Knee trouble continued (day +933)

I thought Clark would be discharged from the hospital after his blood transfusion (and a little sleep) on Saturday morning, but the doctors had other plans. Clark’s hemoglobin was dropping faster than they felt comfortable with, so they wanted to do some extra tests. They drew blood to check for infection and other abnormalities. He gave a stool sample and a urine sample; they found microscopic amounts of blood in his stool, but his urine results came back entirely normal. They also gave Clark another ultrasound to check all his abdominal organs, particularly his spleen and liver. His spleen was slightly enlarged (possibly the reason for his drop in platelets), but it wasn’t large enough to be of concern. Everything else looked normal. Some additional blood and stool test results would take a few days to come back.

All in all, the day was quite boring and we still didn’t know why Clark was losing blood. 

From what I understand, there are two possible reasons for Clark’s blood loss. One possible reason is because of Clark’s bone marrow. Maybe it’s not producing enough blood; could this be Aplasitic Anemia again? Or could it maybe be a blood cancer, such as leukemia? Or is it something like myelofibrosis? The other possible reason is that Clark is losing blood. This can happen in his stool, his urine, or a hemorrhage. We needed to find out whether enough blood is being created, if it’s being destroyed, or if he’s losing it (through his GI tract).

We had the choice to go home or to wait one more day to see the GI specialist who would be doing her rounds the following morning. We decided to stick around, because the soonest GI appointment Clark could get was 3 weeks away. We needed some answers.

The rest of the day was filled with watching movies, colouring, and looking out the window to count cars and buses as they drove by.

Sunday finally rolled around, and we spoke with the GI doctor. Her opinion was that Clark has a GI bleed… somewhere. It could be a fissure or polyp, which are fairly easy to fix, or it could be something more complicated — maybe a vessel that is leaking. The possibilities sound endless, and I am still trying to understand them. The doctor was playing this off as something typical for a 4-year-old, with an easy fix, but we know Clark isn’t typical. So far, there haven’t been any easy fixes along his journey. We agreed that Clark would need an endoscopy and colonoscopy to check his GI tract for any bleeding. We will have to schedule this procedure for Clark. 

In the meantime, she wanted an abdominal X-ray to check for constipation. Apparently, this is a “normal” reason for a 4-year-old to have blood in his stool. However, since Clark has no symptoms of constipation and X-rays expose Clark to unnecessary radiation, Patrick and I vetoed that option. Another idea was to give Clark a Meckel’s scan. This would check his large bowel for any abnormalities, such as obvious bleeding or inflammation. The Meckel’s scan uses a radioactive dye; we also vetoed this option. The endoscopy and colonoscopy would give the doctors a better visual without the radiation, so we decided to wait for that. As for immediately, we could finally go home. 

Our short-term plan is to schedule Clark’s procedures and have weekly blood tests to watch his hemoglobin level. Clark’s hematologist thinks that bi-monthly CBCs should be sufficient. I hope he’s right. However, since I have the lab orders, I’m planning to take Clark weekly for his CBCs until results prove that twice a month is enough.

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