Tuesday, August 31, 2010

Follow-up on Gabriellas CMV

I really get angry at myself when I let more than a few days go between posts. I know thats like one of the top rules for mom-bloggers, and keeping a successful blog. You have to keep your content fresh and frequent. I really gotta get better about this.....

Not that it is an excuse, but wow have these last couple weeks been hard on me. I have a multitude of stressors and emotions existing inside this momma heart and brain, but I am really focusing on fixing my eyes on God and His plan. We are faithful. He is merciful. Trying to dance in the rain instead of waiting for the storm to pass.

Gabriella is on day 12 of her IV infusions. We actually went to clinic last Thursday and the doctor decided to bring her back in that afternoon for a 6 hour infusion of Cytogam, which is a bit more harsh than the at home IV med so they do it inpatient. We are hoping that that extra infusion flushed out any active CMV in her system and hopefully her bloodwork from this Thursday will show her in the clear. The spots on her skin have faded and no new area have appeared, which is a visual sign to me that we are over the CMV scare. We will go to clinic on Thursday and find out our fate of treatment. She will either be super conservative and do one more 6 hour infusion of Cytogam and continue the at home Ganciclovir for another week, or she will stop all treatments and put her on oral meds equivalent to the Gan. I'm hoping for the 'stop all meds' option. Honestly, I want this PICC line out and I want it out now. It is just a route for infection.... and I am not excited about that.

Many of you nurses or heart moms may wonder why I am so eager to get this PICC out, or why I was so opposed to start. Well, I'll go ahead and spill my guts. My (step)dad died July 2003 of septic shock, of which he received via his PICC line port he had placed for dialysis. Of course, given his stroke/diabetes/kidney failure issues, his system was down as it was, but going into septic shock of course guided him to an untimely (to us) departure from this earth. The last thing I need is for my daughter, named after him and exists because his death made me realize life was too short to not grow my family, who had a stroke and was just like him afterwards, and who is also immunosuppressed, to get an infection in her post and go septic. And I know I normally have it 'all together' and do my homework on everything but you HAVE to allow me to be a hypochondriac on this one thing, right???

So Thursday we will find out the course of treatment. The beautiful thing about the peds transplant doctors at Loma Linda is that they have been doing this SO long, they don't feel the need to go standard textbook protocol on every patient. Instead, they tailor the best course of treatment for that specific individual based on years and years and years of experience in knowing what works for different types of people. That is why this is just a 'play it by ear' treatment.... because they are working on what would be best in Gabriella's outbreak of CMV and the way her body responded. This is also why they will be long distance treating Gabriella when we go back to AZ.... because you KNOW I will call them for EVERYTHING.

2 comments:

MarfMom said...

your concerns are TOTALLY understandable! i'll pray that her picc line is able to come out soon and that if not, she stays infection free.

cici said...

I am keeping you and little Gabriella in my Prayers Kristi. You have both been through so much and need God's loving hand to heal.
Stay strong
xxoo

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