Monday, March 12, 2012

Home again

We've been home from the hospital now for a week. Matthew is a superstar! The only glitch in the hospital was that after his dialysis catheter was placed and they started the first plasmpheresis, we realized that the catheter was not working as it should. We had to go back to interventional radiology the next morning to replace the catheter. Because interventional radiology uses nurses not anesthesologists to administer anesthesia, they were not able to use Matthew's "anesthesia cocktail" which has been working for him with minimal side effects. The radiologist assured me that Matthew would be fine waking up from the anesthesia they were using as long as he was not woken prematurely. This was far from the case. Just like in times past, Matthew woke up thrashing with his post anesthesia psychosis and was like that for the remainder of the day. I absolutely was not going to allow them to use the same anesthesia they had used the day previous to re-do the catheter the next morning. Everybody in the CICU was completely on board with me after seeing him that first day. So, the CICU organized their own team to come down with us to radiology so that they could give him his propaphol and phentanyl- and guess what?? He woke up great with no side effects!! Matthew spent three days in the ICU and then moved to the floor for the remaining 9 days. He tolerated his treatments well. In typical Matthew fashion he won the hearts of all the hospital staff who dealt with him.

On our last day in the hospital, Matthew got an IV/IG infusion and then got his first dose of Bordezomib. Plasmapheresis is an acute way to remove the antibodies from Matthew's blood. Bordezomib is used to stop the production of memory cells that are made which are the culprit for antibody mediated rejection. Matthew did two doses of the four doses of Bordezomib before plasmapheresis, but when his heart function was declining Matthew's doctors decided that we needed to get a better handle on his rejection episode. This was why we proceeded with plasmapheresis. Unfortunately for Matthew, we had to start from the beginning with the Bordezomib infusions. Bordezomib is a chemotherapy drug used to treat multiple myeloma. They are just starting to use it in cases like Matthew's. Primary Children's hospital does not even have the drug in stock and they have to order it from the Huntsman Cancer Institute every time Matthew uses it. In fact, the nurses in the Hematology/ Oncology clinic have never heard of it. Bordezomib makes Matthew really sick!! Last Sunday, he was throwing up everything we tried to feed him through his G-tube no matter how slow the rate. He could not tolerate anything. He was admitted to the Rapid treatment unit for the day to get labs drawn and to get a saline infusion. They started Zofran which seems to have helped him quite a bit. We have been giving him that consistantly since then. We have gradually been increasing his rate and he seems to be tolerating his Nutren jr. a little better now. He's still behind on his fluids, but we are doing the best we can to give him the nutrition and calories that he needs. He will not eat anything by mouth and pretty much lays on the couch or a bed all day watching tv or playing games. He does not have energy to do anything more than this each day. It breaks my heart to see Matthew this way. He reminds me of what I would have imagined a little boy on chemotherapy to look and act like (minus the bald head of course). We are half way done with infusions!! I can't wait to be done. You have no idea how hard it is for me to drive him to his infusions knowing what the drug will do to him. I always drive there tearfully wondering if what I'm doing is really the best thing for him. I pray that these next two doses can go well and that we can be done with Bordezomib forever!

When I was in the hospital I met with "Rainbow Kids" which is Primary Children's palliative care team. There were 8 members on the team and one of me (Matt had to work). The Rainbow kids team was so wonderful! It was a hard meeting, nonetheless. We talked about what life sustaining treatment we wanted for Matthew and what would we want if Matthew were to code at home and the paramedics showed up, etc. This was not an easy discussion. I know Matthew is sick. I know that these are discussions Matt and I have had in the past. Talking about what decisions YOU as a mother would make if you had the choice in deciding if Matthew would live or if you would let him die is incredibly emotional and difficult. I know we are doing all we can for Matthew, but part of me is still holding onto the hope that he can live a somewhat healthy and normal life after his next transplant. Maybe my hopes for him are unrealistic, but I'm his mother and I just can't imagine the "other" scenario yet. I certainly hope and pray that it is a decision that I will never have to make for him. Seeing him as sick as he's been this last week also makes me realize that I don't want him to suffer like this anymore. He has fought so hard for four years and he's done it with a happy, sweet temperment. He's been through a lot these past six months especially and I see how it is getting old for him. I love this little boy with all my heart. I only want what is best for him. Usually he is so happy and full of life that it is impossible for me to give up on him. I pray that I can have the strength and inspiration I will need to make difficult decisions in the future.

So what's next? Matthew finishes his infusions, he will continue to be followed by cardiology/ hematology twice a week and then he will have a heart cath on March 26th. He's still on the heart transplant list. As far as I know, he could still get a heart whenever a match comes available. I know that this will take a long time and it's the last thing on my mind in regards to Matthew right now. I feel like I'm focused on the current hurdle and then we'll go from there.

I try to enjoy each day, each experience I have with Matthew. He is a special boy. Joshua had the opportunity to bear his testimony at our stake conference last week. He said that whether Matthew is on earth or in heaven he will go where he is needed to build Heavenly Father's kingdom. I know that Joshua is right, I just wish I knew when and where he was needed. Maybe then I could deal with things easier.... maybe!!


  1. Chrissy -- I'm only responding so that you know this blog is being followed religiously, but I hope that today's texts were somehow helpful for you. I'm sorry where I fall short as a support for you. Whatever decisions you do make in the near future, pleasepleaseplease do not second guess yourself. Do not torture yourself. You will make hard decisions when you are pushed to, and you will make the right ones. Trust in that.

    We all hope he pulls off another razzle-dazzle. We all want him to get strong and healthy...and stay. If not, please accept that it's God's will. You've done all that you can...and you were right every step of the way.



  2. Chrissy, my heart aches for you and your family. I think of you all so often. I can't imagine the situation you are in and the decisions you have to make everyday. Matthew is a little trooper... I am so sorry he has to go through this. Poor little guy. Just know that you are doing what you can for him, and making the best decisions you know how, and that's enough. You are such a good mama, and a truly amazing woman. Keep trusting in yourself and in Heavenly Father. And know that you have more support than you know! Thinking and praying for you always...

  3. Chrissy, another Zofran success :). I am so glad that it helps alleviate some of the nausea. Matthew is our little hero. I still remember so vividly a conversation we had in your new minivan after leaving RUSH one night. I had just met Matthew for the first time. You and Matt were being pressured into difficult life-saving decisions. I know without a doubt that the decisions that you made back then were perfect! I know that the decisions you make now are perfect as well. You are doing a phenomenal job as his mother. We are praying for you.