Saturday, May 22, 2010

He told us that the operation had been a success and that our timing in having the transplant completed was perfect. Matthew's heart was about three times bigger then it should have been and very ischemic. He said that Matthew was a step away from falling off the cliff. We were also lucky in the fact that the transplanted heart fit just perfectly inside Matthew's chest. They didn't need to leave his chest open or anything and were able to close his skin without problem. The surgeon also showed us Matthew's original heart. Somewhat morbid and sad. It has kept him alive for two years and I am so thankful for that.

Thirty minutes after he left us we were able to go and see Matthew. Seeing your child lifeless and hooked up to a breathing machine is something I hope most of you never have to witness. In expecting the worst, he actually looked better than the last time he came out of surgery. He was alive. His new heart was beating, and he wasn't on so much support that I was in fear that the heart they gave him was a bad one. The tubes were of course coming out of everywhere: 2 tube around his lungs, 1 tube around his heart, 1 IV going directly into his new heart's right atrium, 3 peripheral IV's, 1 central line, a breathing tube in his mouth, a foley catheter to drain his urine, and an arterial line in his wrist. I guess he didn't have any tubes in his ears or belly button . . .

The next 18 hours were pretty easy. He was sedated and calm. It was Thursday afternoon now and they were weaning the sedation. Just so you all know, Matthew is generally the sweetest, easiest going kid in the world. But coming out of drunkenness he doesn't do well. The pulled the breathing tube out and it seemed like all heck broke lose. He was trying to pull at every line, he was trying to roll over, he was a hazard to himself. They tried everything they could to load him up with sedation without knocking out his ability to breath. It took four of us to hold him down for five hours until they figured out that the meds they were giving him were just making him more delirious. In addition to all of this, Matthew was having difficulty keeping his airway open after they took the breathing tube out and I had to hold his airway open with jaw thrusts for about 4 hours. It was very very frustrating. Our poor nurse earned her money and then some during that shift. He finally calmed down by 11:30 pm and we were able to get a little sleep. Once again, thank you to all of the angels that have been hear with us.

Friday was a step back because on their routine daily echos they saw a mass in his left atrium. They had seen it the day before but they noticed it was enlarging. He was also holding his urine so the foley catheter that had come out on Thursday had to be put back in, not by the nurse . . . oh no, Matthew is much more difficult than that, the urologist had to come in and put in a special curved foley. Dr. Kaza also came in and said that we were heading back to the OR because he wasn't sure what the mass was. Matthew was finally awake, alert, and requesting: McQueen Juice and Daddy's juice! He wasn't ornery and his hallucinations had gone away. Poof all of that went away. We were now facing another surgery, another 2 day set back, more risk for infection, etc.

The second open heart surgery went well. It was fast and what they found was that it was not an invaginated atrial appendage or a clot, it was fluid in the posterior pericardial sack that was pressing on the heart and it was a suture line that was a little more prominent than what they are normally used to. It was a long day and I had some words with the Dr. Kaza that I wish I could take back now, but as a father (and a physician) I had some really tough questions for him and the cardiologists. I guess that underlying all of this is my skepticism that he really needed a heart transplant. I am still trying to figure out why that bothers me as much as it does. I am not ungrateful for the heart but a heart transplant is not a cure. It is another form of palliation with many more risks and many inherent complications. I can't wait for the day when he can come home. I love hospitals but they are the scariest places in the world. . .and I work in one. I think I offended the transplant surgeon but I was acting as a father and a frustrated one at that. In the depths of my heart I really do appreciate everything that he has done for us.

Again Matthew was sedate, lined up, and on a breathing machine. We get to go through all of the first two post op days again. We have narrowed some of his delirium down to benadryl (so he won't ever be getting that again) and we have switched to synthetic opiates because they have less breakdown products that are pyschotrophic.

It is now Saturday morning and we are back at it again. Our bishop came to the rescue and brought his camper up for us to sleep in. We are right next to the hospital and less than 30 seconds from Matthew's room. I got a great night sleep last night (the night before I was on a hard floor in a sleeping bag . . .I guess I am looking for a little sympathy here). To have a place to go and relax is wonderful. It was a design flaw to build a 42 bed ICU with only six parent sleep rooms. If I were a philanthropist I would use my money to 1) first try to buy the Kirtland Temple from the RLDS and 2)Build Utah a new state of the art children's hospital where every ICU bed had a parent room with it. Who wants to ever leave their children when they are in the icu?

I just spoke with Dr. Kaza and the plan for today is to pull the breathing tube out, wake him up again, start feeding him (It has been 3 and 1/2 days since he ate), adjust his PICC line, and hope that we don't have another day of "Wrestlmania" with a two year old. Tomorrow he said that we would be pulling out his chest and mediastinal drains as well as that hated right atrial line.

As for Chrissy and I, we are surviving. We have been here before and we would do it again for any of our children. For one day at home playing with trains and Misty (the dog) it will be worth it. We are so thankful (cannot say enough) about our parents, family, partners, ward, work, and our angels on the other side (Anne we know you are on assignment here). Thank you sooo much.


  1. I was in tears when I heard that the second surgery was needed. I cannot even imagine having to go through those first few days all over again. We are rooting for those little accomplishments...extubation, chest tubes out, and eventually the return of his gorgeous smile. You, Chrissy, and baby Matthew are so incredible and will get through this. We wish we could do more. I empathize with wondering why the PICUs do not have better accomodations for parents...The one at UNC only had a couple of rocking chairs. Hurray for your bishop! You are in our continued thoughts and prayers.

  2. Matt, in your own short lives, you and Chrissy have gone above and beyond your callings here on earth. May God comfort you & coddle you as much as you've ever done, or will ever do, for your children. I hope there is a Lightning McQueen celebration on tap for our boy. We all love him so much.

    Thank you, Aunt Ann, for being with your family when so many of us are way too far away.

  3. One more thing...I think it is amazing that you can ask questions and be "in the know" for Matthew. Cam and I were the annoying parents that asked questions, and I'm pretty sure there was a hate-squad at the nurses station when Erica left...but I'm sure she had much better care and a quicker discharge. You are Matthew's best advocates and it is so important that you were able to converse with his surgeon/ medical team.

  4. I can't get you guys off my mind... I must have checked your blog about a thousand times today. I'm glad to hear that the second surgery went well... Good luck with the next few days... I'm sorry you have to re-do all of that nightmare. You & Chrissy are some of the most amazing parents, and people, we've ever known. And although I can't empathize with what you're going through, I hope you know that we are hoping and praying for your continued strength and comfort. All our love!

  5. Oh, and way to go Bishop! That is awesome. It's always nice to have the support of a great Ward.

  6. We are thinking of you and little Matthew is always in our prayer's. The kids ask about him constantly. We love you!

    Chad and Jill