It saddens me to say that Kathryn has been listed on the transplant list for over 4 months. Four long months of waiting and jumping each and every time the phone rings.
When she was first listed our doctor said it could take 6-12 months ( I mean its all an estimation) there is no way to know. But our doctor felt based on Kate and her personal experience that Kate would have a new heart by Christmas.
As we quickly approach Christmas, the thought of her perfect heart coming in time for Christmas seems highly unlikely.
I am also feeling like I am giving up hope. It seems that most babies/toddlers that we know that were waiting on a heart had theirs as soon as 3 months. 3 months has come and gone and here we still sit battling feeding tube infections, configuring meds, trying to increase her tube feeds since her appetite has decreased.
Again I find myself afraid of the transplant once again. I am afraid of the complications. I JUST DON”T WANT THIS LIFE FOR ME, MIKE, PATRICK and especially sweet, sweet Katy.
Kate’s G tube ( you know the one that I never wanted her to have) has been nothing but a huge source of infection. As you may remember Kate was in back in October for an infected G tube admission. Well we learned then that her tube was infected with MRSA. Which was a HUGE bummer but thankfully the rest of us have all been tested and we are MRSA free. Katy is currently on a very strong does of multiple antibiotics in an effort to decolonize the MRSA. Which is why we are having her Peg tube changed to a Mic Key button. After much discussion with GI, Infectious Disease and Transplant we have all decided that is the best option. Even though the peg tube has only been in 3 months and they prefer them to be in for 6 before they switch them over.
What should be a pretty normal sometimes office visit procedure has turned into yet another hospital stay for our little one. Since we are doing it early the fear is that it has not healed well inside so it seemed to be a safer option to have it placed in a more controlled surgical environment. Which means super strong meds to keep her heart functioning as it should. The super strong med that scares the crap out of the General Anesthesiologist was recommended by our Cardiac Anesthesiologist. Which you can only imagine how that makes me feel.
I hope and pray it’s a quick admission since I am so sick of spending a million dollars on parking and food at Au Bon Puke. I could surely use that many spent to buy K& P another Christmas gift that they so deserve.
Thankfully, my mom is coming here to stay with Patrick which is good, so his life is the least interrupted.
Please pray for our princess on Wed. As I know you do each and everyday. I will update as often as I can.