And the journey continues...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We hope everybody is doing well this Holiday season! Life is always busy in December and it's been a great blessing this year as it keeps my mind off other "stuff." Although, lately the "stuff" has been pretty good. Matthew is still trying to fight off the cold Luke shared about 2 months ago. It's crazy, it seems to come and go, but everybody has been healthy here and he doesn't go anywhere else- so we are assuming it's the same bug. Matthew has had 2 ear infections as a result and has been treated with 2 antibiotics. Because he's on an antibiotic, he gets diarhea and because he has diarhea it messes up Matthew's absorption of his anti-rejection meds. So, lately we've been getting blood drawn more frequently. As it turns out, he hasn't absorbed one of his meds at all as it was "undetected" in his blood work. Matthew's cardiologist was going to continue with the wean of his steroids this month, but we are going to hold steady until we can get his blood levels where they need to be. I guess this is why I am confined to home still-- his body has a hard time fighting off ANYTHING. Even minor illness ends up being a big deal.

Matthew has some minor surgery scheduled for this Tuesday. He is getting his tube in his belly switched out for a button. I am certainly grateful we got that tube even though we fought against it for a long time. It is much better than an NG tube. Matthew is still not eating much, so he gets 95% of his nutrition through his tube.

As for the rejection, at Matthew's last appointment his echo and everything still looked great. We are just hoping and praying that things continue to look good. If so, we won't repeat a biopsy until February.

We hope everybody is doing well and gearing up for the most amazing time of the year. Love to all!!

I read this quote the other day and it's been my motivation this week: "Life is hard, but life is simple. Get on the path and never, ever give up. You never give up. You just keep on going. You don't quit, and you will make it." Lawrence E. Corbridge

I'll start with all the good news that we've received, because truthfully, we have been blessed in so many ways. On November 2nd Matthew had his vesicoureteral reflux follow up study. We were told just before Matthew's transplant and after his last nuclear sonogram that Matthew still had grade III reflux which was unchanged since they discovered it at birth. Urology told us that Matthew would need surgery 6 months after Matthew's transplant. So, we went to our appointment fully expecting to go home with a scheduled surgery date. After the study, when we met with Dr. Wallis, he told us that Matthew had grown out of his reflux and that he could not see ANY reflux on the sonogram. Dr. Wallis continued to tell us that this was very uncommon. Usually, when kids grow out of reflux they grow out of it a grade at a time and they hardly ever see improvement in six months time. He told us we could discontinue Matthew's prophlaxis dose of antibiotics and that we didn't need to see him again unless Matthew got a urinary tract infection. Yippee!!! We eliminated one specialist and one drug from the list.

On Monday, Matthew had his heart catheterization and biopsy. Things looked so good!! His pulmonary pressures and diastolic function finally normalized. Matthew's echo looked great and his EKG looked perfect. We didn't have the pathology report from the biopsy back yet, but after talking to the cardiologist we all felt confidant that Matthew was finally over his rejection and his heart had recovered. After a VERY long day at the hospital I called Matt on the way home to share the great news with him. I told him that I felt like I could sigh a huge sigh of relief for the first time since Matthew's transplant. Then we joked about how everytime we allowed ourselves to feel optimistic about anything was usually when things changed. Then..... we got the pathology report back. Matthew has cellular and vascular rejection and he has it worse than the last rejection episode. The transplant team called and told me that they weren't going to treat it with high dose steroids. They felt like at this point, continued high doses of steriods may not be good for Matthew. They feel like because everything else looked good we are going to wait and see what happens and hope that Matthew's body will take care of it on it's own. Monday night and all day yesterday were super long days for me as I tried to wrap my head around what was happening and what could happen as we look to Matthew's future. It's true, we have always known that transplant is not a cure. We know that Matthew is still very sick. But still, we were hoping to make it through the first year with no rejection episodes and now he has faced two episodes in the first 6 months. I know that Matthew has the best medical care available and that he is on the very best drugs they make. Still, I am scared! I am scared that modern medicine may not be enough. I am scared to recognize the limitations of medicine and realize that we are running out of options.

Today I went back to Primary Children's to get a chest Xray. Matthew gets continuous feeds during the night and woke up in a coughing rage which kept him up all night. They felt like maybe he had aspirated some of his feeds and had pneumonia. Luckily, his chest Xray is clear. He probably has another virus they say. He also had some complications on Monday when he was extubated after his biopsy his airway closed off so they had to re-intubate him. The transplant team thought maybe there was some residual irritation that was caused by all of that. Who knows? Only time will tell I guess.

In the meantime we will continue to stay on the path and never give up. We will keep going day by day and sometimes minute by minute.