Monday, March 26, 2012

Home sweet home

Matthew was discharged from the hospital last Tuesday. Once again we are home as a family and I LOVE it!! I got so sick of packing and unpacking that I packed a permanent bag that stays in the van until it's needed next. Hopefully the next time I use that suitcase will be when Matthew gets a new heart!

Matthew came home with a PICC line and 24/7 Milrinone. He is the cutest boy you've ever seen carrying his back pack around with his medicine and his medicine pump. Nothing slows him down or ruins his mood... not even heart failure and a 4 pound bag he has to carry with him everywhere he goes.

Matthew is MUCH better than he was prior to this last hospital admission. They call Milrinone the "wonder" drug. I would have to say that I agree! He is playful and happy. He does not lay on the bed and moan all day long. I am so glad to see such a great improvement in him already. As for his peripheral neuropathy, it is better too! The neurontin seems to be helping him quite a bit. We have begun the weaning process of his Neurontin to see if he still has symptoms without the drug or if his neuropathy was a temporary side effect of the Bordezomib. Please pray that these symptoms will not reappear with the weaning of the drug.

Cardiology has not given us a time frame at all for how long they are predicting it will be before Matthew gets another heart. Matthew's cardiologist said that "only God knows when that will be." We are not only matching his O blood type, we are also matching his antibodies. Last night Matt and I could not help ourselves and we got onto the UNOS website. From there we clicked on a link that posted all the information about who is currently listed and waiting for a heart. The website is really helpful because you can break it down to region or state, blood type, status, pediatric or adult, etc. Matthew is the only status 1A in Utah but there are currently 5 status 1A's with an O blood type waiting for a heart in region 5. Of those, Matthew is the only one who is waiting for his second heart. Dr. Everitt's prediction that only God will know when Matthew gets a heart is completely right on. This transplant is a lot more complicated than the first. We are matching so many antibodies along with his blood type that we were not matching the first time around. Sometimes I wonder if a match will ever really come along. Since Matthew has been sick I wonder if Matthew can hold out long enough to get "the perfect" match. Matthew's white count has also been really low. This really scares me because he now has a PICC line... and he's 4!!! Little 4 year old boys like to get dirty! I feel like I follow him around all day with alcohol swabs cleaning his tubing and as much of his line as I can to avoid an infection.

I also continue to struggle with the concept of transplant. I know what it will take for Matthew to receive a heart. It will require heart ache and loss from another mother. This is hard. As I pray, I find myself asking not for a tragedy to occur but for hearts to be softened in the event of a tragedy so that donors can be available. It took me a long time after Matthew's first transplant to get over the guilt of feeling like I caused a sweet little boy to die in order for Matthew to receive a heart. It was a conversation I had with my mother that made me realize that I had not caused this event. What happens will happen whether Matthew is on the transplant list or not. Only God knows what will happen to all of us in this life. Only He knows when our eartly mission is complete. So I can't feel guilt. I can only pray for comfort for so many of us in so many different but difficult situations. Then I wait, and have faith. Faith in God's plan for Matthew, whatever that plan is. Faith that everything is going to be okay, no matter how things turn out.

Through it all we continue to recognize that we have been so very blessed and that so many miracles have taken place in Matthew's lifetime. We truly are humbled and grateful for the many blessings which we have received.


  1. So grateful for the progress Matthew has made and that he is home. We are praying for him and his perfect heart. XOXOXO

  2. You are all in my prayers daily.
    Love to each of you,
    Lynn Lonsdale