forgotten my diaper wipes. Not a problem, I never pooh in public.
I looked up at her with my big blue eyes and a smirk the size of my face. Not 1, not 2, but 3 giant juicy farts later and everyone could smell what the Ethan was cooking. This was the worst I had smelled like in a long time.

Ethan and his appointment card. You can also see the "algae colour" in the background
Not a problem, it's a children's clinic, they must have diaper wipes. Right? Wrong! They have face towels. I was called into the room, my diaper was changed. I could tell it was incredibly gross as mommy yelled "it's incredibly gross!" I was weighed, and even after this fiasco I saw 22.5 flash below me in big red numbers.

Dr Rosner and Lynn entered the room and immediately commented on the "smell". Mommy told her that my pooh was the colour of the fish sticker algae behind me on the wall, accompanied by all these white things in there as well. Dr. Rosner, said that it sounded like Giardiasis, and asked mommy if it had been going around my daycare. Nope, but ringworm is, and I definitely don't have that.

Dr. Rosner commented that she liked my gains and for me to keep it up. She gave  me an appointment card for get this, ladies and gents.... 1 full month later! The day after I turn 2. No more bi-weekly visits for this boy.

Since everyone was getting too comfortable with my gains, I of course had to shake things up.
We enter the misadventures of Ethan Reimer....

The next day I woke up and burped in Daddy's face, yum rotten egg burp. I continued this for the next few days, along with my rotten egg farts. The smell was coming out of everywhere. I also have not eaten anything since judgement day, (we are coming up on 7 days now). Don't worry folks, I have been tube fed, so I do not die.

Thinking that I needed more of a misadventure, while I was at daycare Mommy got a call at 5pm saying that I had a fever of 100.8 . She came to get me to take me home and to tube feed me some formula and watch a bit of Disney Jr! Daddy came home and gave me a hug, to find my entire person soaking. He investigated and the result... A leak in my plumbing!

We packed my bag and took off to the ER on a Friday night at 9:30pm! Oh this is going to be fun!  As die hard Ethan readers will remember, Fridays are not good days for me and hospital visits.  But what better way to spend your Friday night than with your family?  So daddy dropped mommy and me off at the door while he parked the Jeep.  We were whisked into the triage area where a young paramedic took to getting my vitals.  He was very nice but I think he was still learning the ropes.  It's ok triage man, we know how things work around here.  He hooked me up to the blood pressure machine and pressed the go button.  After a little over a minute, the machine displayed"C02", the man looked confused and asked out loud "what does C02 mean?"  Mommy looked at him and said "it means you have to press the button, he moved too much."  Next he wanted to take my O2 stats by placing the sensor on my finger.  Thank goodness mommy was there to interject and suggest my toe as I don't very much like my fingers being pinched.  Next it was time for my temp.  He grabbed the thermometer and looked me over deciding where he thought it might work the best and asked "will he take his temp in his mouth?"  Mommy stopped him once again and directed him to my armpit. Silly triage man, don't you know I have an oral aversion?  Finally I got to stand on the big boy scale fully dressed, with my shoes and everything, I weighed in at 22.8lbs.  Not sure how accurate those scales are for little people, but it made me feel good to use it.

A short 60 minutes later, we were seen by the on call ER doctor who took one look at my tube and said "we've seen these before but most of the time the parents bring in the parts and tell us what to do."  He probably was talking about a G tube with replaceable components while my PEG tube is all one piece and is not used in Waterloo.  The doctor called up to the pediatrics and ICU wards and asked them to bring down whatever tube pieces they had.  The nurses came shortly after carrying pieces for an adult size G tube however I am just a little squirt with a PEG tube and nothing was my size.  So after some more deliberation, they wrapped my tube in some tegaderm film and sent my parents home with a small metal clamp used on catheters.  We are not using this.... duh.  They suggested we call our pediatrician Monday morning.  The doctor, who also moonlights at the local mini mart, reminded us that the ER is open 24 hours.  All kidding aside, he was nice man.

"The Solution" in KW
Ethan's leak under the Tegaderm Film


We exited the ER and started walking to the Jeep.  I was nestled snugly in my Mommy's arms and had made it only a few steps out of the building when I puked all over Mommy.   Mine and Mommy's persons were now saturated by an entire bottle of vanilla flavoured off brand pediasure that daddy had been tubing me all night. A perfect end to a perfect day. 



In other news...

We got a call from Kidsability letting us know that I have been accepted into the "target words" program.  This program provides weekly parent training sessions starting in early April and runs for 10 weeks.  Of those 10 weeks, I only get to attend 2 weeks in which I am video taped while my parents try to get me to talk.  Otherwise it's all about Mommy and Daddy.  Let's hope they learn lots.

As for my talking progress so far, I'm up to 9 words.  My vocabulary consists of:  Hi, Bye, Mama, Crash, Go, Baby, Yum, Uh-Oh, and Choo Choo.  I'm not hooked on phonics yet and most of these words don't sound quite right but I can successfully convey my point.
Video below shows Ethan learning a new word: Baby
Ethan's new drinking water container




In addition to finding a few new words this month, Mommy also got me to drink out of a new water container that uses a straw.  It's way different than anything I'm used to but it sure does makes me feel like a big boy to use it.













I'm also gaining some new art skills which I think I have neglected to mention.  I not only have taken a liking to colouring with a range of markers but I now use a paint brush to splash some big dabs of paint on a page in my colouring nook.  Watch out Vangough, I have both my ears and a growing enthusiasm for impressionistic art.

Colouring