ECHO #2

Yesterday morning was my follow up ECHO. As you are aware the intention was to sedate me. I would need to go to the OR to receive an IV line as it is hard to find veins on me now, and also I was to be admitted in the hospital for at least an overnight stay to monitor my blood chemistry, as I do not do well on IV fluids. However the cardiologist thought that all this was unnecessary since I wasn't even going in for surgery, and informed my mommy that she will try to conduct the ECHO without sedating me.  This will be particularly tricky as there are 2 main reasons why they use sedation for this procedure.  The patient needs to be very still during an ECHO to get accurate results, and last time I checked, I don't understand the "stay still" command yet.

Mommy's plan was to try to keep me up for the car ride to Mac, and therefore I would sleep during the hour long procedure. Grandma was supposed to visit my GreatGrandma that day, but she loves me so much she offered to come along to make sure I was fed and to keep me awake as mommy had to drive.

As soon as the wheels started to roll on the car I was out like a light and didn't wake up until I could see the McMaster sign on the hospital building. Was there a plan B? Unfortunately not.

The lady that was conducting the ECHO on me, was named Rose, she weighed me in at 8.12kg and kept calling me "big boy" to my mommy's dismay. She commented on my last ECHO that the report indicated "baby cried through the entire procedure".  Great.....

I was laid down on the hospital bed, she put a few "purple heart" stickers on me to monitor my vitals and squirted some cold sticky gel on me.  She calmed me by telling me it was just like having a massage and that people usually pay big bucks. She let me listen to my heart beat a few times and I got to look at the screen and view my heart, which was pretty awesome.

I was a very good boy and laid as still as I could for almost the whole procedure, I only got fussy for the last 5 minutes.  Rose said I was done and that she will give the information and pictures to the main cardiologist who looks at the results that day and submits a report to my doctors in 7-10 days.

Mac

I fit a bit better this time

Mommy, Grandma and I headed to Mac for my follow up swallow study last Friday. My metabolic team has been urging the radiologist to test me again, as they know how hard it is to get kids to start taking food orally after being Gtube fed. The earlier I am deemed safe to take food orally the higher the success will be to get me to take food by mouth.  As you guys know I have been cleared to take 0.10 mls of formula orally from a syringe. So, my mommy started giving me 0.50 -0.75 mls on Thursday.  I was loving the taste and couldn't wait for more.

Enter Friday..... I was strapped into the "drop zone" chair for the second time in my life. Mommy was instructed to put one of the bottles in my mouth. It felt foreign and the barium inside was chaulky and horrible. I didn't drink any thing.  So they moved on to the syringe. Still horrible, I spit everything out and I started to scream. They moved to pureed formula and it was equally gross with the barium in it.  Kate came out and told mommy and I that the test was done.  They were not sure what they saw, as there was minimal data, however Kate was not hopeful in what she thought she saw.  She told us that she would review the video again and come up with a plan that would be safe for me and let my therapists know how to proceed.

My parents and I received an invitation for my buddy Emerson's dedication which was being held on Sunday. We joined them in Grimsby at their family church for the ceremony. His parents gave a heart filled speech about Emer and also included me and my parents in their prayers. My parents teared up as they knew this day was supposed to be special for Emerson, yet they graciously included our family. We finally got to meet all the people at the church that have been endlessly praying for me and my parents. It was so nice to meet you all and we continue to thank you for your thoughts and prayers.

We were invited back to Heather and Paul Robertsons to view their "Medical Oasis" or othewise known as "The Roberson's Medical Facility".  The Robertsons are a family we met through the Rutledges at Mac. They have 2 children with mitochondrial disorder and Heather also deals with this disorder as well.  They have been a support and endless knowledge for us, we would be even more lost without their guidance. They bestowed upon us an early thanksgiving gift.  Boxes of syringes and medical supplies!  Who would have thought medical supplies could elicit such excitement! 

We headed to the Rutledge palace for company and pizza. We have only known the Rutledges for a short 5 months, yet we feel like we have become part of their family.  We have been down winding yet parallel roads.  We have been shoulders for each other through pain and sadness.  We have been each others light when all that remained in the dark of the 2 am hospital room was a glimmer of hope.  We have shared meals and games of cards in the midst of all the medical mayhem we were put through during our time at Mac. We share the same worries and uncertainties. We know they just get it without having to speak a word.

Monday we headed yet again to Mac, this time for a pre-op assessment with an anesthetist. Mariya has ordered a follow up ECHO. I received my first echo at 6 days old and everything was normal. However, if I do have a mitochondrial disorder my heart may have become enlarged since last time. My parents are worried that I will have to be sedated as cardiology has ordered a sedated ECHO since I am an infant. My parents are extremely worried as I do not do well with IV fluids, so the anesthetist will recommend that I am admitted for at least one day for observation after my ECHO.  This information did nothing to ease my parents concerns....

We met Mariya and Amy for my metabolic clinic.
She explained my case to her student resident and disclosed my admission blood work numbers that had caused her to run me through the hospital full speed to the ER.

pH:7.00
Lac: 12.6

Now many of you should remember me mentioning in a previous post that Mariya explained that with a pH of 7.0 cells shut down and do not come back from being that acidic. This is why she told my parents that if I hadn't been at the hospital on that Friday I would have passed away in my crib Saturday morning. She went on to explain that for weeks I did not respond to any treatments and my prognosis looked grim, however one day I just turned around for what seemed like no apparent reason. For this I am her love.

Mariya was upset to find out that cardiology planned to sedate me. She said that she didn't want the mask to go over me, that it wasn't necessary.  She said that hopefully she can call in a favour and see if the cardiologist will either conduct it without sedation, as she is just looking for the enlargement and doesn't need to be complex, or if there is something they can give me so I can just sleep for a little bit and not knock me out. So we'll see what she can strum up.  She also said that she doesn't want to keep poking me unnecessarily, so my blood work has been changed to "whenever my parents or doctor think it's necessary". I love her more and more every time I see her!  She lectured my parents to make sure they make time for just the two of them, she said she doesn't care how they do it, but they must. They explained that it's hard to get care for me as they can't just call up the neighbourhood baby sitter.

Mariya was watching me play with my daddy, and said she was happy with my progress and I will come back to see her before she goes on christmas vacation. She was still saddened that I did not smile at her, however mommy explained that I am starting to be fearful of strangers.  Amy said that it was good and it was what I am supposed to do at my age.

The skin tests are not back, as they had to thaw more of my skin to confirm the "unusual results" the lab thinks they found in the initial testing. Mariya is hoping they tell her something soon, and will let us know as soon as they come back.

We are really glad to have her as my doctor, she has been such an advocate for me and her ability to act quickly and think outside of the medical box has saved my life numerous times.