Keeping busy

It’s so good to be home!
 
What a relief to be out of the hospital! I am GREATLY appreciating my comfy bed, and having access to a kitchen full of food whenever I want, and finally getting some peace and QUIET away from all the noises and interruptions and poking and prodding of the hospital! And, of course, getting to be with my amazing partner, who deals with so much and takes such wonderful care of me! Home is good!
 
That doesn’t exactly mean I’m living my best life here. I still have the wound vac, which is uncomfortable at best and sometimes pretty painful, particularly during dressing changes. My skin can be sensitive to adhesives, and less than 24 hours after the wound vac was put on I actually got a welt from the first dressing they used. The welt is slowly healing, and we’re using a different dressing now that I’m less sensitive to, but my skin still isn’t loving it and I’m often itchy.  Then there’s the dressing changes, during which they remove and replace the sponge packing the wound. This happens at least 3 times a week, and is painful every time. Most of the time I can get by without taking anything stronger than Tylenol, but for dressing changes I take a small dose of oxycodone to make things more comfortable. There’s still no word on how long I’ll have the wound vac, but it will be for at least another week, which is when I have an appointment with the plastic surgeon to assess my progress and see if they’re ready to stitch me up. So far everyone has said that the wound is healing nicely, so I’m hopeful that I won’t need the wound vac much longer!
 
Aside from all that, I’m also on a pretty rigorous infusion schedule. I run my IV antibiotics 3 times a day at 6am, 2pm, and 10pm, and each infusion runs for about 3 hours. To make it more complicated, for some reason the pharmacy isn’t able to fit the full dose into one bag, so halfway through each infusion I need to switch to a 2^nd bag. All that doesn’t exactly leave a lot of time for sleeping. I’m definitely getting much better quality sleep at home than I was in the hospital, but both Katherine and I are still pretty exhausted. Right now they haven’t set an end date for the antibiotic, and are waiting to see how the wound heals. I do have an appointment with Infectious Disease at the end of next week though, so hopefully we’ll have a clearer plan then.
 
I’ve also been kept busy with nursing visits! I have 2 home care agencies following me, one to take care of my infusions and PICC line, and one to take care of the wound vac. I had an infusion appointment the day I came home, and then a wound vac appointment over the weekend. And today was especially busy, because I had both! The infusion nurse came in the morning to draw my weekly labs and change the dressing on my PICC line, and the wound care nurse came in the afternoon to change the dressing on my wound vac. That will be the schedule every Monday for as long as I have both the IVs and the wound vac, and it’s a lot! In addition to that I also have wound vac appointments on Wednesdays and Fridays. Being sick is a lot of work!
 
And because we didn’t have enough going on, Katherine and I came down with colds over the weekend. Katherine is feeling pretty miserable, but thankfully my symptoms aren’t too bad so far. But my transplant team doesn’t mess around when it comes to infections, so tomorrow we need to shlep back into Philly so they can take a viral swab and try to identify what I’ve caught. Planning anything is difficult with my infusion schedule, plus I have to lug the wound vac with me wherever I go, so I’m not exactly looking forward to leaving the house. At least it shouldn’t take long.
 
So that’s the story around here. My days are jam packed with medical shenanigans, and I am TIRED. But I am very, very glad to be dealing with all this from the comfort of my own home!