Saturday, December 31, 2011

Happy New Year!!

I just finished filling in my new calender for 2012 with all of the important dates to remember for the next year. I couldn't help but think about what this next year will bring as I reminisced about 2011 and all the surprises that took place last year. I'm hoping for a wonderful year!!

We had a FANTASTIC Christmas!! I tried to let down my hair down and let Matthew and the entire family enjoy each other and our celebrations with one another. Matt had the entire week off which was the greatest present of the season!! Matthew jr. has not seen, and in some cases, has not even met some of his cousins. Because things are a bit up in the air with Matthew at the moment, I wanted to give him the opportunity to see his cousins and Aunts and uncles while they were in town. He LOVED it!! I think he felt the love from so many relatives he has not seen, literally, since transplant!

Matt and I both commented that we feel very blessed that Matthew was able to stay healthy through the Holidays (especially because I got a stomach bug myself). We are grateful for the opportunity that we had to enjoy this Christmas season with those that we love.

The plan for Matthew as of now is to wait. It can be hard at times, but I've tried to take it one day at a time and enjoy each and every day I have with Matthew and my other boys. Life is fragile, this much I've learned. Each day with those that we love is a blessing! Usually I'm brought back to reality after clinic days or other visits. I'm reminded of how sick Matthew's heart really is- even though he's not showing it much yet. I'm reminded that things could change at any given day depending on an echo or other clinical findings. Right now, the transplant team is giving him time with his current heart until the coronary artery disease takes over and we are forced to move ahead with another transplant. This was hard for me at first because if re-listing him is what we will eventually end up doing down the road anyway, I wanted to re-list him while he was seemingly healthy so that we could have time for him to get a new heart. I understand the dilemma. Matthew's heart is sick, but he's doing well. He's happy and he enjoys life. There is no guarantee with a second heart transplant. Things could go good, or things could go terribly wrong. And so, we hope and we pray that his wonderful little fighting heart can continue to triumph for as long as possible. Matthew's birthday is approaching and I am hoping that we can make it to his birthday on January 24th without any heart drama!

Love and happy thoughts to you all for a wonderful 2012!!!

Friday, December 2, 2011

To celebrate, or not to celebrate?

Matthew had his follow up heart catheterization to assess his coronary arteries yesterday. He tolerated the procedure really well which was a relief. Matt and I were paged to the cath lab where we talked with Dr. Everitt and Dr. Gray. Great news.... it seems that the coronary artery disease has not progressed any more and has even improved a little bit. I think this information was the best case scenario we were hoping for yesterday. However, it was unexpected. After these past two months, Matt and I had mentally prepared ourselves for bad news. What a wonderful surprise!! Matt and I enjoyed the day with Matthew together (we had to have Matthew lay flat for 6 hours post cath because they accessed him through the groin).

When we were just about to be discharged from the hospital we went to the cardiology clinic to complete Matthew's echo. When we got back to Matthew's room, Dr. Molina, Dr. Mack and Emilee were there reviewing Matthew's chart. Dr. Molina told us that Matthew's biopsy report had just come back from pathology and that he was experiencing some mild cellular rejection. Also, on Matthew's echo he had a pericardial effusion (fluid around his heart) and he has a heart gallop again. So...... our hours of celebrating were short lived. The transplant team is all going to get together to discuss what the future care for Matthew should be. Dr. Molina wants another pathologist to review his biopsy for a second opinion. We are waiting on a few labs to come back to hopefully shed some more light on how we should proceed.

I will update you when I get more information. For now, we are relieved to know Matthew is in good hands. We appreciate all that his medical providers do to help Matthew. He is a tricky patient to figure out. We are grateful for the transplant team and trust them completely. Thank you for all your prayers. We love you all!

Monday, November 28, 2011

I just wanted to let you know that Matthew is DONE with his Rotiximab treatments!! We have officially completed everything the transplant team has tried to do in an attempt to reverse or treat some of the coronary artery disease we discovered just about six weeks ago.

Matthew is scheduled for a full heart catheterization and biopsy this Thursday, December 1st. I am super nervous. Either the treatments worked and we were able to buy some more time, or the treatments did not work and we will be going through the process to re-list Matthew for another heart transplant. I will keep you posted when we find out the results of the cath.

Until then, I sincerely appreciate your support! Your comments, prayers, and thoughts all strengthen me more than you know! Please remember Matthew and his physicians in your prayers this Thursday!

