Friday, October 28, 2011

Disneyworld was amazing!! I cannot thank the Make-A-Wish foundation enough for arranging the perfect dream vacation for Matthew! It could not have been more perfect- the weather, the kids loving it, and the overall experience. My favorite day was our first day in Florida. We went to Hollywood studios to meet Lightning Mcqueen and Mickey Mouse- Matthew's two wishes. I wish you could have seen Matthew's face in complete awe when he saw Mcqueen and Mater-he danced, sang, and hugged and kissed Mcqueen and Mater. I think he would have been happy staying there all day long. We then saw Mcqueen featured in a stunt show which Matthew loved. Next, we went and saw the Mickey Mouse Clubhouse live. Matthew was is heaven!! I will never forget that day!!! Matt and I promised we would not talk about anything work or medical related. It's amazing how renewing it is to take a mental break from those kinds of worries for a week! Our entire family had a great time together and we will always cherish this passed week!

We got home late on the 24th and Matthew got his dialysis catheter placed the next morning and was admitted to the cardiac ICU. He had a rough time coming out of sedation. He was not cooperative and was super fiesty. They had to sedate him again to complete his echo and then again that same day to do the plasmapheresis treatment. Everything went well in terms of Matthew tolerating the procedure.

Matthew was transferred out of the CICU and is now on the floor until next Thursday November 2nd. The plan for him is to do these plasma exchange treatments every other day for the next week. The dialysis machine is huge! It's quite the process!! It takes an hour just to get the machine ready. They take out Matthew's plasma and trade it for fresh frozen plasma or albumin in hopes that by taking out the antibodies that tend to attack Matthew's heart, his coronary artery disease may improve. We won't know if these treatments are effective until we do Matthew's next cardiac catheterization which is going to be done in about 5 weeks. So, the plan until then is to finish plasma exchange this next week. Then, Matthew will be admitted to the hospital for one day each week for three consecutive weeks to receive IVIG and Rituxan treatments to help protect Matthew from EBV and CMV and other viruses that tend to be a problem for transplant/ immune suppressed patients.

Best case scenario will be that these treatments helped reverse the damage caused by the coronary artery disease. Worst case scenario would be that at our next cath we would see no improvement with the CAD. If this is the case, Matthew would need to be re-listed for another heart and we'd start this process all over again. Matt and I have mixed feelings about this option. Matthew has been through A LOT this last year and a half. We have lots of questions that need to be answered if and when we get to that point. Right now we are trying to be optimistic and we are trying to cross bridges when and if necessary. Trying to process all of this at once is too hard and overwhelming.

Today, Matthew is happy and seems to be healthy. You would never know his sweet little body is as sick as it is! Dr. Everitt came by today and said that Matthew is getting a reputation all over the hospital as being the cutest, happiest patient in the hospital. That's my Matthew!! He's always so sweet, and so lovable to anybody who knows him!

We appreciate all of the prayers and support from all of you! Please keep them coming!! There are definitely good and bad days. The strength that comes from your prayers is what keeps us going on the bad days for sure.

Wednesday, October 12, 2011

Whirlwind of a week...

Has it really only been three days since my last post??? It feels like an eternity! I am grateful, more than ever, for your continued love and support this week! I feel strength from your prayers and appreciate that very much! Sometimes I feel like this strength alone is what is sustaining me during some hard times.
So, to start with the good news- Matthew's heart catheterization went much better than I had anticipated in terms of handling the procedure. Dr. Gray was done in a mere hour and fifteen minutes! Matt and I were shocked when the cath lab pager went off. We found out his pressures looked good and he handled things without coding this time-- such a relief!!
I knew something was wrong when the entire transplant team was sitting in the cath lab office waiting for us when we got there. I think the first words out of my mouth when I saw Matthew's cardiologist (Dr. Everitt) was "oh no!!" Not, that I wasn't glad to see her- I love that woman, it is just not the normal post-cath routine. Dr. Gray and Dr. Everitt then told us that Matthew's coronary arteries looked "ratty." They found significant narrowing of multiple coronary arteries. Matthew's left heart cath in April of this year showed no signs of CAD. So he has an acute development of the disease and we don't know how quickly it will continue to progress. Coronary artery disease is the number one killer in transplant patients 1 year out from transplant. There is not really a good treatment or cure for it. They have started Matthew on three new medications to try to help with CAD. One of the meds he started is Aspirin to thin his blood. We have come full circle, and once again Matthew is at risk for sudden death caused by a heart attack. These past few days have been really difficult for me and Matt to process and comprehend.

