Friday, October 28, 2011

Disneyworld was amazing!! I cannot thank the Make-A-Wish foundation enough for arranging the perfect dream vacation for Matthew! It could not have been more perfect- the weather, the kids loving it, and the overall experience. My favorite day was our first day in Florida. We went to Hollywood studios to meet Lightning Mcqueen and Mickey Mouse- Matthew's two wishes. I wish you could have seen Matthew's face in complete awe when he saw Mcqueen and Mater-he danced, sang, and hugged and kissed Mcqueen and Mater. I think he would have been happy staying there all day long. We then saw Mcqueen featured in a stunt show which Matthew loved. Next, we went and saw the Mickey Mouse Clubhouse live. Matthew was is heaven!! I will never forget that day!!! Matt and I promised we would not talk about anything work or medical related. It's amazing how renewing it is to take a mental break from those kinds of worries for a week! Our entire family had a great time together and we will always cherish this passed week!

We got home late on the 24th and Matthew got his dialysis catheter placed the next morning and was admitted to the cardiac ICU. He had a rough time coming out of sedation. He was not cooperative and was super fiesty. They had to sedate him again to complete his echo and then again that same day to do the plasmapheresis treatment. Everything went well in terms of Matthew tolerating the procedure.

Matthew was transferred out of the CICU and is now on the floor until next Thursday November 2nd. The plan for him is to do these plasma exchange treatments every other day for the next week. The dialysis machine is huge! It's quite the process!! It takes an hour just to get the machine ready. They take out Matthew's plasma and trade it for fresh frozen plasma or albumin in hopes that by taking out the antibodies that tend to attack Matthew's heart, his coronary artery disease may improve. We won't know if these treatments are effective until we do Matthew's next cardiac catheterization which is going to be done in about 5 weeks. So, the plan until then is to finish plasma exchange this next week. Then, Matthew will be admitted to the hospital for one day each week for three consecutive weeks to receive IVIG and Rituxan treatments to help protect Matthew from EBV and CMV and other viruses that tend to be a problem for transplant/ immune suppressed patients.

Best case scenario will be that these treatments helped reverse the damage caused by the coronary artery disease. Worst case scenario would be that at our next cath we would see no improvement with the CAD. If this is the case, Matthew would need to be re-listed for another heart and we'd start this process all over again. Matt and I have mixed feelings about this option. Matthew has been through A LOT this last year and a half. We have lots of questions that need to be answered if and when we get to that point. Right now we are trying to be optimistic and we are trying to cross bridges when and if necessary. Trying to process all of this at once is too hard and overwhelming.

Today, Matthew is happy and seems to be healthy. You would never know his sweet little body is as sick as it is! Dr. Everitt came by today and said that Matthew is getting a reputation all over the hospital as being the cutest, happiest patient in the hospital. That's my Matthew!! He's always so sweet, and so lovable to anybody who knows him!

We appreciate all of the prayers and support from all of you! Please keep them coming!! There are definitely good and bad days. The strength that comes from your prayers is what keeps us going on the bad days for sure.


  1. Chrissy - were you able to take video or pix of the meeting with McQueen? I so want to see that.

    No matter what happens, Chrissy, please absorb the fact that Matthew is a happy, happy guy. We all pray, hope, plead and yearn for the best while we fear with you as we all prepare for the potential worst. But, either way, even with the trials and the pain, that child is full of joy. What more can an individual want out of life? I hope he experiences years and years more of fun. But, right now, he thinks life is good just about the way it is. Let that be your comfort...and maybe even your bliss.

    When all is said and done, though, I still believe in this kid. Hang in there. xoxox M

  2. Good luck with everything! I'm just just trying to put myself in his shoes & as an adult that would be hard an scary. I definitely wouldn't have a good reputation at the hospital like Matthew does. What an amazIng & inspiring little boy with a great attitude! Next time my boys get whiney, I'm going to tell them about strong Matthew!

  3. I so glad that your Disneyland was amazing!! I have been praying that it would be just that. I love reading your posts and keeping up with you. Your family has a special place in my heart. I will keep the prayers coming for sure.

  4. What a dream vacation! I was thinking of your family the whole week. So magical.
    I can't even imagine seeing sweet Matthew attached to a dialysis machine...those things are huge like you said. Matthew is my hero :).
    Teresa Walker