Saturday, November 12, 2011


One Tuesday down, two more to go! We started off the day at 7:45 am getting bloodwork and an IV placed. Then we had an echocardiogram and cardiology appointments. At our cardiology visit, Dr. Everitt said Matthew's filling pressures on his echo would suggest that his heart may be getting worse. Also, Matthew has had this very faint heart gallop in the past that only Dr. Everitt and a few others could hear. Well, on Monday night when I was taking Matthew's vitals and listening to his heart- I heard the gallop very clearly. In fact, it kind of scared me because it sounded so different than what I was used to hearing. I had Matt listen as well and Matt said that what I was hearing was the heart gallop. Because of these things and some other clinical findings at our appointment we went up some more on the Lasix to try to help remove some of the extra fluid. Dr. Everitt's impression was that all these treatments (plasmapheresis, rotiximab infusions, etc) may not be working. However, she wanted to wait for a week to re-evaluate things before moving up Matthew's heart catheterization. I am still hopeful that the treatments can kick in soon and will be effective in helping things improve. I guess this next Tuesday will be telling. If things continue to decline, we will most likely be doing the heart cath next week.

After we were done with cardiology, we went to Hematology/Oncology to their infusion clinic and started Matthew's Rotuximab. This was a first for me. The Oncology section of the hospital was a place I never imagined me and sweet little Matthew needing to be! It is a very sad place. There are about 8 very, very small curtained areas where children are getting chemotherapy infusions. Babies, teenagers, and everything in between- all of them being treated for some kind of cancer I'm assuming. Kids falling asleep in recliners, sweet bald heads- all trying to pass the time as the iv infusion slowly dripped, dripped, dripped... Matthew deals very well with all kinds of things except for hearing another child in pain or upset. There were a couple of babies on Tuesday who were crying. Matthew is very sensitive to this. He became quite concerned and then got upset himself. Tuesday was the first time I have ever heard Matthew say "I hate this hospital!! I want to go home right now!" Physically, Matthew tolerated this infusion better than the first one he received in the hospital. His heart rate remained stable and he didn't get a migrane. We only have two more of these infusions left. Obviously Matthew doesn't have cancer, but Rotuximab is classified as a chemotherapy drug that cardiology is using to give Matthew some good antibodies to protect against lymphoma- since he is immune suppressed and we just stripped away all of his antibodies. Lymphoma has been a scare for us with Matthew in the past and something the medical team continues to watch very closely.

Maybe I'm delusional, or maybe just a mother protectively guarding her emotions. But sometimes I just don't think of Matthew as being the sickly type. For those of you who see him you can attest that he looks like a completely healthy, happy child. Sometimes I focus on that and not so much all the details of what is going on medically. When we were on the Oncology floor one of the child life specialists approached me about starting to collect a "Colors of Courage" necklace for Matthew. She said, although Matthew is not a cancer patient, he's been through quite a bit and this program could probably apply to him as well. I skeptically looked at the list of all the procedures, infusions, surgeries, etc that cancer patients undergo to "collect" beads for their necklace as sort of a documentary and acknowledgement of what they've experienced medically in their life. Much to my surprise, Matthew has undergone 25 of the 30 things on this list- some of these things he's repeated 20 to 100 or more times. Maybe seeing all the beads on a necklace or seeing everything he's been through on a list compared to cancer patients made me realize- Matthew really is very sick!! I know this probably sounds silly, but sometimes going through the motions and not dealing with reality is the only way a mother can survive something like this. I guess I was brought back to reality. :(

Since it's November and Thanksgiving is only weeks away, I wanted to express my gratitude to my parents. Many of you may not know that my Mom and Dad have always wanted to serve an LDS mission. Their plans were delayed when Matthew was sick and had his heart transplant. At Matthew's annual heart cath and biopsy when things looked so great- we all thought the biospy marked a new beginning for easier and improved circumstances with Matthew. It was at this time that my parents submitted their mission papers and received a call to serve in the Warsaw, Poland mission. They were so excited!! They got busy preparing to serve and learning all they could about the Polish language and culture. About two weeks before they were to leave, we found out that Matthew was in rejection. We still didn't think this was a big deal. Matthew has had several episodes of rejection and we felt confident that he would overcome this episode triumphantly like he had past episodes. It wasn't until my parents left for Poland that things really got crazy. When we found out Matthew had coronary artery disease and discovered the reality and implications of this disease my parents prayerfully met with their mission president and was told by President Nielson that my parents mission was not to be in Poland that they were needed in Utah. They have not been released yet, we are waiting to see what happens in these next couple of months. However, they take their mission very seriously and have been a tremendous help in Utah and particularly with Matthew and myself! One of the great gifts that my Mom has is that she makes you feel like when she's with you there is honestly no other place she would rather be- even if that is on the oncology floor behind a curtain in a cramped area. I honestly don't know how I could do all of this without them. I am grateful for their sacrafice and delay of a life long dream once again- even though I felt really guilty for a long time. I know that they honestly feel like they are where the Lord wants them to be at this time.

