Hello, friends. I’m sorry there was such a gap in updates. It feels way too surreal to believe it’s been a full 2 weeks since first surgery. Our patience waiting for a donor was good preparation for this “hurry up and wait” to know whether these organs are working. We are still in the ICU but generally forward progress most days. As of last night, Alan is off of all meds providing cardiac support!! They are still keeping him externally paced to keep the heart revved up but it has a stable rate and sinus rhthym when they turn it off. It’s hard to judge his kidneys since he is still on continuous dialysis since surgery. His swelling and fluid overload is almost gone so decreasing dialysis in the near future is probable; at that point we will be able to truly evaluate his new kidney. In the meantime, he’s producing urine while on the dialysis so that’s a good sign, but some days he makes significantly more than others so still just a waiting game. His heart Caths and rejection biopsies started last week and are on Mondays, so we’ll have that tomorrow. 

Apart from the medical update… Alan himself is doing wonderful!! He is so funny and happy and sweet again even though he is still managing the pain from his incisions, removed defibrillator, and cracked/retracted ribs. He gets in and out of bed very well (holding nurses elbows because he can’t strain his chest too much) and his legs are getting strong and solid. His max was 75 steps on friday but that can’t increase much until he’s dettached from dialysis for true walks.

My leave of absence from work ends tomorrow. I requested to come back at 80% (4 days a week – so I could only be gone from cleveland a day and a half at a time, be able to get Alan to his weekly appointments when he is finally released home, and make up for missing 6 of the past 12 months with Reese). The preliminary ruling was my request is denied but I will know more tomorrow and obviously I won’t be at work by then so I am prepared for the consequences. I will have 30 days to reapply for my job, if it has not been filled, to not lose any perks or seniority – but again, that would require me to be there 5 days a week which likely will not be viable even a month from now. I have engulfed my life in that department for the past 14 years and thought I would never leave but my family will always be most important to me. We have missed way too much time living and we don’t even know that these organs are enough. I have no idea how I will provide for my family after this but I do know that time together is priceless and the emotional stability of my family is still my top priority. We have sacrificied so much to get here, we can survive the rest. Reese is also going to visit this week and the hospital vistation rules now allow her to be here as often as we want. It’s still a balance between Alan’s energy/healing, germs, and the sanity of our parents with 2 hour drives. We owe so much to our incredible parents (and siblings) for this dedicated village that has kept Reese safe, our pets alive, our house standing, and sacrified plenty of their own lives for us. All the more reason to make time for our family (and friends that became family) our top priority when we finally can come home. I am so happy to have Alan’s personality and smiles back and knowing we get our daughter so soon makes everything tolerable even if it is devastating.