As many of you are aware Katy was admitted to Children’s Hospital last night ( Monday 6-10) after her blood work from Friday showed some crazy numbers… of course our #1 fear is and always will be is the fear of rejection and when I got the call from Mike that we needed to head in immediately… I immediately feared that would prove to be true. As it turns out Kathryn has CMV.
Cytomegalovirus is a very common virus found in approximately 85% of the population… the fellow last night quoted 95% but I couldn’t find numbers to back that up. Like many other viruses it is a non issue for the healthy non immunosuppressed crowd however it can be fatal for a child like Kate if left untreated. The biggest issue right now is that as this virus attacks Katy’s body it can do irreparable damage to her heart AKA rejection or other vital organs
Prior to transplant Kate tested negative to CMV however her donor was positive. As a result Katy has been treated with a drug (Valcyte) to prevent her from contracting CMV ( clearly it did not work) so it is now our fear, although not confirmed yet that she may be resistant to the typical drugs used to treat CMV.
Currently we are settled in on 8 East and we don’t see a discharge date in site. There is talk of going home with a picc line since the current med she is being given to fight the CMV ( Ganciclvir) is given twice per day via IV and it is unknown how long she would require that drug.
I am a mess… I finally felt for one split second life was dare I say normal. Soccer, swimming, play dates. Just start to get comfortable with our new life and smack!
Katy is so brave and so strong. Never complains… but if she has to go home with a PICC line I just KNOW she will be devastated…since it will ruin her summer that she is so excited for… we have so much planned.
I am done… I feel like this is our forever and we should never try to move forward since we will always be knocked back down anytime we try.
Please pray that the meds work and get the CMV under control without damaging Katy’s precious heart.