I am also incredibly grateful for my Mother and Father in law who have been equally helpful. I feel really lucky to have a wonderful relationship with my in-laws. My mother in law has been dealing with some medical issues of her own, but always puts her own needs aside to do anything in her power to express her love and support to our family. She is one of the most selfless people I know and I love her very much. I also worry about her a lot! Sometimes I feel like I need to protect her so that she will take care of herself. I hope she knows how much she is loved and appreiciated!

Even amidst the trials in this life blessings can be found if you open your eyes to all that the Lord has blessed each and every one of us with. I truly am grateful for the blessing of family- immediate and extended. I think the Lord gave me the best on both sides! For this, I truly am eternally grateful!

Saturday, November 5, 2011

Home again!

Matthew got home from the hospital on Thursday, November 3rd. It was SO nice to get him home! 10 days in the hospital with a three year old is exhausting! Especially when he is immune suppressed and cannot participate in a lot of the activities the hospital provides for hospitalized children. His hospital room quickly transformed into a a playroom. We brought suitcases of toys and good friends and aunts and uncles visited and brought him other fun things to keep him busy! Thank you so much- all of you!! The highlight of the stay for Matthew was a whoopie cushion brought by his Aunt Ashley and Uncle Ben. Matthew became known as the prankster who played tricks on all the nurses, doctors, and tech's. Once again, everybody who spent even a minute with Matthew learned to love him quickly! The cleaning lady, foodservice delivery ladies, nurses, and everybody on the floor loved to be around Matthew's charming and fun personality. It is effortless to love Matthew. This gift evidenced itself once again during our hospital stay!

He tolerated the five treatments of plasmapheresis well. "Napoleon" was the name of the dialysis machine that would visit Matthew every other day to filter out Matthew's plasma. It was wierd seeing this machine in action. I tried not to think about too many details during the process. Watching his blood being drained from his body, run through a filter and then watching the fresh frozen plasma and albumen being added back into his blood was a little intense. I'm glad it's over! We won't know if these treatments were effective until his next heart catheterization and biospy. This is scheduled for December 1st, however, it could be moved up if cardiology feels a need to do so.

Until December 1st, Matthew will have weekly appointments and Rotuximab infusions every Tuesday. These will be VERY long days!! They start with a blood draw and IV placement in the early morning following by an echocardiogram, usually and ECG, and cardiology doctor appointments. Then we will go upstairs to the oncology floor to their infusion clinic to receive the Rotuximab which I think will take about 2 hours or maybe longer. As it was explanined to me, these infusion treatments are necessary to give back some very specific antibodies that were taken away during the plasmapheresis process. Cardiology wants Matthew to have the good antibodies that will help fight off things like CMV and EBV so that those viruses don't become an issue later on.

Matt and I met with the two transplant cardiologists, the social worker, one of the transplant nurses, and a hospice nurse yesterday in a question/answer session to help us start getting prepared for decisions that will need to be made in the future. The information we received was not surprising, by any means, but was still hard to hear nonetheless. The research shows that transplant recipients with coronary artery disease will not survive two years out from diagnosis. Coronary artery disease is responsible for 50% of re-transplants and is the number one killer of transplant patients who are at least one year out from transplant. We are not sure how quickly this disease is progressing in Matthew, but Dr. Everitt told us that she would categorize his CAD as "severe" and he didn't have any signs of it in April. Our assumption is that it is progressing quickly. We are hopeful that the plasmapheresis treatments slowed, or maybe even reversed some of the damage already done. However, even as a best case scenario, plasmapheresis is not a cure for CAD. It would only buy us a little more time- how much time? We are not sure. If at his heart cath things do not look improved, we will re-list him for another heart. I think Matt and I feel like we need to move forward with treatment as long as Matthew is acting healthy and is happy during the process. Our decision can always change. The statistics for a re-transplant are not very encouraging either. There are only 39 patients internationally who have been in Matthew's situation- less than three years out from transplant and in need of a new heart. Whether or not he will get a new heart is a big question. Whereas before Matthew was eligible for 75% of hearts in his blood type, because of the antibodies Matthew has developed over the passed year and a half, Matthew is now only eligible 33% of hearts within his blood type. The statistics among those 39 patients who have been involved in the study (who actually received a 2nd heart), 80% lived beyond the first year and only 50% lived to five years. There's not much data out there beyond that because re-transplant is very new in children. Have I lost you yet? I know a lot of numbers that don't mean much unless you stew over them day and night feeling totally responsible for making the right decision for your child!

