Morning update

12 Mar Morning update

• Keegan got some much needed sleep overnight after we aggressively treated his fever.  By 6am, it seemed to have broken.  That’s a big step forward in his comfort levels for sure. 
• He is bleeding from his stomach or upper GI tract.  It’s not wholly unexpected, but the volume is a little unnerving.  He has filled up a bile bag already this morning with it.  At this point, we believe it is irritation related and not a bigger bleed.  They’ve started him on some new drugs to help “coat” his tummy to reduce the bleeding.  We are watching his blood counts even more closely and will intervene if needed, especially since his platelets are dropping consistently.
• His neutropenia is worsening quickly.  We are starting him back on TPN today, so hopefully, some nutrition will help his bone marrow start to put up a fight.  If not, we can restart the bone marrow stimulant he was on before.
• The head of the GI department is the attending this weekend, which was very helpful.  He doesn’t get excited easily, but he takes Keegan’s unique history quite seriously.  He told us this morning that he is ready to get “creative” with treatment if necessary.  He also said that an otherwise healthy kid hospitalized with rotavirus was generally looking at 5-7 days inpatient; a transplant kid longer than that, and “who knows” with Keegan.  Yippee.
• His albumin is low and dropping, contributing to his puffiness and “third-spacing”.  Until we can pull that fluid back into his cells, his kidney can’t clear it anyway.  Tomorrow we may need to replace some of that albumin to help him along.
• He is still on broad-spectrum antibiotics while we wait for his neutropenia to resolve and until we are sure there is no blood infection the rotavirus is masking.
• We did an echo of his heart this morning, which showed his function and pressures are fine.  There was a blip of an area where the muscle might not be getting enough flow.  We are triple-checking it against old echos to see if it is new or not.  If it is, we will simply follow up later in the week.  For now, we are ecstatic as always that his heart remains strong.

Enough info for you yet?  It’s as much for us to document his history as it is to update our family and friends, so I apologize if there’s a bit more jargon than is necessary for most.  The good news is he is stable and has a bit more energy today.  He really was talking to Curious George this morning and sat up a few times on his own.  He has interacted more with the medical staff also, which is always a relief to see.  I will probably post another update tonight with any additional information we find out.  There are some labs we are certainly waiting on the rest of the day. 

Thank you for the millionth time for your prayers and support.  I really don’t know how we would do this every day without y’all.