It’s day 28 of induction 2 and we busted Noah out of the hospital for a couple weeks. This all went down with a lot less drama than last time around, but did come together pretty quickly.
All in all, it went pretty well this round. Noah was originally scheduled for the bone marrow test and spinal tap tomorrow (day 29). They want at least an ANC of 300 for that test due to a heightened risk of infection. As of Friday his ANC was still zero so the appointment got postponed.
Even so, as the ANC stuck at zero, we could see other counts coming up. Hemoglobin had dipped to 7.5 five days ago and looked like a transfusion might be necessary, but had bumped up to 8.6 so that was going in the right direction. Platelets increased markedly every day and were all the way at the top of the “typical” range at 463 (150-450). Noah said he wishes he could trade some platelets for hemoglobin or neutrophils.
As mentioned last post, we weren’t too concerned about the ANC coming back. It was slow first time around and we knew it was just a matter of time. The last couple days were that time as it jumped to 75 Saturday, 182 yesterday, and 312 today. This was good enough to go home.
In hindsight, it would also have been good enough to do the bone marrow test tomorrow. As it is, that test has been pushed all the way to next round’s return date of Monday, December 8th. I kind of would have liked to get that over with and see another day of ANC returns, but it’s pretty clear they’re coming up.
Already yesterday, we were about 99% sure he’d be going home today due to the bump in ANC. Early on we kept hearing that an ANC of 500 was typical for going home, but both rounds so far he’s been pretty far below that. We’re finding there’s not a lot of hard and fast rules though and I’ve seen enough to think he’s good to come home too. His other counts are in good shape, he’s eating well, and energy is high.
Really the only thing that gave me pause was that we’ve been having some trouble with one of his port lines. Noah’s port consists of two lines (one white, one red) that are used for IV fluids, transfusions, blood samples, chemo delivery, etc. Those lines get flushed with saline solution each time there is a new IV that will be hooked up to keep the lines clear.
Part of that process is to push a bit of saline in and then draw back to check that blood comes back through the line. This ensures that the other end of the line is in position and in working order. Sometimes getting this blood return can be finicky and that’s the case with Noah’s white line; it tends to be sluggish. It’s likely somewhat “positional” in that the end of that line is located in a way where the blood just doesn’t come back as easily. This is apparently not uncommon to have one line that is more problematic than the other.
Lines can also get buildup of clotted blood. In addition to the saline flushes, Noah also often gets a heparin flush. Heparin is an anticoagulant to keep clots from forming in the first place. Usually with a little finagling we can get a blood return by adjusting position (e.g. Noah holding his breath, putting his right arm up, turning on his side, etc.)
Well, we did all the tricks last night and just couldn’t seem to get blood return. The natural step when you can’t get blood return is to order and push in a TPA. This is medication that can break down any sort of blood that is clotted in the line. That goes into the line and sits for 30 minutes and then you try to get blood return. If that doesn’t work, you wait another 30 minutes and try again. We waited twice last night and it finally worked. That’s the second time he’s gotten a TPA in these first rounds and it probably won’t be the last.
The good thing is that, while we do need to change caps and flush the lines with saline and heparin at home, we do not have to check for blood return. Also, assuming we don’t get the dressing wet in the shower, we don’t have to change that either and we reallllly don’t want to.
Port dressing prep for the shower was stressful last time at home, but I did that prep every day he was in the hospital this round, and pretty well have that on lock now. In this second round we really started trying to handle some of the work the nurses typically do. There’s no reason for nurses to be dumping/tracking urine, preparing dressing for the shower, having to ask Noah about food/fluid intake, etc. We still rely on the nurses heavily and they handle a lot, but taking over some of that presumably makes their job easier and makes us less helpless.
The big concern during this time at home is really watching for fevers, making sure he’s getting enough food/fluid, exercise, sleep, meds, and line maintenance.
As for visitors and such, we’re going to take a similar approach to last time. Yes, he’s home and doing well, but an ANC over 1,500 is typical. He’s just at 300 at the moment so it’s not like his immune system is ready for a lot. We’ve got family coming into town and, while it would be amazing to get everyone together, everyone is aware that’s probably not advisable at the moment. Heck, during normal times don’t most people that attend a family Thanksgiving get sick? Everyone give thanks for the turkey and the side of cough. :) We’ll be home, but we’ll be FaceTiming, probably taking part in the family Euchre tournament, and celebrating being home and amongst loved ones. This has been a tough year, but we’ve also never had as much to be thankful for in terms of friends and family as we have in the last few months.
So, with that, we love you all and over and out!