So, there you have it! The update. It really is much easier to update everybody this way. It's hard to talk about these things. Matthew is getting older and is understanding more and more. He's always with me making it harder for me to talk to everybody on the phone for updates. This is a tricky subject- life and death when it is so personal and when children are involved. I would ask that you all please be sensitive in your conversations around Joshua and Luke. They are aware of the situation. We have tried to be very open and honest with them always. In fact, when we were in Florida we went to the Orlando temple grounds on Sunday and had a family devotional where we discussed what was happening and the reasons why we were in Florida as a family to enjoy time with each other. It is not easy. Obviously Joshua understands the most. I have had some very difficult and tearful conversations with him. I would hate to have any of my children hear discussions being had by other adults about the reality of their little brother! I would much rather they hear things from me. I appreciate your understanding of this.

Amidst all of this, we really do feel blessed! We have a wonderful family and we have been given the gift of time with Matthew. I can honestly say without any regrets, that I would not change a thing! I have tried to love him and enjoy him as much as I can every day. We have tried to provide family opportunities where we can build positive memories. We have tried to have a home where love can be felt by all of our children. Matthew is happy and he knows, without question, that he is loved!

Hard times, lie ahead. I don't know if I'm ready for whatever is going to happen. Matt and I will fight for Matthew until we feel like it's time for him to go home. I pray for spiritual strength for myself and my entire family. I find myself starting to turn things over to the Lord more and try to have faith in his plan for Matthew! I'm not sure what this means. Please keep the prayers coming! We need them now, more than ever!!

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!

Wednesday, September 28, 2011

I have to apologize in advance for the type and grammar errors that will most certainly occur during this post. I am updating the blog as I sit in the hospital on my phone key pad so we'll see how this goes...
Matthew had a heart catheterization and biopsy last Tuesday to make sure Matthew was over his rejection before we stopped the steroids. We've been through biopsies enough to know what to expect. I started getting nervous when an hour had passed and my pager had not gone off yet. The cardiology fellow came out of the cath lab and told us they had had andifficult time getting access in Matthew so they were behind schedule. Another super tense hour and a half went by before the interventional cardiologist came out of the cath lab to tell us that Matthew's heart stopped in the cath lab and they had to give him atropine, epinephrine, and administer chest compressions before they got a pulse back. Thankfully they did!!! He was held overnight in the cardiac ICU for observation and then moved to the floor to be monitored. During this time period, the transplant team noticed a higher than usual heart rate which they worried may be a result of an arrhythmia that could have started after the cardiac arrest episode. Matthew's EKG seemed to come back fine but his echo showed more regurgitation from his mitral and tricuspid valves. The pathology report also came back indicating that there was no rejection at all- Matthew's best biopsy, in fact. So, we were at a loss as to what was happening with Matthew's heart. Matthew's cardiologis felt like even though the pathology report came back clean he was still in rejection. We re-started the oral steroids at a high dose and went home from the hospital promising to return to clinic in a day. At that appointment we were given a holter monitor (it's kind of like a simplified EKG that he wore for 48 hours which recorded his rhythm and heart rate). After the weekend, we went back to clinic and things seemed to be improving a little bit on echo so we started the steroid taper and went home. On Tuesday, my fabulous babysitter Jenna watched Matthew while I volunteered in Luke's class. When I got home Jenna told menus kept slapoint his chest. When I asked him abou it, he told me his heart hurt. I hooked him up to his monitor and checked his heart rate then listened to his heart. I had never heard a heart rate like the one I heard yesterday- it was beating normally really fast, then it was like it transistioned into a really slow heart rate for a few beats and then it went really fast like it was trying to catch up. I called the transplant team and they told me to bring him to PCMC. They did another EKG and another echo and reviewed his heart biopsy with two other pathologists. It was decided tha Matthew was in rejection and that the oral steroids were not treating it. So, here we are in the hospital for the next three days while mathew is being monitored and receiving IV big gun steroids.
I hope we can get him moving in the right direction. We are suppose to take Matthew on his make a wish vacation to Disneyworld to meet Lightning McQueen on October 18th. I sure hope we can go!! He's been looking forward to this experience for a very long time!
My Mom and Dad also left to go to Poland tonserve a mission for the next 18 months. To say the least- I've been an emotional wreck! I have the best, most supportive family on both sides! I truly am blessed!
Please keep Matthew in your prayers. We feel your strength and support always.

