Miss G in Hospital

Gwendolyn is doing okay but we are with her at Cottage Hospital. Yesterday she was admitted to the PICU for an emergency blood transfusion. You may recall this exact thing happened last year -- right around this time. Last year it was pretty scary because she got so low so fast but once she received what we called her "Super Girl" blood she bounced back to her bubbly self very fast and we were home in a jiffy. This time the doctors are a bit more cautious about letting us leave right away because now that this is the second occurrence the big question is WHY.

Last year it seemed she had a bad reaction to the antibiotic Septra. Anemia is a rare reaction but it does happen and with the timing of her blood loss it made sense. This time she is not on any medications and the only new thing she has had were her vaccinations last week. It is possible it was a reaction to them but she's had most of them before with no issue. Over the weekend her heart rate (which is normally very predictable) steadily increased each day and by Sunday it was sky high. She also starting having black stool. Her oxygen was 100% but we could tell she was uncomfortable and her skin was pale so we had a pretty good idea it was anemia. We took her in to have her hemoglobin checked first thing Monday morning and sure enough it was at 7, down from 13.8 just a few days earlier. What is pretty clear is she had some sort of internal bleeding that caused a sudden drop. But why?

The first thing they did was give her a unit of blood to get her stabilized. Her heart rate immediately went back to normal and she pinked up a lot. The GI doctors tried to put a scope in her g-tube site so they could look for any ulcers, abrasions, abnormalities, etc. Unfortunately, they didn't have a scope small enough to fit through her g-tube hole. They talked about putting a scope down her throat but Bill and I decided against this as it would require intubation and considering this isn't a lung issue the risk of intubation does not seem worth it. There is a lot of discussion about theories of what is going on, options, possible risks, etc. Given all that Gwendolyn faces, Bill and I are always very measured about procedures on Gwendolyn. And because she bounced back so well last time and it has been a full year since the last issue, as long as she doesn't start bleeding regularly it doesn't seem worth the risks of investigating too much further. BUT...the doctors are being very cautious because they are afraid she may start bleeding again. And no one likes the idea that we don't know why this is happening. They plan to coat her belly with a medicine today to see how she does with that. And then we will start slowly feeding her through her g-tube again if all goes well.

So it looks like we will be here for a few more days. We are pretty ready to hit the road -- worried Gwendolyn may pick up something far riskier to her fragile state right now. But we also understand the plan and it seems reasonable. Gwendolyn is very ready to go home. They had to put a central line in and so she is pretty sore. Our normally social butterfly is not trusting anyone right now and needs constant reassurance that we are right there. The Cottage Hospital staff are, as usual, understanding and really supportive. And, on the plus side, "Diamond" came to visit today and he made Gwendolyn feel a lot better right away.

Thank you all for your concern, prayers, and love. We really appreciate all the kind emails, texts, and comments and they definitely help boost our spirits.  

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