I'm sorry I've been so MIA. Life at home is crazy. It's wonderful but it is HARD. I go non-stop, all day. I think I am more exhausted now than I was when we were in the hospital.
Before I get into life at home, I have some great news regarding Kate's biopsy results. Prior to the biopsy, we were told to expect Kate's marrow to be pretty empty. Our goal was to simply check that all three cell lines (red, white, and platelets) were growing at all stages of maturity. We were also checking for the percentage donor cells in her bone marrow. Kate shocked us all when her results came back!
Her marrow is totally full - 95% cellularity and all cell types and stages of growth are present! But the best news is that 99%+ of her bone marrow cells are HEALTHY DONOR CELLS!!! We are so thankful for this amazing news! Her doctors were completely shocked at how "full" she was. Apparently it is very rare to be completely full so soon post engraftment! Your prayers are working!
Ok, back to life at home...
I don't want to come across as complaining, because Alex and I are so incredibly thankful that Kate is home, that we are all under one roof, that we aren't in temporary housing. We are blessed to live so close to Texas Children's. So, we are definitely counting every single one of our blessings.
However, that doesn't make home life any easier.
Kate is having a hard time transitioning. We expected it. She spent almost 40 days in a teeny tiny hospital room with someone (me, Alex, or a nurse) in the room with her at all times. Add in the fact that she is 13 months old and dealing with normal 13 month old separation anxiety and we have quite the attached little girl on our hands. Kate has to see me or Alex at all times. If she can't see us, and get to us, she totally freaks out.
This has lead to lots of rocking, cuddling, and holding. I'm not complaining about that at all - I love the time to just sit and hang out with Kate! But, it makes getting things done nearly impossible. I've yet to cook a meal since coming home. I've yet to clean much of anything (thank goodness for our amazing house keeper). I've yet to really do anything other than deal with Kate's attachment issues.
On top of that, sleep is a huge struggle as well. She slept in the bed with me at the hospital and stopped taking a paci due to her mouth sores. So, Kate lacks any ability to self soothe now. She is still refusing her paci and if she wakes up and can't get to me, she has a breakdown. We are trying to transition her to her crib and have been successful for night time (as long as I run to her room as soon as I hear the slightest peep) but naps are still a challenge. I have to lay down with her to get to her take a nap and then stay with her for the entire nap. It helps my exhaustion as I am able nap a bit myself but it does nothing for me getting things done around the house.
I've also taken over the role as Kate's in home "nurse". I use the term lightly as I have no medical training other than the teaching sessions I had prior to coming home. But, I am responsible for all of her medications (which she gets around the clock - I have to set my alarm for multiple over night meds) as well as her TPN (IV nutrition). I stress myself out about these responsibilities. I can't chance missing a medication. What if I hook her TPN up wrong? What if I forget to clean her line prior to flushing it? What if I forget to hep lock her lines and they clot?
I have notes all over the house - medication schedules, lists of the steps I need to do for everything, reminders to not forget this or that. I have put so much pressure on myself to do all of this perfectly. I wake up in the middle of the night wondering if I left her lines unclamped all day. Or worrying that I forgot to give her a medication. It is stressful to be in charge of such an important part of Kate's recovery!
We also have clinic appointments three days a week that take anywhere from an hour to 5 hours. It is all dependent on what blood product Kate needs. She is still getting platelets a few times a week (her platelets have yet to increase on their own - she is totally dependent on transfusions right now) and red blood ever 1.5-2 weeks. We are praying that her marrow starts pushing out those healthy cells so she can stop getting so many transfusions.
Despite how hard life is right now, we are so thankful that Kate is doing so well so soon after transplant! We are still struggling with eat and throwing up but hopefully that will get better soon!
Again, I hope this doesn't come across as one big complaint. We really are blessed and thankful to be home. I just need to get everything out sometimes!
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