Could It Be...

Since we spoke last there has been some exciting news buzzing around our hospital room. Before we get to that, it is time for a brief Sophie Kay update. Sunday/Monday last week she came down with a bit of a bug that affected her trach site. She was having some pretty "yuck" secretions from her trach site and just over all did not seem to be feeling well. Monday she was just completely uncomfortable and fussy all day. The next couple of days she slept it off. They started her on an antibiotic and steroid right away. I think they caught it before it got too bad. Today she was 100% herself.

Tuesday last week, I sat down in a larger conference room with a table of doctors and therapist. They sat me at the head of the table (surprisingly I was not nervous) and I got to go around and ask each one of them questions and her current updates on Sophia's progress. One thing that was brought to my attention was the term, lung disease. I had never heard that association with Sophia. They explained that her lungs are still relatively good but there are still unexplained things causing her need for support and at this point all they can do is to continue to support her and see how she improves with time. This was not the answer I was hoping for regarding her need for continued vent support. TIME seems to be the go-to answer.  My last question was... When are we going home? The doctor replied. "Good Question". The answer was we would like to schedule your vent classes and check offs for the first of April. So in the sly, I did not get a direct answer to that question either, but I did get a date for a class. This also means that after the vent class is complete and the vent check offs are done. We can start the countdown to home soon after. Basically, at this point we are preparing for her departure. In order to be sent home, Sophie has to be stable on the vent and in overall (relatively) good health and she can only be sent home with trained care givers. There is actually quite a few things the caregivers must do in order to "pass" as a trained caregiver. We have already taken our trach  classes and John and I have completed our list of 30+ trach check-offs. Once our trach check offs are complete we can then sign up for an 8 hr vent class which is followed by an 8 hr vent check off day. Each caregiver must attend the vent class and do an individual vent check-off day. John and I are having two other family members go through the caregiver training to be extra hands for Sophie and breaks for mommy and daddy. We have until April 1 to have all of the check-offs complete and then the first week in April is scheduled for the vent classes. After the vent classes are complete, then each caregiver has to complete an 8hr and a 24hr shift in which they care for Sophie alone without the assistance of a nurse. They nurses will only be there to watch over the caregivers and help in an emergency. After all of our training is complete, the medical supplies are ordered, the home nursing is lined up, and so on....dare I say, we could be heading HOME. The nurses said it takes at least 2-3 weeks to get everything completed after the vent classes and to get everything else in order before we cant go home. They will not send us home on a weekend or a Friday. AND of course, this is all dependent on Sophia staying stable on the home vent and she tells us shes ready to see her new room and be home with mommy and daddy. ALL and ALL this is wonderful wonderful news and the first ACTUAL timeline we have ever been given in our three months at Riley. Yet again, the hurry up and wait theme creeps back into play. We have to hurry up and get our training check offs and classes done and then wait for supplies and the behind the scenes things to come together and to see if Sophia says she is ready. I think she is ready... I certainly know mommy and daddy are beyond ready!!! So please everyone, fingers crossed, prayers lifting, and good vibes afloat that we stay on the fast track to home. Even though in reality this is still potentially a month away. If that is the last month, BRING IT ON. We are ready to go home.

HOME, I am so ready to be home. There are just somethings that can completely break my heart. Having to always say good night and good bye to Sophia. Knowing how hard my husband is working for our family and knowing how much his heart breaks he can't be with his girls everyday. That moment when you turn around to find Sophia crying without making a sound. I would give anything to hear her cry. There also some things that completely warm my heart. Seeing on my husbands face how much he loves Sophia. Knowing how simply blissful our life will be when we can tuck our baby into bed and not have to drive 40 mins away from her. Knowing when my husband goes to work, he will have his wife and baby girl waiting to give him kisses when he walks back in the door. Knowing that we can finally be our family of three. Knowing we can finally make that drive home from the hospital. Knowing that once we are home we can start making sense of our lives and start having a normal family routine (however abnormal that may be to others).

This LOVE is all I need!

GETTING HOME WILL MAKE EVERYTHING BETTER!