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.

Monday, November 1, 2010

What now?

So the doc's told me they are trying to POSSIBLY get us discharged by the end of this week or early next week. Now before you run out and buy welcome home banners, cake and balloons you should know that I'm actually not excited about this. In fact it scares the crap out of me. I guess some part of me was under some delusion that we would go home when Ayzac would have perfect blood levels, be fat and pink and I really wouldn't have to worry about much till we come back. So not the case.

Just today Ayzac's potassium shot up to 6.8 (normal: 3.5-5.5), his hemoglobin dropped to 74 (95-135), his PH is 7.0 (7.35-7.45) and his lactate shot to 17.6 (0.5-2.2) among other things that went out of wack for no apparent reason. Some of these results can cause very serious problems if they are even 0.05 out of range. So today he got put on a bolus dose of IV fluids and had an ecg and a Kayexelate invasion where the sun doesn't shine.

So here's the scary part. Doctor's have changed NOTHING in the last few days. So you then ask "Why is his system so unstable when they have him on treatments?" Well I'm glad you asked. The doctors don't have a  CLUE whats causing these symptoms to disappear and reappear with no warning signs. They said, and I quote "We are naive to think we are the ones keeping him stable simply by treating things for which we don't know the underlying cause."

So basically it boils down to this. He has a handful of life threatening symptoms which can also cause all sorts of organ dysfunction or failure (not to mention deafness is already crossed off the list) and there is nothing more that can be done for him here. Everything they are doing can be continued at home and we get to sit around and cross our fingers that he makes it long enough for some sort of answers or diagnosis. I'm sorry but I just can't get excited about that. But what other choice is there? Sit in a hospital forever or make do with what we are given. If anyone wants to help us out, now is the time. We are going to need tons of underwear and laundry soap while we sit around crapping our drawers for the next few months! And yes...we will be back here in roughly 3 months. We could be back earlier, this of course depends on several things...if he needs emergency critical care again, if his dietary needs change dramatically or if they get good test results or need to continue with different tests altogether. He may have a muscle biopsy and a lumbar puncture in his near future.

So this week I get to practice inserting the NG, run through medications again, run through the formula prep again, talk to medical distributors and cry while I watch the bank account drain when I go to buy the massive list of supplies we need.......AAAHHHHHHH!!!!! See, just crapped my pants in one post....gonna go change now.

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