Factual health update:

Eliana’s kidney function is declining very fast. She was gradually losing function the last few months, but the rate at which it has declined the last 1-2 weeks has been shocking, to say the least. 3 weeks ago she caught a cold. It seemed minor at the time. 1 week later she was admitted for high blood pressure. Since then we have doubled her BP meds and watched her kidney function tank. She has not been able to maintain fluid edema for the last week. She has been inpatient since Wednesday 3/16, for strong doses of diuretics that still are proving to no longer be effective. The nephrology team anticipates the need for dialysis by tomorrow or Monday. She will need to do hemodialysis since she already has a perm catheter. The surgery for the placement of the PD catheter will likely be scheduled for next week. She will have both the PD cath + the perm cath for a few weeks in order to do hemo while the PD cath heals. Once she is healed and able to do PD at home, the perm catheter will be removed. We also need to decide when to remove the transplanted kidney, as there are pros and cons for it. Eliana is facing 3 surgeries in the next few weeks. She will need all the prayers and energy sent out for a quick recovery of each. She absolutely despises anesthesia and is known to wake up screaming, kicking, cursing, and pulling at tubes — so send some prayers our way too. 

 

Thoughts from Arielle:

Going into the donation process I already knew of the high chance of recurrence. I was terrified of it for a while. Closer to transplant I started to let go of those fears because I was gaining confidence that she would be able to reach remission after recurrence. In fact, she was soooo close to remission when BK virus showed up in her labs. I was not prepared for that! I didn’t even know what BK virus was until that day. We still fought through, with the hope that once the BK was gone we would be able to fight the FSGS again and eventually reach remission. Eliana has missed so much of third grade in order to be at the hospital 3-5x per week. It feels like a blink of an eye, and suddenly we are back where we were pre-transplant, and I am once again faced with having to give my child news that feels like a gut punch. I am so tired of watching my child suffer. She is such a sweetheart and does not deserve this pain. Damn this disease! It has completely changed her physically, mentally, and emotionally. It has robbed her of her childhood, her trust in people, and her sense of safety. I refuse to let it steal her from me. I will fight FSGS and kidney disease until we win. I will be there by her side at the hospital to ensure no mistakes are made (many close calls) and treatment is planned around her mental health too. Children without parents watching over at the hospital get poked and prodded more than truly necessary. #mamabear 

 

People often ask if we are “okay” and say they don’t understand how we “do it”. Well, when there is no other choice, you just push through. Plus we have my mom with us most of the time. We wouldn’t be able to do it without her. She and Jette have sacrificed so much to help us the last few years. Additionally, we all try to focus on gratitude. There truly are so many things to be grateful for: our support network, doctors that care, waking up this morning, the giggles we hear when the kids are laughing at the puppies, springtime, health insurance, my job, our own health, transportation, heck it wasn’t long ago we were all feeling thankful for toilet paper. It is easy to take things for granted, Nothing is guaranteed, not even our tomorrow.