Today was our first full day home.
And it was horrible.
I'm not going to lie, part of me missed the hospital.
The safe, calm, clean, quiet hospital. Not the chaos of my house. The Children's Hospital where the nurses grind the prednisone and put it in gel caps. Where the nurses page the doctors when I have concerns about her pain or nausea. I miss the nurses. I miss the safety net. At home I'm flying with no net. At home I am the one paging the doctors. And at home I am the one cutting and grinding her prednisone and carefully filling gel caps.
Abigail's nausea has not been well controlled today
at all. We have tried everything from the prescriptions, over the counter, homeopathic, and non-traditional. Nothing seemed to really help at all. But now with our new regimen of Zofran, Benadryl, and Ativan every 6 hours she is feeling much better. However, she fell about 45 min ago trying to get to the bathroom, and she is now considered "High Fall Risk" at my house. I blame the meds. Up until tonight she has been very steady on her feet. So now I get the added excitement of monitoring her new bruise. The other horrible side effect of the Benadryl is restless legs. She is finally sleeping. I think the side effects of dizziness and restless legs far outweigh puking all night long. I love that my boss, who also happens to be one of the smartest NPs I know, has been available to me all night. I've called her several times.
The other blow today... we will likely have to move Abigail's care outside of UW health system. We found out this evening they are out of network and her hospital stay will be payed for, but no further care or treatments will be. So first thing in the morning we will be calling our case manager, social worker, and the insurance to figure out what the fuck to do now. I am still hoping that there is a chance to stay there. But like I said, it's unlikely. Fuck insurance. Fuck cancer.
I had a
minor breakdown today. Fortunately I have friends who are aware of what I need (chocolate and red wine, perhaps Xanax even) and I had a nice long cry. And I reminded myself that I am really glad to be here.
It was overall an extremely long day with her dad here (he had a sleep over with Joseph), then our oldest came with her husband for the day. We had our home health nurse visit (more on that later, ugh). Just long. Tiring. At one point Abigail was in my jet tub, I was holding a cool cloth on her head and a puke buket in another hand, and her older sister Aly was in the room supporting her as well. I had a moment where I felt like I was on the outside looking in, and it looked like one of the many birth rooms I have attended. I told Aly, "We are midwifing her through this." I miss my midwifing days. But I never want to have to relive Day 8 again. I have a feeling Day 15 is going to be very similar though.
I'm coping with everything by making more spreadsheets and check lists. Aly and Victor (my son in law) helped me make a week's worth of gel caps. And I also started the day off with some well deserved girly pampering and primping. I am ending the day in a nice, warm, fuzzy haze of red wine.
Our friend Jessica set up a
Gofundme account to help us with some of the financial burden. At first this embarrassed me, but now I understand. People want to help and feel helpless, donating even small amounts really adds up for us, and helps other feel like they are contributing. The link is
here. If you are unable to donate, please just consider sharing the link. If you already have donated, please know we are graciously accepting and are unable to put into words the depth of our gratitude.
When it was time to update Chris about how she did today, I made Susie do it. My breakdown was so profound I couldn't even text him. My heart is sad and broken and it feels like it will never be the same.
