Overload and Anticipations

Yesterday felt like brain overload. The home health nurse came in the afternoon bearing 2 very large cardboard boxes filled with syringes, needles, alcohol pads, tubing, caps, nutrition bags, lipid bags, vitamin vials, and lots of other various medical supplies. Another box contained 2 I.V. pumps and a backpack. My bedroom is turning into a mini pharmacy!

The nurse spent an hour or so going over everything I need to do to administer William's I.V. nutrition each night. It is fairly simple and straightforward, but I'm not yet to the point of doing it without constantly double checking myself. Needless to say, it takes me considerable time to get it all done and I have to make a daily chart to keep track of what time I give each medicine, must remove things from the refrigerator, give shots, start preparing fluids, administer numbing creams.... I'm tired just thinking about it. Tonight I managed to use 13 alcohol pads for all the various sterilizing of caps and syringes and shot sites. And all that while trying to make sure William is constantly eating and drinking.

Last night I slept through my 1 AM alarm again to give William his Zofran (for nausea). I woke up at 4 AM and gave it to him. He woke at 7 AM and said he didn't feel good and gave me enough time to reach over him and grab the pink bucket. Oh, how I love the pink bucket. I got up and gave him his other nausea medication for added relief and then started packing our suitcase again for our clinic visit this morning. His counts were low, but fine and no transfusions needed yet.

I hate living like William may be readmitted to the hospital at any moment. I am amazed William has not been readmitted to the hospital again this week with a fever, but am counting the blessing he hasn't. We head back to the hospital tomorrow morning for another CBC (blood count) and then wait anxiously to hear back from UCSF. It's funny how much better it feels to check into the hospital when it is planned.

I can't wait until Tuesday. By Tuesday, the harvest will hopefully have happened, William and I will be back home, Ryan and the boys will all be back too and we will all finally be together as a family for the first time in 6 weeks. It may be crazy and loud---correction, it WILL be crazy and loud---but also wonderful and our house will feel more like home.