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.

Saturday, February 18, 2012

Then and Now

Well hello everyone!

Okay, I know it has been awhile since I have written a post. But, before that dirty look leaves your face stuck like that, I do promise to make this post a good one! Let me start by saying I don't know where to start. I could try to re-cap everything that has happened since August, or before August, but I honestly just don't remember much. Its a good thing my mom had been posting updates for me or this blog would be pretty uneventful. I did however ask her to stop posting. I was feeling like I should be on top of it and wanted to put my point of view back into whats being written. But then I got busy, distracted, some days lazy and just plain forgetful and TA DA! no post since August.
Okay. Now that we are all friends again, hopefully, I will get to the big question. "How is Ayzac!?".

Sometime long ago (forget me trying to remember exactly when) Ayzac got an infection in his line. A staff infection to be exact. He got very sick, mainly just vomiting, but we noticed right away his kidneys were getting less and less tolerant of dehydrating. He was treated with Antibiotics through the line for two weeks. Roughly another week to monitor him and make sure he had negative cultures and off we went back home. I think we were home a few days to a week and he started vomiting again. This time with a fever and I just knew he had a line infection again. Off we went air-lifted to BCCH as usual and again he was treated for postitive staff infection. Another month in hospital. Another month away from Kazzdon and Taija. This same senario played out not once more but TWO more times. 4 line infections in total before the antibiotics just weren't cutting it. Surgery, along with our biochemical docs and infectious diseases ALL agreed the infected line needed to be removed. After a near four months in hospital just for these nasty, and might I add PREVENTABLE infections, he finally had surgery on December 11th to remove his line. 4 days and 5 IV's (Yes, 5. IV's are FUN to pull on!) later, he got a new VAD on his left side and they also swapped his PEG tube for a neat little MIC-KEY button. He healed up and we got released just in time for Christmas once again. I think it was the 20th.
Christmas went really well and the kids were all spoiled and had a great time! I was grateful just to be home. Ayzac started throwing up again through the holidays. Not a ton but enough to go to the local hospital on Christmas eve and boxing day for bloodwork and saline boluses.

On the 27th of December we were air ambulanced yet again to BCCH. This time Ayzac suddenly started throwing up a ton. Litterally overnight he went from fine with a few pukes a day to incredibly sick. Puking his face off, dehydrating far too quickly and having nasty, foul, all the way up his back, make you gag, liquid poops. Green ones. Just so you can get a really clear picture :) His Creatinine and Urea (measuring kidney function) went to a new all time high. Stool cultures revealed he was positive for a common bacteria called c-diff. Most children, especially healthy ones, don't get ill or receive any treatment for c-diff. It basically makes you have lots of loose smelly stools and goes away on its own. However severe cases need treated with antibiotics. The funny thing is C-Difficile accumulates in the gut usually when the person has been on a lot of antiobiotics, because bad and good bacteria get stripped away and the bug can grow. So it made sense that he would get it after spending almost 4 months on antibiotics! Ayzac, being Ayzac, took a mild case and added some pizzaz with vomiting and dehydration. I found out close to discharge, about two weeks later, that a GFR test revealed Ayzac's kidney function at about 30%. We had originally been told he was sitting around 50% function which was still great. But this new news was not so good. His kidneys just could not tolerate his chronic dehydration and decided to give us the finger. Ayzacs renal doctors are starting to step up in his care at this point. Soon they will be ahead of our metabolic doctors. We went home, finally, again. With some new medications but NO puking!! We had an awesome first week at home. It was the first week since Ayzac had been born that he didnt vomit at all. Not a drop. I was thinking Ondansetron was my best friend at this point. But just as we got unpacked and comfortable Ayzac started puking again. His poop changed quickly and I knew right away the C-Diff was back. After what happened with his kidneys last time we didn't hesitate. We came back to BCCH right away. He indeed tested positive for C-Diff a second time. This time he was treated with antibiotics for two weeks and we were admitted for almost three weeks. We actually got discharged and within 48 hours were re-admitted before we even made it home. A few days later we got to leave. That was last Saturday. This last Wednesday he was back in for vomiting and getting bolused at our local hospital. Yesterday we were air lifted again to children's. 4 days at home. 4. This is the part where I ask your help in finding my sanity.....