Today is so reminiscent of the two months we spent in the NICU it's like crazy deja' vu! Being in an ICU setting, back on manual dialysis, and basically just sitting next to his bed feeling totally helpless. Stephen is in a nice room, but it's small, has no bathroom, one chair, and is so cold I'm in jeans, socks, a sweatshirt and downing hot coffee right now. We didn't stay with him last night because not only was he totally wiped out from surgery that I didn't think he would wake up and realize I wasn't there, but since he's on manual dialysis around the clock, the nurse is in here every 45 minutes to drain him and fill him. Plus, he's hypotensive again (his blood pressure is low), so they're in here checking his blood press every hour. It was so nice to actually sleep through the night, but I felt guilty as hell leaving him and then felt terrible this morning when I didn't get back to his room until 11 am. Me racing around the beltway and flying through the parking garage and hustling through the hospital up to his room was also so reminiscent of our NICU stay. I absolutely HATE not being here in the early morning when the doctors do rounds! But his nurse today is so great and waited for me to get there so I could help give him a bath which was so nice.
I was able to just catch the doctor and they're going to run some tests to check out his adrenal and thyroid glands to see if maybe they aren't working properly and causing his low blood pressures. The nurse just came in to draw his blood for the test and was able to use his new Mediport. She drew out about 3 cc's of blood and Stephen didn't even know it. It was so awesome to watch and know that we made the right decision to have the surgery; 110%!
But it looks like we're going to be here in the PICU longer than we thought. Stephen's only getting 50 ml's of dialysis fluid when he dwells and he has to be up to 100 before we can get him back on the cycler. Plus, Dr. Kim doesn't want him having anything to eat, including water, until 48 hours after surgery. Which means he hasn't eaten since 3 am yesterday morning. I don't think he's bothered by not eating, but his poor little throat is so dry and scratchy from the breathing tube yesterday and he's not allowed any water yet. His little cry is so sad! But hopefully he'll take a long nap soon and wake up feeling better and more relaxed.