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.

Sunday, February 12, 2012

More of the same...

I really was hoping there would be no news to share until the "media fast" was over in March. Unfortunately, this is not the case. Last Thursday was another routine cardiology appointment. On Matthew's echocardiogram it showed that his heart function was down and that his mitral valve regurgitation was worse than a few weeks earlier. Matthew's doctors were thinking that these changes could be attributed to either rejection or a progression of the coronary artery disease. Either way, we needed to do a heart biopsy to figure out what was going on. So, we went in for a biopsy on Friday morning. Matthew did awesome!! We were in and out of the cath lab and same day surgery in a jiffy. The pathologist was in meetings all afternoon so we went home to wait for results. We got word around 7:00 pm that Matthew was indeed in rejection-- dang it!! He's having antibody mediated rejection again (the same kind that caused the coronary artery disease. The same kind that put us in the hospital for 10 days doing plasmapheresis :() We went to the hospital for Matthew to be admitted for a 24 hour treatment of IVIG and a new drug called Bordezomib. He handled all of these IV drugs great and we got home last night.

The good news is that we didn't have to take him off the heart transplant list because he is not having any cellular rejection. More good news is that we are not having to do more plasmapheresis....yet! The bad news is that we get to spend more time on the hematology/ oncology floor to get his "chemotherapy" infusions of three more doses of Bordezomib. Bordezomib is a chemotherapy drug used to treat multiple myeloma. Matthew does not have multiple myeloma, but we are hoping the drug will target his plasma cells and might be helpful in treating Matthew's type of rejection.

We are grateful to be home today! We'll just take one day at a time and pray for control of this rejection episode. Taking a break from movies, games, and tv has been a big blessing in our home. It removes a lot of distractions. Josh, Luke, and Matthew have had a lot of creative play time with one another which I LOVE! We will continue to keep you in the loop.

Wednesday, February 1, 2012

Hurry Up and Wait

Here we go... it's official- Matthew is on the heart transplant list again!! Since my last post things have been crazy busy! Once we did more bloodwork and testing we discovered that Matthew had a false positive read for the CMV virus the first time he was tested. What a HUGE relief!! This meant that there would be no set backs or delays in the process to re-list Matthew. I had two trips to PCMC last week and one appointment with Matthew's pediatrician. We got all the meetings completed, bloodwork done, and papers signed. We got word yesterday that our insurance approved Matthew and that he is now officially on the list as a status two.

Why is this so exciting? I keep asking myself that today! He seems healthy. He's definitely happy. I remember the last transplant all too clearly. If only his outside appearance could tell the whole story! I remember thinking similar thoughts two years ago. I was skeptical about the whole transplant thing. We got "the call" 3 1/2 weeks after his listing. Driving to the hospital that night for surgery was one of the hardest things I've ever had to do. Come to find out, after the transplant surgery, Matthew's heart was much worse than we expected. The surgeon said Matthew's heart was really ischemic probably from the heart attacks he'd most likely been having. The surgeon said that Matthew wouldn't have had much more time without a new heart. And so with all of that fresh on my mind, we wait. I know it's the right thing to do. It just doesn't make any of this easier!

Having your son on the heart transplant list is a wierd thing. I've never felt so much conflict of emotion. Here I am every day and night praying for a miracle for my own son. Immediately after asking for a miracle, I feel so much guilt. Guilt because I know that in order for Matthew to experience a miracle, some other mother has to experience heartache. I really struggled with this after Matthew's last transplant. In the end, I guess I have realized more than ever that God's will will be done. I'm not in control- God is! What ever is meant to be will be. Coming to terms with that is a bittersweet realization. It's hard to apply that principle to your own son's life.

A lot of people ask how the transplant process works. The country is divided into regions depending on distance. Time is of the essence in the transplant world. Utah is in Region 1 with California, Nevada, Arizona,& New Mexico. Each transplant candidate is given a status. 1A being a child in the hospital on an IV or some life saving device, 1B was Matthew's status last time (he was a failure to thrive-- his gastric tube and night time nutrition for the past 18 months has helped his "thriving" quite a bit :)) then there's a status 2- Matthew's status. Matthew is also O type blood which is the universal donor, but not the universal recipient. He has to get an O heart. Also, he has a lot of antibodies we are dealing with now that we were not dealing with before. We have been told that Matthew is only eligible for 33% of the hearts within his blood type based on his antibodies. To say the least, we are not anticipating a 3 1/2 week wait this time. We are thinking he will be on the list for awhile.

Anyhow, onto brighter topics. Matthew turned 4!!!!! Every birthday we celebrate with Matthew feels like a huge success to me! Thank you- so many of you who were so wonderful to him on his birthday. Matthew definitely felt the love of so many that day. Matthew wanted a bunk bed for his birthday. You see, Josh and Luke have been sharing Luke's bunk bed for awhile. The rule in our house has always been that you have to be four before you can have a "sleepover." Matthew wanted a bunk bed to sleep 5- so that all of us could sleep in Matthew's room on sleepover nights. Because they don't make bunkbeds to sleep five (and Matthew's room is way too small for that anyway :)), we found a bunk bed trundle bed that sleeps three- perfect to fit both of his brothers and himself. Matthew has been SO happy hosting sleepovers every night for any brother who is up for it. I love to watch Matthew's relationship with his brothers develop. Matthew and Luke have become good little buddies.

So, life is good. We continue to enjoy each day and every moment as a family. Joshua's school class is participating in a "media fast" this month. Our entire family is not suppose to watch tv, movies, listen to music other than classical music, do facebook or social networking, or play any gaming device. I guess blogging might be considered social networking-- oops! I consider it more of journaling. Oh, well! Anyhow, today was the first day. It's a blessing to remove some of these distractions from our home so that we can enjoy quality time together. I am loving it already- the timing couldn't be better. So, unless something BIG happens, I probably won't blog until March. We love you all and appreciate your continued support.