It's been an eventful week in the Smith household. Isaac has been REALLY tired for over a week. Last weekend when he spent the whole weekend in bed, I knew something was up. We figured it was the result of a low red cell count, and he was getting transfused on Monday. But, after his transfusion he was still tired. Usually the blood perks him up pretty quickly. I thought it was probably a result of us waiting almost 2 weeks from when we knew he was low until he actually got the blood, and maybe his body just needed extra recovery time.
So, Wednesday night rolls around and he comes upstairs to get in bed and is panting with exhaustion. We start talking about what this means, and he says "Well, I'm going for counts tomorrow, so we'll find out if it's just low red count or if it's my oxygen level and I need to go on oxygen." I burst into tears immediately - much to his surprise! Between sobs, I choke out "But Dr. Pete said if you go on oxygen you have only weeks left". I am NOT ready for "weeks left". Months? Yes. I am prepared for "he has only a few MONTHS to live"...but not weeks. Weeks means soon...weeks means dying during the school year, when I have limited flexibility financially to take off of work...weeks means less time.
So I get through my panic sobbing fit, he goes upstairs to check on his fish, and I lay in bed quietly crying our to God for help. I am at this point in my prayers that there are many times I actually cannot formulate words to pray. I just don't even know what to ask anymore.
Thursday rolls around, I head to school. I'm quite good at compartmentalizing - when I'm at school and busy, I can focus. But all day, I am out of sorts. Even one of my close teammates tells me I look sort of frazzled. After lunch, I get an email from Isaac's mom telling me he is in the ER. I didn't find out until after, that he was taken to the ER by ambulance because his oxygen level was so low (in the 70% range) that the nurses at the clinic where he was getting his blood drawn didn't want him off oxygen at all. Given my sob fest the night before, Isaac was not looking forward to telling me this.
So, we've been in the hospital since Thursday. Luckily, he was able to continue on the meds he'd been prescribed at MD Anderson. Unfortunately, he is going home on oxygen. Not sure yet if this is permanent, or if he will be able to ween off of it. He's only on 2 liters at rest, and 4 liters when active. But still...I feel like the past few days I have been working extra hard to hold it all together. It's overwhelming to think about the future...to start work on a Living Will for Isaac...to think about funerals and plans like that. I know God is with us. Sometimes I feel like He's sitting in one of the empty chairs in this hospital room. Sometimes He feels very far away - but I know He's always with us. I wouldn't make it without Him.