Wednesday, September 27: Day +41 Post Transplant
Anna is home from the hospital and our family is under one roof again. This outweighs all of the new challenges we are faced, some of which I’ll tell you about. Our little warrior has reached a huge milestone after 45 days at Phoenix Children’s hospital. Add that to the 14 days she spent there in July getting chemotherapy, Anna has been in the hospital for nearly 60 days over the past three months.
You picture coming home as one of those magical life moments you’ll remember fondly forever. The reality was much different, yet still memorable. About 10 days ago Anna was flying high. She had involuntarily lost her feeding tube (she threw it up, for the fourth time) and the doctors decided to leave it out – partly to avoid the trauma of the procedure to put it back in place and partly because Anna was doing well and close to not needing it anyway. With home on the horizon, Anna’s energy was reaching new heights. She did 34 laps around the BMT wing one day on the modified bicycle and was getting plenty of exercise playing “Just Dance” on her Nintendo Wii. While challenging, Anna had transitioned to taking all the medications she had received through her tube by mouth – totaling about a dozen – no small feat.
It was determined Anna was ready to go home with one caveat: the feeding tube must be placed again to ensure Anna was getting the nutrition she needed to heal. This was a blow to her morale. Quite simply she hates the way it feels. So, this bump in the road impacted her attitude around discharge day. On top of that her blood pressure was high accompanied by a nasty headache. The staff at PCH makes the patient feel very proud to be going home. They presented Anna with a “BMT Graduate” medal and lined the hallway as we walked out of room 7107. Anna managed a thank you and a few smiles before heading home, tired and weary.
I believe the hardest part of being home is the fact that the home care Anna needs is done by Melissa and I. The things that make Anna feel yucky or hurt are administered by our hands, and the feeling that you are causing that pain sucks. She knows it’s necessary, but it doesn’t make it any easier. After all the turmoil surrounding the tube reinsertion Anna ended up coughing up her nose tube again after a few days home. We hope this time it stays out for good. Anna is much happier without it! The trick is getting her to eat and drink.
Melissa has been amazing. She has taken on the lion’s share of the home care, including the complicated process of preparing her IV medications each evening. It’s an overwhelming amount of information, and the procedures are not something you want to screw up. This used to be our bar. Now it holds enough supplies to outfit a small M.A.S.H. unit.
In the meantime, we will head to the hospital 2-3 times a week for treatment, lab work and check ups. That’s our new normal. We’ll adapt to the routine, and in time, it won’t seem so overwhelming.
Anna is adjusting to home. She is enjoying her ‘fan mail’ as much as ever. Thank you for continuing to lift her spirits.
The sisters are happy to be reunited. We’ve noticed genuine concern from Margaret and Anna doesn’t seem to be quite as bothered by her little sis!
Anna is allowed short ventures outside (with her mask on) and spends the rest of her time building legos, watching her favorite shows and playing Wii. She’s allowed visitors in moderation, and her friend Emma spent a few hours with her buddy on Sunday. Her friend Abbie is due for a visit tomorow. We hope her homebound schooling begins this week. A special thanks to Michael Borum at PCH, who tutored Anna throughout her stay. Perhaps no one at the hospital brought more smiles to Anna’s face than ‘Teacher Mike’!
This doesn’t end when we go home, wrapped in a neat little package with a big pink bow. Her fight is still in round one. But she won the round, the hardest round. I predict a TKO before it goes the distance.
Tim