Week of transplant: April 13-18
We’re running a marathon on an uncharted course and it is full of hills. The ups and downs of recovery are expected, yet unpredictable. Here’s a quick recap:
Day 1 and 2 post Open Heart Transplant (OHT): early progress, pain management challenges, grit, determination, successful walks
Day 3 post OHT: a walk all the way down the hall, but some decline in the afternoon/evening
Today’s Update: Post OHT Day 5, Hospital Day 17
This stretch of the marathon has been a hard one. Kya’s been extremely fatigued, running a low body temperature, struggling to take full breaths, and has been too weak to walk for two days. Imaging showed a partially collapsed lower lung (atelectasis). Her kidneys haven’t been able to keep up with removing fluid and processing all the medications. Her right ventricle is still “waking up,” which is common in these early days.
None of this has a single clear cause. It could be medication side effects, the normal post‑op inflammatory storm, fluid overload, the start of an infection, or a mix of all of the above. These are known complications in the early phase of transplant recovery — not completely unexpected, but still undesired and hard to go through.
Today they’re starting Continuous Renal Replacement Therapy (CRRT) to help her kidneys rest and remove excess fluid. She’s continuing respiratory therapy to help her lung re‑expand, and her team is monitoring her closely, adjusting as they go.
Still Strong
Her new heart continues to function well with no signs of rejection. The team remains proactive and attentive. They were able to remove her chest tubes today. This is progress and should help her feel more comfortable. This phase is difficult, and not what we hoped for, but these are the early miles and with time, can be recovered from.
There’s been some emotional whiplash from progress, setback and regrouping – a bit like taking a tumble in the early part of a marathon. There’s a lot of uncertainty and all we can do is focus on the next steps. Docs are assessing and adjusting for the long road of recovery, reminding us it isn’t a straight line.
In the middle of it all, Kya keeps giving us these tear-jerking, gut-level moments. They’re the kind of moments you hear from someone who is running the race of their life:
“Let’s do this.”
“It’s worth it. It hurts so bad, but I feel proud of myself.”
“I don’t know if I can do it.” You already are, my dear, and you’re doing a great job.
“I love you mommy.”
“I’m trying daddy.”
Our best looks different every day and she is giving everything she has. We’re hopeful for a turnaround soon, and expect to remain in the ICU as she works through this part of the course.
To All of You – THANK YOU
Thank you for the song suggestions that are building her recovery playlist, for the cards, for the messages, prayers and encouragement that meet us at every turn. You help keep us moving through this long, uneven journey.
If you have sent a package, please let us know! Some are arriving and we don’t know who they are from. Also, thank you for your thoughtfulness.
Every day is a win for #TeamKya!
Keep it up! I know it isn’t easy… but you can get through this!
I’m thinking of having a Backstreet Boys EP CD marathon as I watch HOU @ LA – GO LAKERS! I still believe Jordan (CHI, WAS) is much superior than LeBron James, tho. I think Eli would agree when I say that when it’s 2 or 3 OT, 2:00 on the scoreboard & you need a 3-pointer, you don’t ALWAYS need the star player – I.e. Jordan, Pippen, Rodman – but sometimes you just need a underdog… like Steve Kerr; Toni Kukok. Even if it’s just Game 1 of Division Playoffs…
Prayers are with you all – Hunter Hamilton (Double H) & Doyle’s and Doyle-Roeder’s (and our furry family friends) – not to forget The Bolivar, MO United Methodist Church.