Tuesday, June 29

Saturday & Sunday, June 26 & 27
I spent the weekend trying to get the house back in order, as well as going through all of the stuff we had at the hospital, either putting it away, or re-organizing it and re-packing it so that it's ready to go back to the hospital the next time. I will continue living out of my suitcase so that all of my things and Collin's are ready at a moment's notice. I continued to work on getting down a routine for Collin's care. Nothing was easy, because Collin would hardly let me out of his sight, and every few hours I'd have to stop and give him medication. Saturday morning another visiting nurse came to draw labwork and supervise a dressing change. By Saturday afternoon I realized we had not received the case of enteral nutrition that was supposed to have been overnighted to us, so we had to make a bunch of phone calls to get that resolved so we would have formula to feed Collin through his feeding tube over the weekend. Sunday morning, I went to give Collin his morning meds. The first one went through the tube without a problem, but the next one exploded back at me. I called the nurses at the hospital who had me try a few things to unclog Collin's feeding tube, but nothing worked. So, I had to decide whether I wanted to try replacing Collin's tube myself, or if I wanted to go to the ER to have someone else do it. I decided I would try, and despite a minor snag that one of our nurses talked me through on the phone, I managed to get the tube in and functioning! Who knew my lesson last Thursday at the hospital would come in handy so soon!

Monday, June 28
We had our first outpatient clinic appointment first thing this morning. It went well; the clinic is behind the hospital, so it's close to home, it was organized so things ran smoothly, and the staff are very friendly. We saw Collin's oncologist, and Collin recognized her right away. The plan is for him to start his next round of chemo this Friday. We will go back to the clinic in the morning, and as long as he's still doing fine, they will order his next dose of Vincristine from the pharmacy, and we'll have to wait for about an hour for the order to be filled. Then they will administer the drug there in the clinic; the administration of Vincristine only takes a minute. Then they will give me the prescriptions for the other oral chemo drugs that we will give at home over the next few weeks. Collin will continue to be seen at the clinic at least twice a week, and at any sign of a fever, he'll be readmitted to the hospital. Then around day eleven of this round of chemo, he'll be readmitted to the hospital for a few days so his next dose of Cytoxan can be given. Then we should be able to come home for a little while longer, until the next round of chemo.

We also have some therapy appointments this week and next week, scheduled in between clinic visits. All of these appointments, along with all of Collin's care at home, will keep us pretty busy!

Tuesday, June 29
Today we had no appointments to get to, and no one scheduled to come to the house. It was Bill's first day of working at his office since we got home from the hospital, so it was just me, Collin and Neya at home. I continued trying to get things crossed off my To Do list, and I feel like I'm in pretty good shape as far as that goes now. I had to call the home health care agency about getting some more supplies; in the hospital when they were setting up the feeding pump each day, they would cut the tubing from one bag and use it to make an extension on the bag they would use for Collin's formula so that we'd have more slack to get around with; otherwise he'd have to be within about 2-3 feet from the IV pole. So I was doing this at home too to make life easier, but that meant I was going through the supply of bags they sent twice as fast as they expected. They need a doctor's order for the bags or extension kits, so they worked on getting that. They called to tell me they were sending four extension kits because that's all the insurance would cover per month. So, first I will have to figure out whether they are reusable; I'll be surprised if they are because the feeding bags are not. Then I am going to make some calls this week to find out if the insurance company will cover more bags or extension tubing, and to explain how difficult it is for a child to have to be tethered to a pole for twelve hours with only 2-3 feet of slack. Even if it's used only at night, 2-3 feet doesn't give Collin any room to move around in his sleep without pulling the tube too tightly, and if it's pulled that tightly around his neck (as I found it once in the hospital in the middle of the night) it will choke him. If they won't cover any extra, I think I'll find out how much they cost and have the agency send more, and we'll pay for them ourselves. It will totally be worth the convenience.