Tuesday, November 10, 2015

Finally!!!

Finally, we have a care plan!
Finally, for the first time in three weeks, I feel supported by someone with a medical degree that didn't come from WebMD.



This morning, we met with our PA provider Andy B.  He works in the tiniest town but I really like him.  He is one of the few that hangs in there with us and actually communicates.  I really appreciate it when he tells me he has no clue what to do.  At least he is honest and humble and then we can bounce ideas off each other, I share my research, he adds his knowledge and we actually get somewhere.

Andy made contact with infectious disease docs in Idaho Falls and we will be visiting with them.  They are the experts in these food borne toxins.  He is also conferencing with a new Hematology group in a city a little over an hour from here and if they accept us, we will have our new Oncologists on board.  So, I felt hopeful after leaving Andy this morning.

Then, I  finally heard from our GI doc and that was a relief too!  He was pretty much speechless.  He said that he has never treated a patient with simultaneous cases of Salmonella, C-Diff and Cytomegalovirus.  He said, "You guys are pretty special!"  I didn't exactly find comfort in anything he said but I appreciate the education.

He said that because of Spencer's poor immune system, it is likely that the Salmonella toxins have already destroyed the absorptive lining of his gut and he will probably not make a full recovery because he was already so sick when the bacteria hit.  Here is where it gets complicated.   The telomeres protect the chromosomes in his gut lining from being damaged as they continually create new cells.  Spencer has such damaged and short telomeres that his gut lining was suffering to start with.  Now, we just added a toxic bacteria and the damage has now tripled.   It's also quite possible that Spencer will now be a chronic carrier of Salmonella because of his bone marrow failure. I have no idea what this means and frankly, I didn't want to go there today.  It's been a hard enough day!

I asked him about tube feedings or vein feedings for Spencer who looks like an encampment victim, and he said there is no way he is going to break through any artery with a central line, with him in such a fragile state.  In 6 weeks when, hopefully, the C-diff is treated, we will re-test and try to get a better understanding and picture of what is happening. This will mean Christmas in Boise...at a hospital.

I am feeling very concerned.  One thing I have had a very hard time with since Saturday is food.  I can hardly step foot into the grocery store.  Everything I look at is crawling with bacteria.  It kind of freaks me out.  I've mostly been feeding the kids carbs...cereal and bread. (I know, don't judge me!) Someone brought soup over last night and that was good but it took all I had to not think about how even food, can make my kids sick.  As we have found out!  Dr. Thompson, our GI in Boise said I need to be feeding him very small, regular portions of just protein, like "eggs and bacon".  Salmonella destroys the parts of the gut that absorb carbs so I have actually been making things worse for Spencer.  Ahhh....I can't seem to win.

But...the thought of cracking an egg, the very possible carrier of the bacteria we are fighting is going to take an act of God. Protein is my nemesis right now...and water...and swimming pools...and restaurants, and breathing...and all food really.......Chlorine bleach is my consolation...if only we could drink it!

I'm thinking the trial here is not really what it may seem...or maybe it is.  Maybe there are layers upon layers of adversity and each day, we peel back another really hard thing we didn't know was there.

For now, I guess we just do the needful thing.  I really need to start making some money and try to focus on work instead of bacteria.  We are also really trying to stay busy as a family, doing what service we can.  Of course, we don't want to freak people out with our germs but we can just sit here feeling sorry for ourselves either.  So far, it's working.



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2 comments:

  1. Kathy,

    I hope he can start handling bits of protein, a little at a time. Remember eggs that are cooked thoroughly shouldn't have any Salmonella in them, only raw or undercooked. He is looking like an encampment victim like you said. Keep your head up!

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  2. I have backyard chicken eggs and bacon without nitrates...much better for his gut. Text me and I will bring them over!

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