Tuesday, January 4, 2011

Harumph and a foot stomp.

I haven't posted because all I could think to say was one big BLECH! First let me say Tomas does not have a cold or the croup or an upper respiratory infection. Which is fantastic becuase any one of those could do some serious damage right now.
His latest immune panel came back unchanged, which means his immune system is still about half what it should be. His ANC has been steadily dropping, down to 473 on Thursday, with labs again today. He is anemic and his labs are starting to show that he is depleting the iron stores in his bone marrow. He is fatigued, pale, and mostly just wants to be held. But does anyone know why? Of course not. He gets almost double the RDA of iron in his diet so he should be able to pull it, but can't. The same thing has been going on with his calcium and protein, his diet is rich in these but he is borderline low there as well. Ugh.
I also finally got a hold of his GI nurse, but the metabolic labs are lost. They were drawn on 12/7 and were sent to another lab for the test. They are supposed to be sent back to the original lab who then forwards on to the doctor, but the doctor doesn't have them. The nurse is going to call tomorrow to find out what happened. Hopefully, the blood made it to processesing and it is just a matter or re-sending results.Ugh.
I have also gone round and round with Olivia's cardiology office to get her scheduled for the ablation, Call this number, no call this number, no it is supposed to be scheduled at the office. Seriously, the are one of the top hospitals for heart issues in the county, you'd think they'd have this part worked out by now. Ugh.
Tomas has a cardiology appointment this morning to check on that right pulmonary artery, and maybe that doctor can shed some light on his labored breathing, although I suspect it is from the anemia.
For the last 8 weeks I have been watching him slide downhill; less stamina, lazy sitting, less and less scooting and more and more whining. It has been difficult because there was nothing for doctors to put their fingers on. Hopefully, now with the labs also showing a progressive decline they can figure something out. Preferably soon! 


  1. Crazy. Good luck at cardiology.

  2. Double blech here on your behalf.Sending prayers for answers.for both your babies.