Friday, August 26, 2011

Quick update: Matthew had his cardiology appointment yesterday. His echo looked worse than the previous week. We began a more intense treatment for his rejection. He was started on high dose steroids which we will begin to wean in 5 days very slowly. Maybe it's in my head, but I swear he's already getting puffy! I'm not looking forward to his "roid" rage that is so often associated with taking a lot of steroids. My sweet, mild tempered baby turns into a completely different person. He is on all kinds of prophylaxis drugs again. I am hoping and praying that this will work!! We follow up with cardiology next Thursday and they want to do another heart biopsy in a few weeks.
Please keep Matthew in your prayers!! We love you all and appreciate your love and support!

Friday, August 19, 2011

And the journey continues...

Yeah!! Look who's blog is up and running again!! An update is long overdue, and to be honest, blogging is thereputic for me.

In my last posting, which was way too long ago, I mentioned that our family always takes full advantage of the good times because we have learned all too well that those good times can often be short lived. In fact, we often joke that we never want anything fun written on our calendar or planned. If we have tickets to anything or a vacation planned it's like we jinx Matthew and something bad happens with his health.

After our year out from transplant biopsy, I really felt like I was on top of the world. The transplant team told us before Matthew's transplant that the first year would be the worst and things would improve after that. When we got such great news at Matthew's biopsy I felt like we were finally over the year out hump and life would be good from here on out. I was brought back to reality a few weeks later when Matthew started chocking on a fruit snack during sacrament meeting at church. Matt was working this Sunday (of course!) and I was so proud of myself because I had gotten up, gotten the kids ready for church, made it to ward council in the morning, AND I made it to church on time. I was excited to be able to fulfill my responsibilities despite Matthew's condition and Matt's work schedule- it was a liberating feeling. And then..... Joshua was being sweet and helpful in the morning and put a few things in the Sunday bag including three packs of fruit snacks. When we got to church, Matthew saw the fruit snacks and wanted some- bad!! It was like an obsession that could not be forgotten until his craving was satisfied. Being a new church goer, Matthew didn't understand that we don't eat snacks or read our books until after the sacrament so I caved in and gave him a single fruit snack. One of Matthew's eating "issues" that we are dealing with is that Matthew has never developed the necessary muscles to eat so he tires very quickly. When he gets tired, he packs his food in his check. He has gotten very good at hiding his food in there! I couldn't see that he still had fruit snack in his mouth and so I gave him a piece of sacrament bread when it came around. I guess the combination of partially eaten fruit snack and sacrament bread was too much for Matthew to handle so he started coughing. I took him out in the hall and he immediately started gagging and then throwing up. After that it was like a vicious cycle of coughing, gagging, and then completely chocking where there was no air moving in or out at all. He was turning blue- like he used to be prior to his transplant and then he'd kind of get limp and his eyes would start rolling to the back of his head. There were lots of nice people gathered around me from the other ward who shared the building with us who were helping me. I left Matthew with them as I ran to get Brother Fillmore, a physician's assistant, from our ward who ironically, I saw enter the chapel that morning and took special note of where he and his family were sitting. He came out in the hall and witnessed Matthew as he continued to cycle from coughing to trying to throw up to not breathing at all and almost passing out. He then did a version of the hymlic and agreed that we should call the paramedics. The ambulance and firetruck came in a matter of moments and by that time, Doug had worked his magic and Matthew was doing much better. We went with the paramedics for Matthew to be monitored and to get his chest xrayed to make sure he had not inhaled fruit snack into his lung. It ended up being a fun adventure for Matthew because he got to ride in an ambulance to see Daddy at work! What made this experience traumatic for me was that this happened almost to the day of Matthew's one year anniversary and Matthew's donor passed away because he chocked on a nut! I was pretty much freaking out and thinking in my mind- "I have fought for Matthew was too hard for him to die this way!!" To say the least, we have really been pushing speech pathology where they are teaching Matthew how to chew and swallow better!!

