Wednesday, February 22, 2012

Napoleon Part-deux

It has been a while since I have had the opportunity to comment on the blog. Mostly because my poor wife has had the task of taking care of Matthew's hospitalizations and doctor appointments. It was through the grace of one of my partners that I am even here today as we start another round of plasmapheresis in attempts to slow down the rejection that is sucking the life out of Matthew's heart. It is good for me to be here. There are two sides to medicine: the receiving end and the giving end. I spend most of my time on the latter or giving end. I prefer it that way. Its easier. I'm in the know and in control. No one stops me when I come into the icu, I don't get in trouble for using my cell phone, and don't have to bend over and pretend that I am happy when inside I am a wreck.

Back in October when they first diagnosed matthew's coronary artery disease one of the physicians pulled chrissy and I aside and told us that he would likely need a new heart within 18 months. We are starting to really see the reality of that statement. Since coming home from our make a wish trip it has been a steady down hill progression. We even see it at home with more cramps, vague aches and pains, fatigue, and failure to thrive. Don't get me wrong he is still happy and tries his best to be a four year old...his body just can't keep up with his mind. We don't need any echos to see it.

The bortezomib isn't working fast enough so in order to stave off yet another attack of rejection they have invited us back to the hospital for another ten days of sleepless nights, foreign beeps, and stress. We are honestly happy to do it if it means Matthew stays healthy for a bit longer but it isn't easy. Especially for my wife. I would like to think that it is easier for her because she doesn't spend every day in the icu like I do but I know that it isn't. When your son is the object of scrutiny it drains you of spirit, strength, and stamina.

We started at nine this morning with the placement of another dialysis line. He handled the line okay it's just the waking up part that continues to be a problem. He was so dystonic and agitated that in order for them to do the plasmapheresis they just ended up giving him more sedation.... He is still sleeping as I write. Let's pray that he wakes up more sanely this time and not like a cocaine junky looking for his next hit. Furthermore, his line isn't working very well which means more of the same for tomorrow as they exchange it for a larger one. I'm going to need some Ativan if this continues.

Matthew is a trooper though. He has so many friends here at the hospital it makes it almost bearable. We again can't thank our families, parents, friends, and doctors enough. A special thanks to my parents today who on their birthday are celebrating by bringing us lunch and watching Joshua and Luke.

I wish that I had the answers to all of this. I have prayed that our Heavenly father's will would be done but mostly I pray that Matthew won't have to suffer. I have seen too much of that already. Hope is not lost though and we continue to fight. I wish that I was independently wealthy and that i could spend all of my time making sure that he was well taken care of and happy. I know that he is surrounded by guardian angels and his time is not now. For that I am thankful.


  1. Matt and Crissy,
    Our thoughts and prayers are with you during this difficult, stressful, sleepless time. May you find peace and strength in our Heavenly Father's plan!
    Jason and Carrie (Morgan) Knapp

  2. Matt and Chrissy, We are always thinking of you. Thank you for being such incredible parents. I wish I could do more, and continue to pray for you.

  3. Matt - God hears all your prayers, because the Holy Spirit is inside of you. Know that you are understood from the inside, out and know that there is more strength in you than you realize...

    ...and when it is too hard to understand or to know or to realize anything because your baby is in pain, take the Ativan. In your case, it's totally appropriate.

    Love you & your family very, very much.


  4. Praying for your sweet Matthew and your family at this time. Praying his new heart comes just at the right time :-) We so understand the plasmapherisis and the rejection routine,,,,,it's not fun, but hopefully worth it! And Chrissy, it's was very nice to meet you. Someday we will get Mason and Matthew together to play!!!!

    Mason's Mommy :-)