Joey was discharged on his 5 month birthday, Tuesday, the 6th of February! It was a chaotic, stressful, all-day affair getting him out of the hospital, but we made it! And it was a great way to celebrate another month with our Joey. Wednesday we spent the day readjusting to life at home, sorting out and attempting to find homes for all of his meds and their accompanying supplies (for now their home is our dining room table 😅), and trying to get some rest. We snuggled, played, and gave Joey a much needed, albeit modified, bath. It was exhausting in a different way, more overwhelming than anything. But a great day all together back home, and one we had been looking forward to for weeks. Little did we know it would be our only full day away from
the hospital this week!
Thursday morning was our first (outpatient) clinic/lab appointment. We will have these twice a week for the next several weeks, and they will taper off throughout his first year post-transplant. Overall it went well. However, his lab results came back in the afternoon, indicating that his liver enzymes were high. We were told to come in Friday for an ultrasound and additional lab work to see if the numbers had changed, and whether they were trending upwards. I asked if there was a possibility we could be readmitted based on the results and was told yes, and that we should pack a bag. We have now learned just to always have one ready to go…
Liver enzymes can be high for a variety of reasons. From something like a virus, or some sort of vascular issue with the new liver, or his body rejecting his new liver. Because the cause of his original liver's failure is still unknown, it makes figuring this out a bit trickier without additional research.
So yesterday, we trekked back to the hospital (thank goodness we don't live very far away). Joey was such a trooper all day…. We were there for almost 8 hours before being admitted again, basically stuck between two tiny rooms. Chris and I were going stir crazy and Joey was just happy to be with his mom and dad. He’s really the best baby, and we love him so much.
Anyway, his ultrasound results looked great, so it isn't a vascular issue. Yay! But his enzyme levels were even higher in yesterday’s labs than the previous day, which is ultimately why he was readmitted to the hospital- for further testing/treatment/observation. We’re hoping if it is rejection, it’s on the mild side. This can apparently be addressed relatively easily with additional steroids, which have already been started. If his numbers aren’t improving after today’s dose, they will likely do a liver biopsy to see how severe the rejection is. If it’s on the more severe side, which there are no signs indicating this is the case, it could require a lengthier stay with additional treatments and potentially being relisted for a transplant.
I won’t lie, yesterday was really hard. Getting readmitted so soon really crushed my spirits. Being at home, returning to a semblance or normalcy was a tease. The feeling of relief when we left the hospital on Tuesday is waning. This past month has left me feeling really depleted.
But then I look down into Joey’s big blue/green/gold eyes and see his gummy little smile, and think about his strength and resilience. And that is what keeps me going. He needs me at my best, he deserves me at my best.
So, I’m trying to be better about self care. Last night I went home, ate half a sleeve of thin mints in bed (don’t judge me!), slept for almost 8 hours, and took a nice hot shower this morning. I listened to my music on the car ride back in, and am feeling much better today.
I’d also like to take this time to give Chris a much deserved shoutout. He has been unwaveringly supportive and unbelievably strong. I can’t imagine taking this on with anyone else by my side. I am so grateful to him and for him, and I love him more every second that goes by.
Hopefully Joey will be discharged in a few days and we can resume our life at home again!
We are so appreciative of all of the continued love and support from everyone! You all are the best 🩷
All our love,
The Moschellas
Comentarios