After that fun experience, things were pretty uneventful (which I LOVE!) until Matthew got sick in June. Matthew got the parainfluenza virus- which is just a little Summer virus to normal people, but this virus hit Matthew REALLY hard! He had fevers of up to 105 degrees, his sats were falling to the low 80's, and his heart rate raised to 170 (normal for him is 110-120). One of the joys of being a physician's wife is that when your child is really sick, your doctor says "oh, Matthew is is really sick, but your husband is a pulmonologist so you can take him home instead of admitting him to the hospital." Yes, it is true that Matt is a doctor- but I'm not! Matt works a lot which puts a lot of pressure on me to care for my sick child and pretend like I know what I'm doing. This is what happened for several days. But then, Matt was home long enough to see how sick Matthew really was and said "Matthew is way too sick to be at home! There are kids that are not as sick as Matthew that are admitted and in the hospital right now!" Matt does not say things like this unless he means it! I feel pretty proud that we do keep Matthew out of the hospital most of the time. He spends enough time at the hospital that I would much rather have him at home, if possible! In fact, this hospital admission is the first hospital admission we've ever had that was not heart related- which is a small miracle in and of itself. Also, as a side note, the chocking ambulance ride was Matthew's first ambulance ride. Anyhow, Matthew spent a little over a week in and out of the hospital. He was really, really sick! They did a lot of blood cultures and tests. We meet with infectious disease and oncology. They were thinking that he had developed Lymphoma (which they have been suspecting and tracking since February and which is still a black cloud hanging over all of our heads). It was a LONG week! We were finally able to go home at the first of July, but Matthew went home on oxygen. My extended family had our big family reunion at Bear Lake (which I was in charge of) in mid July and Matthew's doctors said he couldn't go. So, Matt let me go with Josh and Luke and Matt stayed home with Matthew. When I got home, Matthew was off of oxygen and seemed to have returned to his happy, healthy self. Matt jokes that he fixed him! He still ocassionally gets nightmares from his hospital stay. Every time he spiked a fever in the hospital they woke him up to draw his blood. Matthew sometimes startles in his sleep saying "owie, owie, owie!" I go and comfort him and eventually he calms down. When I wake him up in the morning to give him his medicine sometimes he says "please Mommy, don't hurt me!" It breaks my heart to hear him say things like that! I'm glad that month long experience is OVER!!

So, we had a few good weeks after that! Life was back to normal and we had some Summer left as a family to enjoy... or so I though! At a routine appointment last Thursday, and when I was least expecting it, Dr. Everitt came in after Matthew's echocardiogram and said Matthew that has a pericardial effusion (fluid around his heart) and the wall of his heart is thickening. Both of these symptoms are signs of rejection that they look for in post transplant kids. She wanted us to come back in the morning to do a heart biopsy to confirm or rule out rejection. So, we did and it was confirmed by pathology that Matthew, once again, is in rejection. This left us in a very tricky spot because they have been trying to wean his immune suppression meds because of all of Matthew's pre-lymphomic symptoms he's been having for the past six months. It's a complicated balance- keeping the heart happy and not rejecting and keeping Matthew's body happy and not suppressing his immune system too much that cancer runs rampant! So, Matthew's doctor's decided not to treat his rejection with high dose steroids like usual. Instead we have raised his normal immune suppression medication (Prograf and Cellcept) in hopes that it will be enough to help with the rejection but not run down his immune system like steroids would giving the EBV virus (which attacks cells and turns them into Lymphoma) a chance to run wild and cause a full blown lymphoma. I am nervous because his heart function during his heart cath has been effected by this rejection episode. I don't want to ruin the heart, but I don't want him to get lymphoma!! Matthew's poor cardiologist- I would hate to be in her position! We had an appointment yesterday and his heart showed no signs of improvement, but it didn't look any worse yesterday on echo. If the treatment is working we should see improvement by next week. If not, I guess we will start steriods. We'll see....

And so, there's the update. Crazy, I know!! I feel like we are back to square one. Matthew cannot go out in public, no friends in the house... everything back to the way it was. We are doing the best we can, but how do you tell your 3 1/2 year old that he can't do things he could do two weeks ago? How do you tell Josh and Luke that they are expected to make sacrafices yet again when they have been so patient over the past year and a half? Matthew is such a sweet boy and such an amazing little trooper. One thing the doctors always say is that clincially, he never has any symptoms of rejection. He's happy, energetic, sweet... he's one tough little guy! We love him SO much! I love all my boys! I really do feel like Heavenly Father blessed me with the choicest spirits in heaven!

Sunday, May 1, 2011

My heart has been full of emotion for the past few weeks as we are approaching our year anniversary since Matthew's heart transplant which was on May 19th, 2010. On one hand, I feel like celebrating because May 19th marks the first day of Matthew's new life. A life in which Matthew would not need oxygen to live, a little body that is beautifully pink instead of blue, and a boy filled with normal toddler energy. However, on the other hand, I feel extreme sorrow. I feel so much sadness for the incredible donor family who, one year ago, lost their precious little boy. I have never before felt such a conflict of emotion. I feel a little bit guilty that in order for our miracle to occur a tragedy needed to take place. I can honestly say that for a year, I have thought about that little boy and their family every day. My prayers are with the donor family, whoever they are, that they may find peace and strength this month and always!

