We've had a very crazy week this week. On Monday I asked to draw the labs instead of waiting until Tuesday so that by Friday (tomorrow) we'd have the engraftment results and be able to make some decisions. I mentioned to the nurse that when I flush Max's left side C-line, he cries. So we decided to try it out and as she pushed the heparin in, Max's left side where the line was inserted swelled up immediately. We went to get an ultrasound of Max's left line and found out that it was completely clotted and needed to be taken out. Luckily, Max can get by now with just one line since his cyclosporine is now given orally, hopefully it stays this way. So when we came back Tuesday for our IVIG, we had to be admitted into the hospital so that the surgery could happen sooner rather than later. So we stayed over night and we couldn't let Max eat from midnight just in case he would get surgery Wednesday morning. Max and I ended up not eating for 16 hrs. and we were very disappointed that it took so long to fit us in. Finally, though we got one line out and made it back to RMH by 6 pm, just in time for dinner. Of course though the blood from his removed C-line site leaked onto his dressing for his right C-line, so I had to change his dressing again later.
Today we had a pretty good day and my parents finally came to hang out with us for a couple of days and brought with them a playmat. Hopefully Max will start crawling soon. Our engraftment results came back today and they are still at 97%, and I'm still worried although maybe I shouldn't be. Tomorrow hopefully we'll be finished with our steroids, but we'll see.
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