It's been almost three months since we left Denver....here is my attempt to catch our blogged life up to speed.
After being discharged from the hospital post-transplant, Mercy remained well and stable so we were able to finally come HOME on September 12, 2011. I was excited and nervous at the same time. We came home with her broviac which made weekly lab draws very convenient. A home-health nurse came out every Tuesday to assess her and take blood. Soon, weekly lab draws turned into bi-weekly lab draws. Her labs have been perfect since transplant, no issues. Because of this, our feeling is that Mercy's body has "accepted" her new liver and will continue to do so...
She is currently taking two anti-rejection drugs, one that has gradually been tapering off and will eventually be omitted plus, the other which she will take for a lifetime. These medications esentially kill her immune system so she also takes an anti-viral, anti-bacterial and an anti-fungal. All other medications are to offset the side-effects that these medications cause. Because Mercy has no immune sytem except for her natural immunity (which we do everything possible to treat with great nutrition and whole foods), she is obviously very succeptible to getting sick. She cannot get sick. So, when I opened up the newspaper recently to read about the 30+ cases of whooping cough in our area.............It's scary. It's real stuff. We have always been careful about our public practices in order to help protect Mercy and trust me, we get the stares. It's too bad the newspaper doesn't educate the gazing public on infection control practices while reporting the facts involved in the "story" and give people the information they need to learn how to NOT spread disease (ex: hand-washing, yes.....it's that simple).
Being home was the greatest feeling in the world, especially because Mercy was (IS) doing so well. Oddly enough though, coming home proved to be a little more difficult and challenging than I had anticipated. It's crazy....when a person goes through tragedy, time seems to stand still for that person. Especially when "time" is all they count on, every day. For everyone else, life goes on....without the person experiencing the tragedy.
I also had another uneasy feeling for several weeks after coming home that I could not pin point. Then it dawned on me that every time this year that we had come home from the hospital in Denver (there were several prior to transplant), we would end up back down there. So with that came some fear, anxiety, and nervousness. I think we are finally over that feeling.
At the end of October, we celebrated her first birthday (!!!) and also made (what we hope) our last visit to the Children's Hospital Colorado. She had a minor O.R. visit again to remove her broviac. As usual, she pulled through like a champ and we got to say "goodbye" to all of our superheroes at the hospital. Bitter, sweet....sad, but positive. The birthday party was quite a celebration and quite an emotional day with a huge sigh of relief that we were able to celebrate with her.
Now, we are doing our best to return to a life of 'normalcy'. Our schedules and income have changed drastically in order to care for Mercy the way we feel she needs to be cared for. I recently returned to work one day a week and am trying to find my place in a job I worked very hard for over the last 11 years and feel like I am being muscled out of. The bills continue to find their way to the mail box from her first two surgeries, prior to her insurance coverage. It's amazing how a person can work their working years in life to get "ahead" and how quickly all that can be taken from them. But, this is not about a Mom's pity party, what's important is that Mercy is healthy, happy and living in a home of love, good vibes and happiness. The rest really doesn't matter....(at least this is what I keep telling myself ). And change, although uncomfortable, can sometimes bring bigger and better things. Let the universe unfold as it should.....
There is no way we will ever be able to thank the ones that truly supported us in this journey. We hope you know who you are, there are too many to mention here. Words seem to diminish the true feeling of gratitude we have for you all so with that being said, no matter how large or how small your support has been, we THANK YOU. With your help, we made it through.
Keep spreading the LOVE......
".......you came along with a raft and a song and I'm so glad you could make it....
with you by my side I might get back alive from my...............next Vacation" M.H.