Good Evening Everyone,

Sorry its been so long since our last blog post.  Its been a whirlwind to say the least but we have so much to discuss.  We will detail and highlight the events that have transpired since late January below.

Once Fin and Jean left the hospital, they ended up staying at the Ronald McDonald House (RMDH) for five weeks.  The RMDH has its own transplant wing with apartments which works great for both extended stays and  staying isolated from the general public.  They also provided three hot meals each day cooked onsite by either RMD staff or volunteer groups.  Fin went to transplant clinic twice a week for follow up and labs at Childrens which was only 5 minutes from RMDH.  In the future, our plan as a family is to volunteer at the RMDH and give back to  a wonderful organization that took care of us.

On February 18th, Fin and Jean were able to come home from the RMDH and start settling in to post transplant life.  Early on Fin was fairly stable with only minor tweaks to medications (lots of medications, I’ll touch on that later!).  Fin ended up spiking a fever on March 14 that was high enough to warrant a phone call to our transplant team.  We were admitted to the Christus ER under the direction of Childrens in Dallas.  Christus did not have the testing capabilities needed to find out why he was spiking a fever so we were transferred via ambulance to Childrens in Dallas for further evaluation.  Fin ended up going through a gamut of tests that ultimately did not reveal any illness.  He was acting like himself but his liver enzymes continued to increase.  The transplant team decided to proceed with a biopsy of his liver to determine if he was experiencing a rejection episode.  Right before going back, Fin spiked another fever.  There was an urgency to get the biopsy done but increased risk of internal bleeding due to the medications that he is on.  We proceeded with the biopsy and ended up not having any complications.  After a waiting period, it was confirmed that Fin was experiencing a mild rejection episode.  He went through a IV steroid regiment to calm his immune system down and bring his enzymes down.  We ended up staying in the hospital for 8 days total.  We’ve recently experienced a few more fever episodes but both cases ended up being a illness this time (common cold and suspected virus). 

All in all, Fin has done remarkably well.  His cloudiness that he experienced with MSUD has now gone away and provided such clarity for Fin.  His language has exponentially expanded and he’s learning new things daily.  Our new routine still involves a tremendous amount of medications:

Morning (9 a.m.) – 10 medications total   

Early Afternoon (1 p.m.) – 2 medications total

Night (9 p.m.) – 5 medications total

As Fin gets further out from his transplant and numbers normalize, we will also start a weaning process.  The goal is to be on the lowest dose possible one year post transplant and only taking one medication (Tacro – Anti-Rejection medication). 

Fin has definetly broke us in as new parents but ultimately we look back and have no regrets.  God is slowly revealing answers to us and we are hopeful for the future.  Please continue to pray for Fin but also his donor family.  We are forever grateful to our donor family for giving a new outlook on life for our son. 

Love you all and we’ll blog soon!  I promise 🙂

Until next time,

The Strothers