Day +64: Fun with Home Care

Monday was the momentous discharge day--and I was too darn busy to properly dignify it with a posting here. I am just going to have to get comfortable with always being two steps behind in this next year--because DANG, this home care regimen is pretty much a full time job!

But, I get ahead of myself.

I was the one who got to spend the last night at the hospital--fitting as I was there for the first night as well. The little stinker must have heard me say to Jeff, as he was leaving for the night, that it would no doubt be a much better night than the first sleepless one.

It was, but just barely.

Zoe decided that 1am was a perfect time for playing and jabbering. The lovely nurse offered to stroll her around the unit--and had her out for 2 hours before Z tired of socializing with the night nurses and showed signs of wanting to nod off again. Then she was up every hour from then, and I was reminded of the days when she was a newborn.

Monday was marked by a flurry of activity aimed towards getting us out of the hospital at a decent time. And, even though everything went very smoothly, we didn't get out of there until 2:30pm.

The home care regimen has been a shock to the system in terms of how much work it involves. Zoe needs medications administered at four different times a day, the earliest dose coming at 8am, the latest being given at midnight. Makes for figuring out an adequate sleeping schedule rather challenging.

We hook her up to IV fluids every night (nerve wracking in that we are accessing her central line and therefore increasing her risk of infection) and have to maintain and administer feeds through a pump that pushes formula through her NG tube at a set rate. Feeds have to be turned off 30 prior to administering meds and then turned on again 30 minutes after meds (admittedly we don't wait 30 minutes after the midnight feeding).

Also, we have to flush her central line once a day and change the dressing on the central line once a week (which is a big improvement from when people had to change the dressing daily). In a couple weeks we will have to start back up with the twice daily blood thinner injections to make certain she doesn't clot around her central line.

Twice a week Zoe needs to go to clinic appointments at the SCCA for a few hours worth of blood draws, check ups, and consultations with the attending doctor, the nutritionist and the PA.

All we know is that between work, home chores, baby and baby's medical schedule we are seriously running most of the day--and not sleeping enough at night. They tell us this will get better with time as her medical needs start to taper, but that it IS a seriously overwhelming experience for all parents who leave the hospital with their newly transplanted kid.

Here are some pics of all of her paraphernalia:

From top to bottom: gloves and alcohol wipes, medications, central line flushing supplies, dressing change supplies, tubing, IV pump

In the refrigerator: IV bags, meds

Supplies for the blood thinner injections that we will have to start doing again twice a day in a couple weeks (once her diaper rash heals)

Supplies in bedroom

Zoe in bed hooked up to her IV pump and feed pump (both in the black and red bag at the upper right hand corner of the picture)

It's quite a lot--but it still beats living at the hospital where all the stuff was done for us (but the worrying). Well, off to bed, perchance to sleep (but no guarantees)...