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.
Wednesday, February 1, 2012
Sunday, January 22, 2012
Another not so uplifting update
Matthew had an appointment this past Thursday, like most Thursdays! I think I may have cursed our situation because I told my Mom "this appointment should be a quick one- in and out." Not quite the case!! We did blood work and made it through the echo with ease. Then, Dr. Molina came in and told us that his echo showed that Matthew has developed some mitral valve regurgitation. For the past week he's also had a few symptoms at home that have developed as well. He's been a tad bit more sleepy and had a really wierd heart beat when Matt and I listened to his heart last Sunday night. The transplant team decided that Matthew needed to have a heart catheterization as well as an EP test with an electrophysiologist cardiologist that day. What??? I think I appeared to be holding it together okay for Matthew, but I was actually freaking out inside. In fact, when they took Matthew back to the cath lab I almost threw up. About 1 1/2 hours later one of the transplant nurses called me on my phone and told me that Dr. Everitt wanted to talk to me. The interventional cardiologist was done with his portion of the testing and she wanted to discuss the results with us. Thankfully, Matt left work and made it to the hospital just in time for our meeting with her. Long story short, she told us that she felt like it was time to re-list Matthew for another heart. He is beginning to develop too many characteristics of and problems from the coronary artery disease we discovered he had back in October. Now do you understand why I never sleep so good the night before a "routine" cardiology appointment? It wasn't a complete surprise. We knew this day would come. But, like most things in Matthew's life this day came much sooner than expected. Matt and I spent the next 1 1/2 hours(while Matthew was still in the cath lab with the electrophysiologist cardiologist) meeting with several required people to get Matthew back on the heart transplant list. Talk about Dejavu. We were meeting with all the same people less than two years ago. This sparked a bunch of early "transplant" memories. I think Matthew's hellish ordeal that first week after transplant pains my heart so much still. I just don't know if I can watch him go through that again (if you don't remember you can read some of the earlier posts from this blog). I guess we'll pray for strength and cross that bridge when we get there.
The electrophysiology stuff ended up not being atrial tachycardia like his ECG's and holter monitors were suggesting it could be. That was a relief. However, what they are seeing on the ECG probably indicates more damage caused by his coronary disease. All of this information solidifies that moving forward with re-transplantation is the appropriate step to take now, unfortunately.
So, what now? He's not on the list yet. Hopefully Matthew will be listed by next week. Yesterday Dr. Everitt called to tell us that some of the bloodwork came back positive for CMV. This is a virus they watch very closely in solid organ recipients. CMV can cause all kinds of infections in immune suppressed individuals like gastroenteritis, pneumonia, esophagitis, etc. More worrisome to me though, is the fact that CMV can attack specific organs. Matthew has never tested positive for CMV until now, but we knew his donor's heart was positive for CMV. We go to PCMC tomorrow for more blood work to see if this virus is coming or going in Matthew. If he's cleared it on his own, we are good to go. If he's just getting it, it will probably mean Matthew will not be able to be re-listed until the virus is under control. This is usually treated with an IV anti-viral drug called Gancyclovir. We'll see..... things are always changing.
Kind of a nightmare, but I woke up and that's still the update of our family's life. We'll take it one day at a time and keep trudging through. We REALLY appreciate good friends, wonderful ward members, our amazing family, and the love and support from all of you! Thank you so much!
The electrophysiology stuff ended up not being atrial tachycardia like his ECG's and holter monitors were suggesting it could be. That was a relief. However, what they are seeing on the ECG probably indicates more damage caused by his coronary disease. All of this information solidifies that moving forward with re-transplantation is the appropriate step to take now, unfortunately.
So, what now? He's not on the list yet. Hopefully Matthew will be listed by next week. Yesterday Dr. Everitt called to tell us that some of the bloodwork came back positive for CMV. This is a virus they watch very closely in solid organ recipients. CMV can cause all kinds of infections in immune suppressed individuals like gastroenteritis, pneumonia, esophagitis, etc. More worrisome to me though, is the fact that CMV can attack specific organs. Matthew has never tested positive for CMV until now, but we knew his donor's heart was positive for CMV. We go to PCMC tomorrow for more blood work to see if this virus is coming or going in Matthew. If he's cleared it on his own, we are good to go. If he's just getting it, it will probably mean Matthew will not be able to be re-listed until the virus is under control. This is usually treated with an IV anti-viral drug called Gancyclovir. We'll see..... things are always changing.
Kind of a nightmare, but I woke up and that's still the update of our family's life. We'll take it one day at a time and keep trudging through. We REALLY appreciate good friends, wonderful ward members, our amazing family, and the love and support from all of you! Thank you so much!
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!!!
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!
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!
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
Gratitude
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!
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!!
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!!
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