Hope for Life

The silence here at night is deafening. Once in awhile a child screams out in pain and I am numb to it. There was a time I would have cringed at that sound, my heart would have ached for them. Not now. Now I think 'thank god that child has the strength to scream, the energy is there, they are alive.' Alive...not well, but alive. I took too much for granted, now I need hope for life. Stay strong little man...you are my hero.

Friday, April 8, 2011

Switching Gears, Quickly

Well, things have changed since I posted just yesterday as they can in the crazy land of mito management, Krystal talked yesterday afternoon with Bio Chemical Diseases at Children's about the nightly vomiting, which had been going on since last Sunday. His Bio Chem doctors had a conference and they said while he looks great, his blood-work seems ok, they think that something sinister may be happening in his gastrointestinal system and said if he vomited that night to go straight to Kamloops and be airlifted to Children's. We decided he WAS going to barf because he'd been consistent with it for 5 nights in a row and Ayzac was taken to Vancouver last night by mommy and daddy bypassing a panic trip.

We are really hoping he just needs some "maintenance" and "fine tuning" and all will be well and a green light given for that ever so important G-tube surgery on the 14nth. We should know a lot more tomorrow once all the "ists" have inspected him.

-Lorna

Thursday, April 7, 2011

They Can't Resist His Charm

Ayzac is off to clinics again this weekend, most of it should be routine (hopefully) because the results from the MTDNA won't be in just yet. He will see his "ists" for the most part of next week.

Ayzac (hopefully) will be getting his G-tube surgery on the 14nth. This will be an important event, while it means learning a whole different way of feeding and medicating him from the NG tube he currently has, it also means we don't have to mitt his hands anymore. He has become adept at pulling out his tube even if you are watching closely, he's very quick about it.

He's had some minor bumps since being home from his bout of pancreatitis but nothing that has sent him to Kamloops or Childrens. He is still struggling with vomiting and the cause is mysterious but it is coming and going.

He has been on a continuous feeding schedule since he came home from Children's last time, meaning, he is being fed through a pump, very slowly, all day and night. If Krystal tries to speed up the feeds, he throws up, if she gives him a bolus feed, he also throws up. That he cannot tolerate his formula since his pancreatic episode is concerning. I couldn't help but wonder if it was the new formula but Krystal says it's far gentler than the one he was on before so it shouldn't be bothering him. (the smell of it, I might add, is NOT gentler and I can't blame Ayzac for not wanting to take it by mouth; it's gagarific). Additionally, the blood work that shows levels for his pancreas are still elevated, way down from before but still not within normal range yet, even though they are still falling.

He's been great the last few days, barfing aside, cooing, gurgling and very smiley. He seems to enjoy his new highchair and is responding to sign language. He has the most amazing personality and knows when he's being funny, he is also ticklish almost everywhere and his laugh is music to our ears.

-Lorna