Heart Failure to Transplant: Closer to Transplant

This was posted to my CaringBridge journal on Jan 15, 2015:

Monday we got set up with Kaweah's Private Home Care, and starting Tuesday have had a home care aide here with me to help with the boys and housework from 7:30 to 3:30 each day.  A woman from my church named Judy, my mother-in-law Brenda and our faithful friend Polly have been filling in the gaps so that I am never alone with the kids.

Monday I also received the call from Cedars-Sinai to let me know that I've been officially listed with the United Network of Organ Sharing (UNOS) as a Status 1B.  They feel based on my petite size that I could get an organ offer any time now.

This week has had many challenges and adjustments for everyone.  Adam has risen to the challenge and shouldered so much of the responsibility for my care and the care of the kids and has really done admirably in keeping his patience and a good attitude through it all.  Your prayers are felt and appreciated in this area as in all other aspects of this journey.

Elliott and Zachary are adjusting well to the abrupt weaning all considered, but both have had rough moments and tears, particularly around nap times and bedtimes.  I'm talking them and me through it, acknowledging out loud that this is a big change for all of us, that it is hard and sad and OK to cry and miss it, and that it will get better as we learn new ways to relate to one another.  

Weaning brings shifts in hormones which is making me all the more emotional.  Tears have been very near the surface since yesterday afternoon.  I miss my babies even though they are right here.  Just typing those words makes the tears start again.  And that is OK.  I'm not scared of my sadness and I know it will end/lessen.  I don't need anyone to talk me out of it or cheer me up or pity me, just to reflect my feelings and offer hugs.  

This morning I decided at the last minute to go to MOPS after all.  It wiped me out, but it was so good to get to make a craft, get some real-life hugs and talk about my situation and about everything but my situation.  The boys were able to stay home with the home care aide, and I got a ride there and back.  

I have three upcoming appointments.  First a trip to Fresno for a blood draw and dressing change for my PICC line on Friday afternoon. Next a phone appointment on January 20 with a nurse from the heart failure team at Kaiser Santa Clara to check how I'm faring, and finally a phone appointment with Dr. Weisshaar on February 5.  

When I was discharged from the hospital last week, I was told that they (they being the heart failure/transplant cardiologists at Kaiser and Cedars-Sinai) want to be very vigilant going forward for the least sign that I'm declining further so that if I do they can admit me to the hospital at Cedars-Sinai to wait for transplant as a 1A.  Either of the two follow up phone appointments could be triggers for that decision depending on how I am doing.  

In light of that and the prediction from the Cedars-Sinai transplant coordinator that I could get a call any time as a 1B, I've been working on contingency plans.  What do I need to have packed in advance.  What happens if the call comes at this time or that time, who will watch the kids, how will transportation work, and so on.  

My original gut feeling when transplant was discussed was that our family should stay together as much as possible.  Then as we began to discuss it more, it seemed to make sense to have Charlotte stay with George and Brenda so she could continue going to school up here and Zachary and Elliott would go to stay with my parents.  It would potentially minimize disruption to Charlotte's routine.  It would make it easier on my mom to only care for the two boys.  

But looking at it now that the separation is a real imminent possibility, I can't bear the thought of Charlotte being left behind and separated from the rest of us.  Yes she could visit, but she's only six, and I think that is too young to live apart from me, her dad and siblings except for visits for the whole two to three months that I am in the hospital and required to live in Southern California while I'm recovering post-transplant.  I feel even more strongly that our family needs to stay together.

Temporary remote independent study through her current charter school (Valley Life) is a possibility.  We could also take her out and transfer her to a school in Southern California, but that would mean losing her spot at VLCS.  

Anyway, I talked it over with Adam last night and he agreed that we could make it work for Charlotte to come with us. Then I talked to my mom this afternoon and she said it is totally fine for Charlotte to come stay there with the boys.  She suggested that maybe another relative or friend who lives nearby in Orange County can have Charlotte come over regularly to do school work if we go the independent study route.

God's perfect timing and plan are all coming together...