As I reflect on the past year, I feel tired. It was an emotionally draining year filled with so many ups and just as many downs. Matthew has come a long way and we feel very blessed. Matthew just had his one year heart biopsy last Friday. Matt and I figure that this surgery marked Matthew's 20th surgery in his short three years of life. We received some great news! His heart has NO rejection and the interventional cardiologist, Dr. Cowley, described it as pristine with perfect pressures!! Never before in Matthew's life have the adjectives "pristine" or "perfect" been used to describe Matthew's heart. I was speechless and all I could do was cry tears of joy!! After a very long day, and several procedures and doctor's appointments later, one of Matthew's transplant cardiologists, Dr. Molina, told us that the reason they do heart transplants on children is to provide them with a better quality of life and that the time has come to start allowing Matthew to have a more normal life.

Our first outing was to take Matthew to church on Easter Sunday. Matthew's perception of church has been shaped by watching Josh and Luke come home each Sunday to show me their church treats or projects they collected while at church. You can imagine Matthew's excitement Easter morning when he knew he'd finally get to attend. When we arrived at sacrament meeting and sat in our places Matthew asked with a little disappointment in his voice "this is church?" About 40 minutes later he told us he wanted to go home! So much for our big, exciting church unveiling. Hopefully his love for attending will improve! We still have some obvious restrictions from the cardiologist for Matthew like no nursery or gym babysitting (ever), and he can't be around any kind of sick person. Our new found freedom is crazy!! We went out and got a family frozen yogurt treat and everybody got to go inside to pick their flavor. When I need something from the grocery store I get really excited when I remember I can go at any time and don't need to rely on a babysitter! Josh and Luke are LOVING having friends over again!

My goal now is to work on eating. He is doing a little bit better trying foods by mouth, but still receives about 85% of his nutrition through his PEG tube at night. He told me the other day that he was hungry and I about passed out! He tried two bites of what I had prepared for him to eat and then he was "full". Oh well, it's a start I suppose. I am working with a nutritionalist and a speech pathologist (who helps Matthew learn how to chew and swallow) on some of his feeding issues. I've been working with Matthew on how to hold a spoon or fork and feed himself. I've realized how much I took for granted with my other children. Skills that came naturally to them seem to be such an effort with Matthew. Matthew still takes 6 medications 3 times a day, however, we continue to wean him from meds at each visit. His cardiology visits and echocardiograms are monthly now. We have learned all too well through this experience that life can change so quickly! We have learned never to take for granted the happy, wonderful, carefree moments we share as a family!

I am so grateful for the blessings and miracles our family has received this past year! We have been overwhelmed with the realization that our Heavenly Father is aware of us and loves us very much. I hope you know how much we love each of you. Without your love, support, and prayers we never could have survived this year! Thank you very much!!

Tuesday, February 22, 2011

Thanks to all for your kind words and thoughtfulness!! I have just a quick minute and wanted to let everybody know that the pathology report came back NEGATIVE for PTLD or any kind of lymphoma..... whewhh!!! I cannot tell you how blessed we feel and how relieved we are to know that we will not be fighting that battle any time soon.

Matthew gets better every day. We had some rough nights, but thankfully Matt had President's Day weekend off so he was around to tag team. The ENT sent us home from the hospital with oxygen because Matthew keeps de-sating into the low 70's but comes back up to a normal oxygen saturation percentage with oxygen. The transplant team told us that another transplant patient who had the same surgery done did the same thing after surgery. We are trying to control his pain and enjoy his extra snuggles as he recovers. My Dad had his hip replaced a few weeks ago and when he came over yesterday to visit Matthew, Matthew wrapped Grandpa up in his favorite blue blanket and gave him hugs telling him to feel better. What a sweet boy! He is so in tune to other's needs and discomforts and tries to make everybody around him comfortable and happy. I love that little guy.

Joshua had a big week last week as well. He participated in his school's patriotic program- the biggest program of the year at his school put on by the fifth graders. He did awesome!! He also received his Webelos badge which he has worked so hard to earn. Luke got up on skiis for the first time and did great. Luke has a fun personality and makes us laugh so often in our home.

One of the biggest challenges during all of Matthew's medical issues has been juggling the needs of all my children and making sure they all feel loved and important. I know we mostly talk about Matthew in this blog, we started it to update everybody on the happenings with him during his transplant. I feel very blessed to be mother to of each one of my son's. I love all of them SO much!!

