Add It to the Schedule

If you want the short version of this week, here it is: Aaron came home on Friday. He still has CMV. We're giving him infusions three times a day. His blood counts continue to improve.

For those of you who like more details, here is the expanded version:

The CMV number is checked twice a week. A week ago on Thursday, it had gone down, so we thought (hoped) it would run its course quickly. But then on Monday, it had gone back up. The doctors thought Aaron would need at least another week in the hospital before they would consider sending him home.

But they changed their minds on Thursday. Part of the reason Aaron had to be hospitalized in the first place was because the anti-viral medication can be really hard on kidneys. But Aaron's kidneys had handled it really well, and so the team was willing to let him go home. Truly, the only reason he was still in the hospital was to get these infusions every eight hours, and we could just as easily give those to him at home. His virus number went back down on Thursday, so they put everything in place for him to go home on Friday. 

I knew our biggest hurdle was going to be getting the medication delivered to our home on time. We've dealt with insurance and home care many times before, and it often requires a million phone calls and pre-authorizations and approvals and then more phone calls before it actually gets set in motion. 

Mike and Aaron got home around 11:30 on Friday morning. Although Mike and the team had tried to get things set up well in advance, the time for Aaron's first infusion came and went with no medication in sight. The home health nurse showed up to help us learn how to use the pump, but we didn't have the pump yet, and a call from the pharmacy said it would be at least an hour before they would be at our house. So the nurse left.

We waited. We literally just sat around, watching the street outside our window, willing the pharmacy van to round the corner. Another nurse came. As usual, it was the nurses who were the ones who could be counted on. At this point, we at least knew that the van had been loaded and was on its way and that we were supposedly the first stop. 

When it finally arrived, the nurse jumped out of her car and walked with the pharmacist up to our house. I could hear the pharmacist apologizing profusely. By this time, the dose was three hours late. But the reason why the pharmacist was apologizing was because they'd actually forgotten to load the box with the medication. We had the pumps, the flushes, the heparins, and other supplies, but no medication. She said someone else was rushing it over.

As I already mentioned, this anti-viral medication (foscarnet) is really hard on kidneys, so a bolus of fluids has to be given directly before every infusion. This is a high volume of fluids given over a short period of time. The bolus takes an hour, and then the infusion takes another hour. 

So finally, more than four hours late, we were finally able to get the pump hooked up and the bolus running. The nurse helped us get the other pump primed and ready to go with the foscarnet, and then she left.

With so many glitches and setbacks, we should have just expected one more. When the bolus was done, Mike hooked Aaron up to the foscarnet, but the pump wouldn't start. Even though the nurse had set it up, it had somehow reverted back to its original settings, which required an ID number. Unfortunately, we didn't have this number because the pharmacy doesn't trust parents with it. But we had to have that number, and we had to have it right then.

So Mike called up the pharmacy. He is not what you would normally call a difficult customer, but he was not hanging up without that number. He explained the situation in a tone that indicated that there was no other option, and I'm honestly not sure how they decided they could make an exception, but I'm proud to say that in this case they put the patient over protocol.  I'm sure this was against the rules, and I hope no one got in trouble for it.

Aside from that super delayed dose, everything else has gone smoothly, but it is another thing in Aaron's day for us to keep track of. In addition to the schedule I laid out a couple of weeks ago, we now have:

5:00am: Start bolus

6:00am: Start foscarnet

1:00pm: Start bolus

2:00pm: Start foscarnet

9:00pm: Start bolus

10:00pm: Start foscarnet

Since he also has magnesium and micafungen that he gets every day through his central line, he is hooked up for a total of eight hours every day. 

You might remember that when Aaron had his first transplant, he had to get his central line replaced right around Day +42. At the time, I asked the doctors if we could just get it removed instead of replaced, and they couldn't believe I would even suggest such a thing. They said they would never remove the line so early in the transplant process because things happen and when they need it, they need it right then.

Back then, I didn't really get it because Aaron's central line wasn't being used for much, and it just seemed like one more hassle to flush and heparin lock it twice every day for "just in case." 

But now, I get it. Aaron is at Day +51 today, and this time around, his central line is still in high demand, and we're grateful for it. 

But having to be responsible for a full schedule of infusions is still infinitely preferable to being in the hospital. When Aaron got home, the boys all gathered around him, and they just hung out for a couple of hours. Max pulled out his clarinet (which he just started learning how to play this week) and Aaron got out his trombone, and they jammed to "Mary Had a Little Lamb," which is one of the only songs Max knows. They examined Lego sets and read through almost an entire book of riddles. Mike and I marveled that they didn't even think about screens (even though Aaron had come home with a Nintendo Switch--a generous gift from a friend). They just wanted to be together. 

But speaking of the hospital, Aaron had to be there for a total of ten days, which felt like a lot, but in many ways, it was far better than when he was there for transplant. For one, he didn't feel sick at all (except for one short bout of nausea, probably due to pentamidine). For another, because his white blood count looked good (an ANC of 2100 on Friday!), he was given free rein of the hospital. He could leave the unit and walk the hallways. He could go outside. He went into the Ronald McDonald room. And he and Mike spent an hour in the Forever Young Zone playing foosball and air hockey and other games. He's actually never had that much freedom in the hospital, so even though he's spent a big chunk of the last two years there, his experience was still fairly limited. 

When I told Ian that Aaron was coming home from the hospital, he said, "Oh! And now he'll never have to go back?" I wish I could make that promise, but we know that transplants have a way of surprising us. But even though I can't promise he'll never have to go back, he's definitely on the right track to eventually get to say goodbye forever.