Sunday 10 February 2013

Untitled

It must be time that time again. Time for a brief update. And brief it will be.

Adam is not doing so great since returning from Grand Rapids. Three repeat urine samples (I guess one of the 'missing' ones turned up) all tested positive for coliform infection (e-coli), and so Adam was started on intravenous antibiotic to treat it. He then began having issues with his bottom again, and it's subsequently transpired that he may well have a second abscess forming next to his anus; on the opposite side from the one that burst on Christmas Day, and which has now all but healed up. Considering what he went through with the last one I am quite surprised that he hasn't been at all traumatised by the thought of a repeat performance. I know I would be. He's now on another IV and third oral antibiotic for the suspected abscess (it's not well-enough formed yet for us to know that's definitely what it is), however antibiotics as we know from previous experience are seldom effective in dealing with such things. His blood counts are very low, and neutrophils are an unhealthy zero, making him very vulnerable and extremely susceptible to bacterial infection. He's been on G-CSF since Tuesday but it's had absolutely no effect. With all the IVs he's on at present he's having to be hooked up for 2-3 hours daily; yesterday and today that meant being up at the hospital, but whenever possible our wonderful community team are coming out to administer his meds. Eating continues to be a major problem and Adam has lost further weight. Reluctantly we have decided it is necessary for him to have a feeding tube so that we can support him nutritionally. The thought of a second impending abscess with all that will bring finally tipped the scales. He's not happy about the prospect, not happy at all, but he understands. He's had so many false starts over the last four months, a few good days when things looked to be on the up, followed by a few tough weeks when any progress he had made is wiped out … and more besides.

6 comments:

  1. My heart breaks for your sweet family. Hang in there.

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  2. I am so sorry that you and your family have to
    Endure such pain! I pray that god will
    Heal your little man and free
    Him of all pain and suffering!

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  3. Poor little man. I hope that in having the feeding tube he will feel a little stronger in himself. Thinking of you all.

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  4. The suffering is relentless, and watching helplessly as your child endures this is beyond a parents worst nightmare. We lost our 10 yr old daughter to neuroblastoma last May after a 3.5 year battle, and countless different treatments. So I can relate to what you and your family are going through.
    We had a simple agreement as her parents: we would continue to treat her as long as the number of good days outnumbered the bad days. I so dreaded having to make a final decision, but in the end it more or less made itself. We came to a point where neither of us could remember the last good day - there had been so many bad days.
    I'm not a great prayer person (and don't think God really listened to mine) but I hope and pray for Adam, you and your family that you all have the strength and where with all to keep going - I can only imagine that the tank must seem very empty these days. Take care x

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