Yesterday we had transplant clinic... what turned out to be our last one here at Loma Linda. Gabriella is slowly gaining weight, her heart function looks great and there were no concerns! Best thing about this appointment was we went a whole 2 weeks without going in!! The last time we attempted a 2 week stretch, she ended up with CMV! The doctor moved Gabriella's meds to twice a day instead of 3 times, eliminating the 1am dose. In one week we will go in for bloodwork to make sure the new dosages are keeping her within target range for her immune suppression and then GO HOME! It is so odd to think of that. By our go home date, Gabriella and I would have gone 131 days without seeing our apartment, or even our state! Thats 1/3 of a year!!
I won't lie, and its not a secret to some I have confided in. I am having a hard time thinking of going home. Aside from the fact that I absolutely love California, have met some amazing people and feel like we fit in so great here.... I am going to have some major insecurity to get over leaving our team of doctors. Knowing their experience and comfort dealing with heart transplant kids for the last 25 years is huge. Perfect example is how Dr S turned a little freckle spot into CMV before it damaged her heart.... thats just incredible. We always have an immediate response to blood work which in turn leads to adjusting her medication levels immediately (at home it will not be as immediate). I know that if you put Gabriella in a line with 5 other heart kids, Dr S would know her heart because she has been so close to it. I know that if an emergency arise, one of the amazing surgeons could go in blindly to her chest and be confident in their ability to work on her. They know her heart inside out, their phlebotimist is consistent and amazing.... they are just plain amazing. I am trying to not let my comfort here set a preconceived notion about our new cardiologist back in Arizona that will follow her, but it is hard to ignore the comparison of experience. The good thing is that I am on it when it comes to what she specifically has been through. I'm educated on what has been with her and I think that will allow for more communication with the doctor. The problem is I don't know what we have yet to face... so I am fearful in walking that path without my amazing coordinators at Loma Linda. They are part of our family... and I will be eager to come back in November for clinic and her GFR testing.
Of course, I cannot minimize the excitement I will have to see my family. My godson has started school, my brother in law and his wife brought their new baby girl into the world, my littlest nephews have aged 4 months, some people I have seen a couple times and some not at all in 4 months! I have amazing friends in Arizona to help me fill the gap my friends here will leave when we aren't seeing them so often. The timing of everything allows us to come home just before the holidays and not miss out on such important family time. And not to mention, my amazing little apartment that we love so much. God is in that place... and I'm super excited to get back to our own space (where all 4 of us don't share a bedroom!!!)!
The best part of it all is regardless of where home might be, Gabriella is healthy enough to be released! She is a fighter and has yet again shown us the resilience of a child.
Of course none of this would have been made possible without the Ronald McDonald House. Just amazing. We have had this place to give us shelter and location close to the hospital for 4 months. Its downfalls of being 450sf and one bedroom are far out shadowed by the blessing of having a place to live and be together. Paul has been blessed by the most understanding and good-willed employer who allowed him to work remotely for 4 months, and he remained fiercely devoted to keeping focused on his work to make good on their generosity. I encourage you to contact your local Ronald McDonald house and see where they might need help. They accept time and financial donations. Our place cost us $15 per day... which is difficult for someone supporting 2 households in the shadows of the medical expenses piling up. The donations the house received helps families who might not be able to make their payment. The things people donate like toilet paper and paper towels and other essentials prevent us from having even MORE expense while we are displaced. Their volunteer meals and food for the kitchen stock are a blessing when the cafeteria meals can add up to $100's per week. The house is a place of refuge in the midst of being displaced... and I so wish everyone could know the blessing that it is without having to experience it firsthand!
Back to the post at hand... every single day has been a blessing to have lived since May 17. Not just for Gabriella, for all of us. While days have been hard here and there for a magnitude of reasons, we never loose sight of the blessing we have been given to just breathe. The trials are no longer a nuisance, but a learning experience to make us better people. We will take this 4 month marker and run with it! Praising God all the way!!!