It has been a while since I have had the opportunity to comment on the blog. Mostly because my poor wife has had the task of taking care of Matthew's hospitalizations and doctor appointments. It was through the grace of one of my partners that I am even here today as we start another round of plasmapheresis in attempts to slow down the rejection that is sucking the life out of Matthew's heart. It is good for me to be here. There are two sides to medicine: the receiving end and the giving end. I spend most of my time on the latter or giving end. I prefer it that way. Its easier. I'm in the know and in control. No one stops me when I come into the icu, I don't get in trouble for using my cell phone, and don't have to bend over and pretend that I am happy when inside I am a wreck.
Back in October when they first diagnosed matthew's coronary artery disease one of the physicians pulled chrissy and I aside and told us that he would likely need a new heart within 18 months. We are starting to really see the reality of that statement. Since coming home from our make a wish trip it has been a steady down hill progression. We even see it at home with more cramps, vague aches and pains, fatigue, and failure to thrive. Don't get me wrong he is still happy and tries his best to be a four year old...his body just can't keep up with his mind. We don't need any echos to see it.
The bortezomib isn't working fast enough so in order to stave off yet another attack of rejection they have invited us back to the hospital for another ten days of sleepless nights, foreign beeps, and stress. We are honestly happy to do it if it means Matthew stays healthy for a bit longer but it isn't easy. Especially for my wife. I would like to think that it is easier for her because she doesn't spend every day in the icu like I do but I know that it isn't. When your son is the object of scrutiny it drains you of spirit, strength, and stamina.
We started at nine this morning with the placement of another dialysis line. He handled the line okay it's just the waking up part that continues to be a problem. He was so dystonic and agitated that in order for them to do the plasmapheresis they just ended up giving him more sedation.... He is still sleeping as I write. Let's pray that he wakes up more sanely this time and not like a cocaine junky looking for his next hit. Furthermore, his line isn't working very well which means more of the same for tomorrow as they exchange it for a larger one. I'm going to need some Ativan if this continues.
Matthew is a trooper though. He has so many friends here at the hospital it makes it almost bearable. We again can't thank our families, parents, friends, and doctors enough. A special thanks to my parents today who on their birthday are celebrating by bringing us lunch and watching Joshua and Luke.
I wish that I had the answers to all of this. I have prayed that our Heavenly father's will would be done but mostly I pray that Matthew won't have to suffer. I have seen too much of that already. Hope is not lost though and we continue to fight. I wish that I was independently wealthy and that i could spend all of my time making sure that he was well taken care of and happy. I know that he is surrounded by guardian angels and his time is not now. For that I am thankful.
Wednesday, February 22, 2012
Sunday, February 12, 2012
More of the same...
I really was hoping there would be no news to share until the "media fast" was over in March. Unfortunately, this is not the case. Last Thursday was another routine cardiology appointment. On Matthew's echocardiogram it showed that his heart function was down and that his mitral valve regurgitation was worse than a few weeks earlier. Matthew's doctors were thinking that these changes could be attributed to either rejection or a progression of the coronary artery disease. Either way, we needed to do a heart biopsy to figure out what was going on. So, we went in for a biopsy on Friday morning. Matthew did awesome!! We were in and out of the cath lab and same day surgery in a jiffy. The pathologist was in meetings all afternoon so we went home to wait for results. We got word around 7:00 pm that Matthew was indeed in rejection-- dang it!! He's having antibody mediated rejection again (the same kind that caused the coronary artery disease. The same kind that put us in the hospital for 10 days doing plasmapheresis :() We went to the hospital for Matthew to be admitted for a 24 hour treatment of IVIG and a new drug called Bordezomib. He handled all of these IV drugs great and we got home last night.
The good news is that we didn't have to take him off the heart transplant list because he is not having any cellular rejection. More good news is that we are not having to do more plasmapheresis....yet! The bad news is that we get to spend more time on the hematology/ oncology floor to get his "chemotherapy" infusions of three more doses of Bordezomib. Bordezomib is a chemotherapy drug used to treat multiple myeloma. Matthew does not have multiple myeloma, but we are hoping the drug will target his plasma cells and might be helpful in treating Matthew's type of rejection.
We are grateful to be home today! We'll just take one day at a time and pray for control of this rejection episode. Taking a break from movies, games, and tv has been a big blessing in our home. It removes a lot of distractions. Josh, Luke, and Matthew have had a lot of creative play time with one another which I LOVE! We will continue to keep you in the loop.