The silver lining in all of this is that cardiology is going to let our family go on our Make-A-Wish trip to Disneyworld to let Matthew meet Lightning Mcqueen. For all of you who know Matthew really well, you know how big of a treat this will be. We did not tell our children about this trip because honestly, with all of the problems and concerns we've had with Matthew, we didn't think going on this trip would be a reality. When Dr. Everitt told us the bad news on Monday I tearfully asked "well, can we at least take him on his trip to Disneyworld then?" This week we are focusing all of our energy on getting excited about our trip. We are trying not to worry about the "what if's" and the "what are we going to do's" this week. It is so fun to watch the kids giggle and talk about all the exciting things they will get to see and do while we are there. I cannot wait to leave our worries in Utah and get away with the family for an entire week!

The day after we get home, Matthew will be admitted to the CICU to undergo plasmapheresis. Basically, it's like dialysis. They spin Matthew's blood to separate the plasma from the antibodies that are contributing to the CAD problem and then they give Matthew his plasma back. It's a long shot, but hey, miracles have happened in Matthew's life before- why not now?? Transplant plans to have him repeat his heart catheterization in a month to see if the treatment helped slow or maybe reverse the damage done to the coronary arteries. If this is the case, we will wait and watch him very closely. If it has not improved or if things have gotten worse, we will begin the process of re-listing him for another transplant-if that's what we decide to do.

I have heard questions like "How did this happen?" or "wasn't the donor heart perfect?" Well, before Matthew's diagnosis I used to think that coronary artery disease was what old men got when they ate too many cheeseburgers and had high cholesterol. This is not the case in transplant recipients. Because of his donor specific antibody rejection and his ongoing cellular and vascular rejection this disease in Matthew has developed. He did have a perfect heart given to him which was an amazing gift for which we are grateful for daily. This is nobody's fault! Matthew has received fantastic care. We are so thankful for the many doctor's and nurses who are willing to care for him and sacrafice their time and so much of their energy in trying to help him. Let's face it- luck has never been on Matthew's side. He is the sweetest, most wonderful three year old you will EVER meet. Yet, he has had to deal with so much more than any human being I have ever known. He has touched the lives of many, and will continue to teach us lessons about life and how to gracefully deal with really hard things. I love this little man with my whole heart.

This is not a farewell speech!! Matt and I will continue to fight for Matthew until the Lord decides to call him home. It is not our decision, it is the Lord's. I ask that you continue to pray for our entire family and those involved in Matthew's medical care. We so need the strength that can only come from the faith of others and the power of fasting and prayer.

So, those are our worries for another day. Today, and the rest of this week, we are a normal family getting excited to enjoy an amazing get away together. I will cherish EVERY moment of the next week.

Sunday, October 9, 2011

Here we go again....

The past three weeks have been C.R.A.Z.Y!!! Matthew ended up being in the hospital from Tuesday September 26th- through September 30th. We also had four doctor appointments last week and I had to make 5 trips to Primary Children's. Matt and I have decided we need a smart car as a commuter car to and from the hospital :) While in the hospital, Matthew received 6 doses of Solumedrol and an IVIG to help get on top of the rejection we've been fighting for the past two months. His heart rate is still abnormally high for his age group and compared to what his normal was before all of this began. Because of this, and the fact that there are still some concerns on his echo, we are doing a full heart catheterization and another biopsy tomorrow. They will be looking at both sides of the heart and looking at Matthew's coronary arteries to rule out coronary artery disease. A lot of people have asked me what a "cath" or catheterization is. Basically, an interventional cardiologist threads a wire through a blood vessel in his neck or groin to get access to Matthew's heart. They measure all the pressures, and are able to see things during a catheterization that they can't see on echocardiogram. They also take a piece of the heart for pathology to study to determine whether or not Matthew is in rejection. The pathologists are able to grade the rejection to let us know how severe the rejection is and what type of rejection is occurring.
So, big day tomorrow!! I have a little more anxiety going into tomorrow than I have had with past heart catheterizations. Almost three weeks ago during his last cath Matthew's heart stopped. We still are not clear as to the reasons why this occured. I think we were lucky in the fact that they were able to resuscitate Matthew quickly- still scary though!! I hope things go smoothly tomorrow and that we can get some answers about what is going on.
Thank you for your continued prayers and support. This has been a seemingly endless trial. We are grateful for each of you- we could not do this without you!