Saturday, November 5, 2011

Home again!

Matthew got home from the hospital on Thursday, November 3rd. It was SO nice to get him home! 10 days in the hospital with a three year old is exhausting! Especially when he is immune suppressed and cannot participate in a lot of the activities the hospital provides for hospitalized children. His hospital room quickly transformed into a a playroom. We brought suitcases of toys and good friends and aunts and uncles visited and brought him other fun things to keep him busy! Thank you so much- all of you!! The highlight of the stay for Matthew was a whoopie cushion brought by his Aunt Ashley and Uncle Ben. Matthew became known as the prankster who played tricks on all the nurses, doctors, and tech's. Once again, everybody who spent even a minute with Matthew learned to love him quickly! The cleaning lady, foodservice delivery ladies, nurses, and everybody on the floor loved to be around Matthew's charming and fun personality. It is effortless to love Matthew. This gift evidenced itself once again during our hospital stay!

He tolerated the five treatments of plasmapheresis well. "Napoleon" was the name of the dialysis machine that would visit Matthew every other day to filter out Matthew's plasma. It was wierd seeing this machine in action. I tried not to think about too many details during the process. Watching his blood being drained from his body, run through a filter and then watching the fresh frozen plasma and albumen being added back into his blood was a little intense. I'm glad it's over! We won't know if these treatments were effective until his next heart catheterization and biospy. This is scheduled for December 1st, however, it could be moved up if cardiology feels a need to do so.

Until December 1st, Matthew will have weekly appointments and Rotuximab infusions every Tuesday. These will be VERY long days!! They start with a blood draw and IV placement in the early morning following by an echocardiogram, usually and ECG, and cardiology doctor appointments. Then we will go upstairs to the oncology floor to their infusion clinic to receive the Rotuximab which I think will take about 2 hours or maybe longer. As it was explanined to me, these infusion treatments are necessary to give back some very specific antibodies that were taken away during the plasmapheresis process. Cardiology wants Matthew to have the good antibodies that will help fight off things like CMV and EBV so that those viruses don't become an issue later on.

Matt and I met with the two transplant cardiologists, the social worker, one of the transplant nurses, and a hospice nurse yesterday in a question/answer session to help us start getting prepared for decisions that will need to be made in the future. The information we received was not surprising, by any means, but was still hard to hear nonetheless. The research shows that transplant recipients with coronary artery disease will not survive two years out from diagnosis. Coronary artery disease is responsible for 50% of re-transplants and is the number one killer of transplant patients who are at least one year out from transplant. We are not sure how quickly this disease is progressing in Matthew, but Dr. Everitt told us that she would categorize his CAD as "severe" and he didn't have any signs of it in April. Our assumption is that it is progressing quickly. We are hopeful that the plasmapheresis treatments slowed, or maybe even reversed some of the damage already done. However, even as a best case scenario, plasmapheresis is not a cure for CAD. It would only buy us a little more time- how much time? We are not sure. If at his heart cath things do not look improved, we will re-list him for another heart. I think Matt and I feel like we need to move forward with treatment as long as Matthew is acting healthy and is happy during the process. Our decision can always change. The statistics for a re-transplant are not very encouraging either. There are only 39 patients internationally who have been in Matthew's situation- less than three years out from transplant and in need of a new heart. Whether or not he will get a new heart is a big question. Whereas before Matthew was eligible for 75% of hearts in his blood type, because of the antibodies Matthew has developed over the passed year and a half, Matthew is now only eligible 33% of hearts within his blood type. The statistics among those 39 patients who have been involved in the study (who actually received a 2nd heart), 80% lived beyond the first year and only 50% lived to five years. There's not much data out there beyond that because re-transplant is very new in children. Have I lost you yet? I know a lot of numbers that don't mean much unless you stew over them day and night feeling totally responsible for making the right decision for your child!

So, there you have it! The update. It really is much easier to update everybody this way. It's hard to talk about these things. Matthew is getting older and is understanding more and more. He's always with me making it harder for me to talk to everybody on the phone for updates. This is a tricky subject- life and death when it is so personal and when children are involved. I would ask that you all please be sensitive in your conversations around Joshua and Luke. They are aware of the situation. We have tried to be very open and honest with them always. In fact, when we were in Florida we went to the Orlando temple grounds on Sunday and had a family devotional where we discussed what was happening and the reasons why we were in Florida as a family to enjoy time with each other. It is not easy. Obviously Joshua understands the most. I have had some very difficult and tearful conversations with him. I would hate to have any of my children hear discussions being had by other adults about the reality of their little brother! I would much rather they hear things from me. I appreciate your understanding of this.

Amidst all of this, we really do feel blessed! We have a wonderful family and we have been given the gift of time with Matthew. I can honestly say without any regrets, that I would not change a thing! I have tried to love him and enjoy him as much as I can every day. We have tried to provide family opportunities where we can build positive memories. We have tried to have a home where love can be felt by all of our children. Matthew is happy and he knows, without question, that he is loved!

Hard times, lie ahead. I don't know if I'm ready for whatever is going to happen. Matt and I will fight for Matthew until we feel like it's time for him to go home. I pray for spiritual strength for myself and my entire family. I find myself starting to turn things over to the Lord more and try to have faith in his plan for Matthew! I'm not sure what this means. Please keep the prayers coming! We need them now, more than ever!!


  1. I feel so inadequate in all of this, but still feel you need to hear me and read you know how much you are loved and supported, and how much I want to help heal you.

    Remember what you said to me in my mother's death-room? You said that while you came to say goodbye to her, you were specifically there for ME. I want you to know that I will always think positively about what is going on with Matthew and I will cheer him on...and if things don't turn out the way we all want them to, I will be there for YOU. Either way - if he has a long life full of trials or one that is drawing to a close - I love him, but it's YOU I am here for.

    Do I make sense? BTW - I did follow everything you wrote. It was very clear, but still hard to read. If you need a call or a visit, let me know.


  2. So sorry you have to go through this and make these difficult decisions. We understand much of how you feel-especially the challenges about knowing what to share with your kids and how. Please know that we are praying with understanding and keep us informed if there is anything we can do to help.

    Amy (HopeKids)

  3. I don't even know what to say Chrissy... Your faith is astounding. You are such an example to me, and your family is so special. I can't even imagine making these decisions and going through the things that you are going through. Please know that you are all so loved, and we are constantly praying for you and aware of your situation.

  4. Chrissy,
    Thank you so much for the update. I empathize with your description of Napoleon and its job description after working in a dialysis guys are champs! I am praying that the treatments were a success. Although far away, I am always thinking of you, Matthew, and your family. We are fasting, praying, and many times brought to tears in your behalf. Your endurance and faith is an inspiration, and has strengthened me. You are an incredible mother. Thanks again!