Unfortunately, this is the first spare moment I have found since we got home on Sunday, so I'm sorry it took me so long to update you. Don't get us wrong... we are thrilled to be home! Everybody's been asking, "Isn't it wonderful to be home?!" with excitement in their voices, and I find myself hesitating a bit. Let me just give you a glimpse into the last sixty hours...
We unloaded the car on Sunday afternoon, and the bags had barely dropped to the floor when home care showed up for review and training. The nurse stayed for approximately two hours, making sure that we knew what we were doing hooking up her TPN and lipids, then Ethan took off for Clifton again to pick up a bedside commode at 9:30pm. I ran back and forth between Lily's and Becca's rooms to read books, tuck in, and assist in getting Becca to the bathroom.
While we were in the hospital last week, Becca apparently picked up a virus, which is aggravating her kidneys and bladder, causing her let out bloody urine every 15-20 minutes. We decided that trying to move her IV pole over the carpet into the bathroom each time she needed to go would not work. Thus, the need for the bedside commode. It is an ugly, unpleasant, and sometimes painful condition, but not typically dangerous (otherwise they wouldn't have let her go home). The virus is supposed to take two weeks or more to clear up.
Unfortunately, Becca (nor the rest of us) have slept well since last Tuesday, as her urge to go occurs day and night. She really has not received more than 45 minutes of uninterrupted sleep in over a week, and she is totally exhausted. Ethan and I have been taking turns sleeping with her to assist her at night, and I have been working, too, so we are pretty much zombies.
Monday at 1:30, Ethan and Becca had an appointment in the clinic at Children's to get Pentamidine, but they wound up getting home at 7pm with a ticked-off Becca, as she was forced to "go" in her carseat on the ride home. Again, as Lily and I walked in the door after Lily's meet-the-teacher night, and Becca in the bathtub, home care was knocking on the door for more signing off and training. Before that could happen, though, we had to do a dressing change, as her dressing was falling off and then wet from the bath. Usually she despises dressing changes, but she has progressively gotten a little more tolerant of them. That night was surely an exception. We had to hold a screaming, writhing Becca down as she tried to pinch the nurse and me and kick Ethan, so that he could remove the tapes and coverings, clean the central line area, and apply a clean dressing. Lily ran outside so that she didn't have to hear or see what was going on. Needless to say, she was totally spent by the end of that ordeal, and she fell asleep as I rocked her in the chair. She slept for 30 minutes, and we were excited about that, but then she woke up to go again. Becca wanted to go right back to sleep, but we still had a fight ahead of us to get nine syringes of oral medications in her. Let's just say it ended with us saying, "Well, we'll ask Nurse Linda to give us a shot of your medicines, then..." We decided to hold off on her TPN and lipids overnight that night so that she had more of a chance of sleeping for longer bits of time.
Tuesday was a bit better. Ethan tethered Becca to her TPN and lipids, using the nifty and much more portable backpack instead of the IV pole. They didn't have to head to the hospital, so it was nice to just hang at home, and they even made cookie dough together. Ethan spent a large portion of the day organizing the abundance of medical supplies, medications, and "stuff" we will be using. Luckily, we won't be entertaining anytime soon, because our dining room now looks like the Pyxis at the hospital. If you know Ethan, you realize he's not the most organized person, so it was cute to see that he had so thoughtfully planned out where things belong and what is most functional. He had also cleaned the bathroom, counters, and floors in the kitchen several times during the day, which is also unlike him. All of this on not much sleep is pretty impressive.
Becca was really uncomfortable and itchy in her lower region last evening, screaming that she didn't want to be her again. It is so heartbreaking to hear her say that, and I feel so helpless. I wish I could take all or at least some of the pain away. She was in so much pain that she was even ready to try taking a pill (one that would help her have some relief from the BK virus, but that she has resisted in liquid form because it looks like blood). Ethan tried to help her swallow the pill, but it was a complete disaster. Becca has never taken a pill, and the debacle ended in her spitting the pill across the room while laughing.
Today we are at the hospital for a bone marrow aspiration and biopsy, and they just finished giving Becca platelets. Ethan and Becca will come back tomorrow for IVIG. Will post more later!