It’s so hard to believe Cohen has only been discharged a week and half because this last week has been such a roller coaster!
After Cohen’s labs on Monday the 5th, two days post discharge, we saw a sharp rise in his liver numbers. His team wanted him to get labs done again the next day to watch it. They also wanted to schedule him an ultrasound and tentative biopsy should he need it that week. When they saw the labs rise again Tuesday it was a for sure that he would need the liver biopsy and the soonest they could schedule it for was Thursday.

It’s really jarring seeing numbers turn quickly without reason. Wednesday he had his ultrasound, which being just a few weeks post major surgery and it involving a lot of pushing on his incision site was pretty uncomfortable for him. Have we mentioned he’s a trooper?!

We then had to break the news to him that we would be headed back in for a procedure and to be re-admitted. 😢 The biopsy is the best way to see what is actually happening with the liver cells and if any rejection is occurring. We counted that this was Cohen’s 11th time being put under for any sort of procedure or surgery. The hardest part for him is the separation and he was really struggling with it this time. I am so thankful the anesthesiologist ok’d for one of us to go back with him until he was asleep. This gave him so much more peace going under.

Long story short they let us know the biopsy showed mild early rejection. They think they caught it early and this is a very common thing post transplant, especially within the first 3 months. Everything with his ultrasound looked great which is so encouraging.

They immediately started him on high dose IV steroids and he was inpatient until Sunday to get treatment each day. His labs have been responding and trending back down although they did stall a little bit with yesterday’s labs and are not back to normal yet. Because of this they kept his steroid at a higher dose rather than weaning down as planned.

We appreciate prayers that these numbers come all the way back down soon! He is able to take his current steroid dose from home and we are really praying he won’t require any more admissions for this rejection (inflammation) to resolve and his immune system response to quiet down.

We also are praying he stays healthy in spite of his immunosuppression being even higher now (higher tacro goal + increase to cellcept + steroids). We also really hope to get his sisters down here and our family back together as a unit soon. Facetiming with a 2 year old has its challenges and we miss them so much!

Labs again for Cohen in the morning… 🙂 Thank you everyone for your prayers and encouragement! Knowing we aren’t alone in this transplant journey means so much to us!

Grattitudes:

The steroids make him starving! He needs this weight gain boost

Cohen no longer requires any oxygen all

Praising God for all He has done.