The good news is that we didn't have to take him off the heart transplant list because he is not having any cellular rejection. More good news is that we are not having to do more plasmapheresis....yet! The bad news is that we get to spend more time on the hematology/ oncology floor to get his "chemotherapy" infusions of three more doses of Bordezomib. Bordezomib is a chemotherapy drug used to treat multiple myeloma. Matthew does not have multiple myeloma, but we are hoping the drug will target his plasma cells and might be helpful in treating Matthew's type of rejection.
We are grateful to be home today! We'll just take one day at a time and pray for control of this rejection episode. Taking a break from movies, games, and tv has been a big blessing in our home. It removes a lot of distractions. Josh, Luke, and Matthew have had a lot of creative play time with one another which I LOVE! We will continue to keep you in the loop.
Wednesday, February 1, 2012
Hurry Up and Wait
Here we go... it's official- Matthew is on the heart transplant list again!! Since my last post things have been crazy busy! Once we did more bloodwork and testing we discovered that Matthew had a false positive read for the CMV virus the first time he was tested. What a HUGE relief!! This meant that there would be no set backs or delays in the process to re-list Matthew. I had two trips to PCMC last week and one appointment with Matthew's pediatrician. We got all the meetings completed, bloodwork done, and papers signed. We got word yesterday that our insurance approved Matthew and that he is now officially on the list as a status two.
Why is this so exciting? I keep asking myself that today! He seems healthy. He's definitely happy. I remember the last transplant all too clearly. If only his outside appearance could tell the whole story! I remember thinking similar thoughts two years ago. I was skeptical about the whole transplant thing. We got "the call" 3 1/2 weeks after his listing. Driving to the hospital that night for surgery was one of the hardest things I've ever had to do. Come to find out, after the transplant surgery, Matthew's heart was much worse than we expected. The surgeon said Matthew's heart was really ischemic probably from the heart attacks he'd most likely been having. The surgeon said that Matthew wouldn't have had much more time without a new heart. And so with all of that fresh on my mind, we wait. I know it's the right thing to do. It just doesn't make any of this easier!
Having your son on the heart transplant list is a wierd thing. I've never felt so much conflict of emotion. Here I am every day and night praying for a miracle for my own son. Immediately after asking for a miracle, I feel so much guilt. Guilt because I know that in order for Matthew to experience a miracle, some other mother has to experience heartache. I really struggled with this after Matthew's last transplant. In the end, I guess I have realized more than ever that God's will will be done. I'm not in control- God is! What ever is meant to be will be. Coming to terms with that is a bittersweet realization. It's hard to apply that principle to your own son's life.
A lot of people ask how the transplant process works. The country is divided into regions depending on distance. Time is of the essence in the transplant world. Utah is in Region 1 with California, Nevada, Arizona,& New Mexico. Each transplant candidate is given a status. 1A being a child in the hospital on an IV or some life saving device, 1B was Matthew's status last time (he was a failure to thrive-- his gastric tube and night time nutrition for the past 18 months has helped his "thriving" quite a bit :)) then there's a status 2- Matthew's status. Matthew is also O type blood which is the universal donor, but not the universal recipient. He has to get an O heart. Also, he has a lot of antibodies we are dealing with now that we were not dealing with before. We have been told that Matthew is only eligible for 33% of the hearts within his blood type based on his antibodies. To say the least, we are not anticipating a 3 1/2 week wait this time. We are thinking he will be on the list for awhile.
Anyhow, onto brighter topics. Matthew turned 4!!!!! Every birthday we celebrate with Matthew feels like a huge success to me! Thank you- so many of you who were so wonderful to him on his birthday. Matthew definitely felt the love of so many that day. Matthew wanted a bunk bed for his birthday. You see, Josh and Luke have been sharing Luke's bunk bed for awhile. The rule in our house has always been that you have to be four before you can have a "sleepover." Matthew wanted a bunk bed to sleep 5- so that all of us could sleep in Matthew's room on sleepover nights. Because they don't make bunkbeds to sleep five (and Matthew's room is way too small for that anyway :)), we found a bunk bed trundle bed that sleeps three- perfect to fit both of his brothers and himself. Matthew has been SO happy hosting sleepovers every night for any brother who is up for it. I love to watch Matthew's relationship with his brothers develop. Matthew and Luke have become good little buddies.
So, life is good. We continue to enjoy each day and every moment as a family. Joshua's school class is participating in a "media fast" this month. Our entire family is not suppose to watch tv, movies, listen to music other than classical music, do facebook or social networking, or play any gaming device. I guess blogging might be considered social networking-- oops! I consider it more of journaling. Oh, well! Anyhow, today was the first day. It's a blessing to remove some of these distractions from our home so that we can enjoy quality time together. I am loving it already- the timing couldn't be better. So, unless something BIG happens, I probably won't blog until March. We love you all and appreciate your continued support.
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.
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!
Subscribe to:
Posts (Atom)