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.

Saturday, March 17, 2012

Heart failure and a 1A status

What a week!! Whenever I feel like things can't possibly get worse, they do! I'm exhausted so I'm going to write a quick update. Last Tuesday we were scheduled to get a chemotherapy infusion. We had done labs in the morning and were waiting in Oncology's infusion center when Dr E came in to review the labs. Although Matthew had been seen by cardiology twice the previous week, Dr E had not seen him for ten days so she wanted to check in on him real quick. She took one look at him and said "He's not getting his infusion today!" She ordered an echo and an ECG and started his paperwork for a direct admission to the CICU. Matthew's echo looked fine, but once we got to the ICU his heart looked huge on chest X-ray and his lungs showed pulmonary edema. They started Matthew on a milrinone drip and watched him in the CICU for three days. Now we are on the floor. Matthew got a PICC line placed and we are hoping to get out of prison soon. Matthew's hemoglobin and hematocrit have been low and his BNP is really high. Matthew's limbs have been "hot" and he feels like "needles" are stuck in his fingers. As it turns out, he's having a lot of non-specific and very specific pain related to peripheral neuropathy which he developed as a side effect from the Bordezomib. It was a known risk, but we really had no other choice in order for us to get on top of Matthew's rejection. I hope and pray that this is something that will go away!!! He is now on neurontin (a seizure medication- why not? That makes the grand daily med total for Matthew 13!!!) We still have some issues to work out before being discharged, but our goal is to get Matthew home on 24/7 milrinone. The bad news....Matthew is in heart failure. The good news....Matthew's heart transplant status has been changed to a 1A from a 2.
My head is still reeling. I think I may be in a little shock. Things in the "heart" world always happen much differently than expected.
Thank you all for your love and support. We could NEVER do this without you!! Our ward and neighbors have been awesome! My parents and Matt's parents have been helping non stop. We have been blessed and we are grateful!!

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!!