A day in the life . . .

Things have been pretty calm since we brought Patrick home from the hospital this time. It takes a lot of extra work to keep up on all the new medications he needs, but otherwise life has been calm.

But – it occurs to me that I should state that our calm isn’t exactly the same as others’ calm. Let’s take today as an example. It was a pretty good day.

We got up early today. Patrick woke about hourly through the night because he’s still not used to being at home. I get up and give him a pacifier and put his blankets back on him and he goes right to sleep. I was a bit tired when the alarm went off at 6 to tell me Patrick’s vancomyacin was due. I’d forgotten to take it out of the fridge last night, so I had to run around with it tucked under my arm to get it warm while I got everything else ready.

I prepared a bottle. Disconnected Patrick’s feeding tube, replacement fluids line and ostomy drainage tube. By then he was screaming to be fed so I got him out of the crib and fed him his 1/3 tsp. of formula then rocked him back to sleep. (And me, too). At 7:30 I put him back down to check to make sure Howie was up.

He was pretty awake then, so I went ahead and got him up, changed his ostomy bag and g-tube dressing, flushed his picc line, and got him dressed.

Because we were up so early I decided that it was a good day to go shopping. It’s Howie’s birthday on Sunday so I packed a bottle to give myself extra time to shop. (Patrick eats every 3 hours, which can be a narrow window of opportunity).

I’d been in the store about half an hour when my cell phone rang. It was Patrick’s nurse confirming an appointment for her to come draw blood for labs. It was 11:30 and she wanted to come at 12:15. So I made a mad scramble to focus and finish the grocery shopping so I could get home on time.

At 12 we finally made it out of Wal-mart and I loaded Patrick and the groceries into the car, then shut off his TPN pumps so that the labs would be accurate. (Need to give the blood time to carry off what’s in the PICC line.) I hurried home and just got the groceries into the house and put away and Patrick fed when his nurse knocked on the door.

I gathered up the supplies she’d need for the tests then held him while she drew them. She asked what his last temperature had been, and since I hadn’t taken once since he woke up, she did. It read 99.5.

Any rise in temperature can be an early sign of infection so I stuck a thermometer in my pocket to do temp checks every half hour. Then I took him upstairs to change his diaper only to discover his ostomy bag had leaked. He was pretty mad, but I pulled off a quick change and took his temperature again.. Still high.

I grabbed a quick lunch and put on replacement fluids (saline solution via IV). He needed some anyway and if he runs a fever he needs extra hydration. By then he was getting quite mad and so I piled everything to work on his tubing change around me and snuggled him up in my lap to try to help him sleep.

At 2 I traded replacement fluids for IV antibiotics, and when those were done, started prepping the new day’s TPN. When I opened up the backpack around 2:30 to see what time I had left in the day’s TPN program, I noticed a bad mistake. I’d failed to turn the pumps back on after the blood draw.

Without TPN running, Patrick’s blood sugar plummets, so I hurried and got him a bottle and then gave him a couple of licks of a glucose tablet to help keep him up. I made a record fast tubing change then reprogrammed the pumps to slowly “taper up” the rate of infusion to avoid going from very low blood sugar to something too high.

Finally with TPN running again, Patrick calmed down. But his temp was still between 99 & 99.5. My next option was to try to get him to rest. So we snuggled up on the couch so he would sleep. He’d sleep as long as I was right there holding him. So, while he slept, I talked to his transplant coordinator in Seattle and then sent an e-mail to his GI here to try to get sorted out a positive blood culture that showed up in his labwork last week.

The evening was calmer. Brian worked a bit late which gave me extra time to get dinner ready.

Around 8 we started working on the bedtime routine. One of Patrick’s meds needs to be given on an empty stomach so he gets that around 8:30. Then Brian and I work together to make new formula & bottles for the night and to prime the tubing for the feeding pump that drips formula into his stomach all night. He gets one antibiotic through his g-tube right now. We have to draw it out of a vial with a syringe and then change tips to something that fits his feeding tube and flush it in there.

Then we connect his feeding tube, flush his PICC line to make sure it’s still running well, and change him into P.J.’s. Tonight he gets to sleep in a onesie to help keep his temperature down, though.

At 9, Patrick ate and then curled up and went to sleep. Because Brian was home, we stayed up watching T.V. while we gave antibiotics. He gets 3 at night, plus more replacement fluids. We have to switch medicines and flush lines at 9:30, 10:00 and 11:00 p.m.

And that is why I’m up blogging right now. His last antibiotics are just finishing up, so I need to go take them off and make sure that the unused line is “heparinized” for the night. If I’m quiet, I hope to do it without waking him and make it to bed by midnight.

It sounds like a lot, but this has actually been a mostly relaxing day.. except the part in the middle when Patrick’s TPN was off and he felt awful. Last temp was actually low… so I hope that the other high numbers were a result of the heat of the day or the fact that he’s cutting a few teeth.

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