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.

Thursday, August 18, 2011

6 days home.........

and then airlifted once again, the worry was he was developing pancreatitis again but the bloodwork numbers were just a bit off for that. I lay awake one night with a hunch and rolled it past Krystal the next morning and she thought it was a great idea but the docs originally blew it off,thinking that couldn't be it.

When we took him for bloodwork on Tuesday, he was upset the entire time he was accessed, absolutely not normal but it had taken two tries and he was calm as soon as it was over so we blew it off. When we took him to 100 Mile Hospital they again had to try twice to access him and he was inconsolable. He broke a fever, very dangerous to him and of course the call was made, thinking it was pancreatitis. When Krystal can't console him, something is seriously wrong, he is generally a very happy baby, despite his struggles.

As it turns out, he does have a line infection in the VAD which is at least treatable, and hopefully not with a new surgery to put in a new one but only with antibiotics. He is not in as much pain already with broad spectrum antibiotics started in 100 Mile House. The treatment takes time, 10 days with meds in the line, a 2 day break and retesting. If it's longer, I may tag team with Krystal so she can come home and get Kazzdon ready for school and his birthday.

The leftover mystery with his trip is why were his lipates up and nothing else and why were they up? Insert big green question mark here.....

Wednesday, August 10, 2011


Ayzac and Krystal were released yesterday, the vomiting is under control with a slightly different feeding regimen and new meds for his tummy. So far, so good. They are on their way home now with my sister and two of her children, who had gone to meet little mitoman and visit with his mommy. :D

The kidney docs had a quick visit before she left and changed their minds, once again, Ayzac may actually be a candidate for transplant when the time comes, as long as the donor is within the family. So that's positive!

Let's pray for a long stay home this time, last time was a record at 6 weeks!

On a downside, some jerk stole his donation cans at our local Safeway and emptied them which is too bad, they were full. What kind of person steals from a baby? We use the tin money to purchase special needles for his epo shots and the vials too, since the dose has to be redone from the original vials to a smaller amount. I hope there is such a thing as Karma but there is actually such a thing as camera's and Safeway and the University nearby are both looking at their footage. Hope you get caught @#$(*&^% person!

Tuesday, August 9, 2011

Almost.........but not quite

finished with this latest admission. Azac and Krystal may get discharged today, we aren't sure yet. The vomiting really isn't under control but no one can figure it out, or why. This is usually the way little mystery mitoman operates, he's not supposed to be able to try to stand, or inch around, because he has no motility, but he does..... He's not supposed to be pink, putting on weight or have ANY energy at all, but he does....... he's not supposed to sing and coo mostly because he's so deaf, but he does almost all day long..... The vomiting is not his kidneys, it's not his gi so the docs are working on the puzzle and hoping for a breakthrough. Us too.

We have done a LOT of work over at Krystal's house, it'll be a different return for her, since her husband packed his bags and left on the 26th, the day before Ayzac turned one. The house is clean, clean, clean with NO laundry and some construction got accomplished and some repaired and one BIG surprise project was completed with the help of my sister and her daughter Emma. The house is just as she's always wanted it for her returns from stays and I'm sure she'll be thrilled. The yard needs work though...........lol

The only "new" news was about Ayzac's kidneys. We know they will eventually fail, leading to dialyses then transplant but we've learned that he actually isn't a candidate for transplant, he's just too sick. So once the kidneys start to go............. Will keep you posted......

Wednesday, July 27, 2011

The roller coaster is constantly being rebuilt:

We've had to cancel Ayzac's badass birthday bash for the 30th as we have a scheduled admission to try and regulate his lytes and figure out why he's uncontrollably vomiting. Hopefully the admission isn't too long!!! We will reschedule the bash sometime in August, maybe it won't be so rainy then anyway. In the meantime, between vomiting, he is happy and cooing and FINALLY cutting a tooth!