Monday, February 14, 2011

So..... the ENT doctor is where I last left off. I should know by now that I should never take ANY doctor's appointment for granted or think that I know what is going to happen at our visits. If I ever assume I know what is going on- things usually end up happening quite differently than expected. This was the case with the ENT! He did agree that Matthew had sinusitis and that Matthew needed tubes in his ears. However, he also told me that Matthew's adenoid needed to be removed because it is the size of a golf ball. He also told me that Matthew's tonsils are huge and need to be removed. He's not treating the sinus infection because he believes that the golf ball adenoid is holding bacterial infection in his sinuses that cannot be cured until the adenoid is removed. But here's the clencher: he asked me if I had ever heard of PTLD which I remember vaguely being told about when we met with social workers and transplant coordinaters prior to Matthew's transplant going over volumes of paperwork and signing page after page indicating that we acknowledged the risks involved with transplant. PTLD is post transplant lymphoproliferative disorder. Basically, when you are on high dose steroids there's always a risk that you are shuting off your body's ability to fight off good cancer fighting agents as well. The ENT told us that with transplant kids he often times sees lymphoma present initially in enlarged adenoids and tonsils. Really?? Come on- give me a break! I think that cancer scares will be an ongoing pre-diagnosis for every doctor Matthew sees because of his history. I'm not going to believe anything from now on until I see the pathology report!! I was reassured last week at my appointment with cardiology that Dr. Everitt does not think Matthew has lymphoma. I sure hope she's right!!!

So, Matthew's surgery is this Friday the 18th and he'll stay at the hospital over night. The doctors are a little bit concerned about bleeding because he's been on Aspirin basically his whole life. But, we've stopped the Aspirin and things should be just fine. Once again I'm pleading for everybody's prayers. Many miracles on Matthew's behalf have taken place before and I know they can occur once again. Matthew is a fighter. He is an unbelievable child who has taught me so many things in his lifetime. We appreciate your ongoing love and support. It's been 9 months since Matthew's transplant but really 3 years of many ups and downs. We truly have the most amazing support system. We could never handle the things thrown before us without all of you! Much love to all of you on Valentine's Day!!!

Thursday, February 3, 2011

I thought I should update our blog before it hits the 2 month mark since our last post... sorry!!
Winter has never bothered me much before this winter. I actually look forward to each season. However, the germs of winter this year are killing me! This year has actually been one of our healthiest- for Joshua and Luke that is. Whatever luck we have experienced with Joshua and Luke has been counteracted by Matthew. Remember the little cold Matthew was getting over about 2 months ago??? He's still getting over it! Matthew's pediatrician treated him for a chronic ear infection as a result of this cold with 4 rounds of antibiotics. Matthew has had a fever for over a month and has been extra sleepy. We were told Matthew may have developed luekemia which is a common cancer seen amoung transplant recipients because of the steriods they have to take to avoid rejection. We went to see an infectious disease doctor and he told me to take a huge sigh of relief because Matthew did not have luekemia, however; he suspected Matthew was in rejection. I MUST be insance because I immediately felt a lot of relief. What is wrong with me??? We ended up in cardiology doing lots of bloodwork and an echo, but everything looked good there. Echo's are not completely reliable in ruling out rejection, but cardiology wanted to explore every option before rushing in to do a heart biopspy when everything else looked good. More relief. Last week we spent 4 out of 5 days at the hospital or in doctor's offices. This week we got a CT scan of Matthew's head and discovered that he has severe sinusitis and horrible ear infections. I'll take it over leukemia or rejection! Matthew's transplant cardiologist told us that she really wanted to get on top of this because sinus infection can enter children's brain in immune suppressed patients- so we have an appointment with an ear, nose, and throat doctor tommorrow. Why not?? We haven't seen an ENT specialist with Matthew yet. They are planning to scope him to see what kind of infection he has so we can treat it approriately because obviously it hasn't gone away given the 40 plus days of antibiotics he's already been on. Matthew will probably get tubes in his ears as well.

So, in a nutshell, this is how my last two months have been spent. I really want to get all of this resolved because any time Matthew has sickness that imitates the signs of rejection I always worry that he could be in rejection, but his sickness masks it. That's what happened a year ago when Matthew was sick and his sickness was covering up the fact that he was actually in heart failure needing to be put on the transplant list. Tommorrow we will get more answers and hopefully a gameplan to get Matthew better.

I think my new best friend is Punxsutawney Phil- the groundhog who did not see his shadow yesterday therefore, predicting an early Spring. :) Let's all pray he's right!