Catching Up, Part I

Wow! I can't believe it's been 7 months since I posted anything.  My apologies for that.  It certainly hasn't been for lack of information, but more just lack of discipline on my part.  I will start catching up in segments, since I'm sure no one wants to sit and read a 10 page blog all at once.

Let's go back to June 2012.  We made our big move to Houston in the middle of June and began to get settled in right away with the much appreciated help and support of my parents.  Kemarah was officially listed for cardiac transplantation on June 28, 2012 as a status 2 patient.  Status is important on the UNOS (United Network for Organ Sharing) listing as it can be a great indicator in how long you will actually be waiting.  There are 4 status categories used in UNOS:

Status 7 patients are inactive for some reason, meaning if they were to have an organ match, they would not be able to receive it at that time for some reason.

Status 1A patients must stay in the hospital on IV drugs, a heart assist device, a ventilator, or have a life expectancy of less than a week without transplant. For patients under 18 years of age, the indicators for 1A status may be slightly less severe.  1A patients have the highest priority on the transplant list.

Status 1B patients are not confined to the hospital, but require a heart assist device or some kind of continuous IV meds at home.  1B patients have the second highest priority on the transplant list.

Status 2 patients are basically any other active candidates that don't meet the criteria for 1A or 1B status.

We began our wait at the end of June in a status 2.  We were hopeful to stay that way for our entire wait, as it seemed like the criteria to have Kemarah's status upgraded would mean that she would be very ill.  We were perfectly content to keep our little girl at home, even if that meant we had to wait a little bit longer.

Kemarah's doctors agreed that they would see her once a month until we got "the call" or until her condition progressed to a point that they thought she needed to be seen more often.  So we went on our way--getting settled into our new apartment, learning the ropes of our new city, checking out things like the zoo, the aquarium, and of course, my favorite, the restaurants.

Kemarah went back to clinic the last week of July for her regular monthly appointment.  Everything looked "about the same" they said and sent us on our way with a 24 hour holter monitor that would record her heart rhythms for 24 hours.  We just had to return it the next day to be read and kept in her records.  We had done these holter monitors periodically in the past, so we really thought nothing of it.  We brought it back the next day, which happened to be a Friday, and went ahead and enjoyed our weekend.

It was the following Tuesday as we were sitting down to eat at one of Kemarah's favorite spaghetti joints that we got a call from our transplant coordinator, Kim.  She explained to me that Kemarah's holter report has shown some concerning rhythms and that we needed to bring her in to be admitted right away.  So we quickly gathered up our freshly served spaghetti and meatballs, went by the apartment so that I could throw some stuff together for an overnight stay, and headed to Texas Children's Hospital for the REAL beginning of our journey to a new heart.

The following link has lots of good info for transplant questions.  It's quite fascinating actually!

UNOS Info

                    

                                                                   

Up-Rooting

Hello Friends,
As I mentioned in my last blog, we are in fact moving to Houston, TX. At the most recent appointment in April, the doctors confirmed the state of Kemarah's sick heart and agreed that the only way to "heal" her would be to give her a new heart. After coming to grips with the fact that this is no cure at all, simply a new set of symptoms that will require new medications and a new way of life for those of us closest to her, I have become almost excited that we are finally moving forward with something. After more than a year of uncertainty, fear, anxiety, and many, many questions, I feel like we finally have some kind of solid answers. Although living with a transplanted organ will be a challenge, it will make my baby feel better, and for all intents and purposes she will be "normal" and able to do all the things a healthy little girl should be able to do.
I feel as though 2011 was the year that God felt I needed to learn just about every life lesson there is, and now, as we dive full-speed into 2012, I find myself challenged, once again, on very different levels. We will be moving to Houston in June. Kenya will (hopefully) be working full-time while we are there and I will be staying home with my 2 wonderful children. This in and of itself is a challenging concept for me to grasp. I have had a job since I was 16. The thought of staying home all day, in a city where I don't know anyone is a bit overwhelming. I wonder about my parenting skills. Will I be good at raising kids? Because, let's be honest, up til this point I've had a lot of help. My children have spent the majority of most days in someone else's care. Now that they are going to be 100% my responsibility everyday, I can only hope I don't mess them up! We are truly "up-rooting" our little family and sticking it right smack in the middle of everything new. We are very accustomed to having a large family support system just up the street, or right across town. As of June, our closest family will be on the other side of the very large state of Texas. I can't help but wonder what God has to show me over the course of the next year. What I want to say is, "Really, God! It wasn't enough to have us go through the process of major heart surgery on our soon-to-be 4 year-old daughter, but we also need to do it completely removed from all that is safe and familiar to us?" BUT...I refuse to let it beat me. I will not give in to fear, or uncertainty, or frustration. I know that the bigger the challenge placed in front of us, the bigger the opportunity for God to truly do some amazing things in our lives. So, hopefully, 2012 will be the year of new hearts...not only for Kemarah, but for all of us as we witness the amazing works of God and grow closer to HIM.

Blessings

So much has happened since my last blog that I'm not even sure where to begin! After our two trips in December and January, we experienced such a huge outpouring of support and blessings from our family, friends, churches and other parts of the community. It never ceases to amaze me that people we barely know, or don't know at all, take an interest in our lives and in the life of my little baby girl. Kemarah is so blessed to have these people stepping up to offer prayers and support throughout this time in her life. Kemarah was granted a wish from the Make-a-Wish foundation and she wished to go to DisneyWorld and meet the Princesses. Unfortunately, her doctors won't release her to go right now, but after her surgery she will be able to go and have a magical time. Kemarah will be receiving a new heart. There really are no other options available to help her right now and her doctor doesn't want to keep pressing our luck with her current health status. So, we are looking at getting to Houston sometime over the summer so that she can be placed on the transplant list and we can "officially" begin our wait for a new, healthy heart. There are lots of details that are not in place yet, so stay tuned for more info in the future. For now, we love you and continue to appreciate your prayers and support!