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!
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!
I love Matthew. He deserves the best.
ReplyDeleteThe choking would have been so scary. How great that you had the help of people at church and a physician to help. I think about you all the time.
ReplyDeleteWOW! What a summer. So scary. Choice spirits indeed! and choice daughtr of God as their mother too. You are amazing.
ReplyDeleteXO
So glad to read your update. I hope things get better and that the doctors are inspired to what is best for Matthew. You are one amazing mom!!
ReplyDeleteAlso have you ever been able to get in contact with the donor family? I know when we talked last you hadn't. Email me sometime when you get a chance or call anytime I'd love to visit with you.
ReplyDeleteamy@savillefamily.org or 208-251-1362
Wow. Chrissy, you are so amazing. And you really do have the sweetest boys in the entire world. That little Matthew is such a tough guy... He is so lucky to have a momma like you!
ReplyDelete