tag:blogger.com,1999:blog-65792626430919467332024-03-05T23:34:59.802-08:00Sperry Family TimesMatt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.comBlogger66125tag:blogger.com,1999:blog-6579262643091946733.post-91456152633051463132012-08-10T19:09:00.000-07:002012-08-10T19:09:58.093-07:00Fighting through the TempestI can't believe that it has been so long since we last updated our blog. For all of you faithful followers, we apologize. Nevertheless, the adventure continues.<br />
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Matthew Jr. is still in the hospital. It has been well over 100 days now and room 3085 at Primary Children's Medical Center continues to be our home away from home. I joke that we now have an exclusive apartment in SLC that rents for about $7500 dollars a month. I wish that it was more spacious but the care is excellent. Matthew is still happy despite all of the trials he is faced with on any given day. Since we have been here matthew has had numerous PICC lines, a Broviac, two PICC line infections (one that almost killed him), blood clots, Lovenox shots twice a day for 2 months, daily diarrhea, stomach pains, knee pains, hand pains, and just about every orifice and body part probed. Its not fun to watch but amazingly he continues to be happy . . . most of the time.<br />
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I'm not sure I want to rehash the last several months but I can at least give you details on the last two weeks. To add to the stress of having a chronically ill child, Chrissy had surgery last Monday. It went better than expected but at the time we were certainly scared that something else could go wrong. We then flew to San Diego to pick up Joshua and Luke who had been spending time with their aunts and uncles there and in Arizona. We arrived Thursday but our relaxation was cut short when our parents called us Saturday night to inform us that Matthew was very ill. We got Chrissy home early on Sunday morning and I flew home with the boys. That was an adventure in itself . . .flight delays, fire detection failures on engine No 1, new planes and what should have beena 3 hours travel day turned into 12. When we arrived, Matthew Jr. was truly very ill. He developed a bad infection with a bacteria called enterococcus. They think that it came from his gut and it decided to land and grow on his central line. Dr. Everitt spoke to Chrissy and myself and told us that this could be the infection that ended up killing Matthew Jr. Thankfully, he seems to have ralied with the assistance of antibiotics. They haven't taken the line out yet, but that looks like what is going to happen this weekend.<br />
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On a brighter note, for the last little while we have been trying to arrange a meeting with our donor family. We wanted to meet them and they wanted to meet us, it has just taken a little while to go through the proper channels to make things happen. This afternoon we finally got to meet the Gonzalez family. I cannot say enough positive and appreciative words to thank them for a gift that we cannot repay. Their selflessness and willingness to donate organs has been such a blessing in our lives. They are the most amazing people. I hope that they enjoyed our meeting as much as Chrissy and I did. What an amazing family.<br />
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I wish that I was more expressive at this time. I know that now that we have remembered our password that Chrissy will probably give a much better update than I have. My head and heart are filled with emotion this Friday night. Many things I am grateful for, many other things frustrate me. I guess that such is life. <br />
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We again want to thank all of you for your kind support and love towards Matthew Jr. and our family. This part of our life could not be done without the support of all of you. Plain and simply could not be done. I pray that we make it through it. Goodnight.Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com6tag:blogger.com,1999:blog-6579262643091946733.post-85027011316975370142012-05-29T22:00:00.001-07:002012-05-29T22:02:27.409-07:00My Little StarI can't believe it's almost June! Where did February, March, April and May go? I feel like Bill Murray in the movie "Groundhog's Day". Each day is the exactly the same with a few differences. Today Matthew and I decided to mix things up a bit. Matthew stood on the base of his IV pole while I pushed him around the hospital halls. The cleaning guy just cleaned the floors so the orange cones were still up. These cones quickly became our targets. Matthew pretended the cones were zombie hats (if you have the app plants vs. zombies you know exactly what I'm talking about) We had a great time crashing into cones for quite some time. I love hearing Matthew giggle out loud!! It's one of my favorite sounds.
Matthew is out of CICU and back to his happy little self. We've had a few "issues" this past week but I feel like we are in a better place. Matthew is taking Lovenox shots twice a day to treat his blood clots. His poor little legs are black and blue- poor sweet baby!! He started getting anxious every time the nurse came into the room. We made a sign for the nurses to hold up when it's shot time so he knows when to expect it so he doesn't worry about it all day. I'd like to say it's getting easier but it's not! His cries still break my heart with each and every shot. They tell me he'll need these shots for the next three months. Thank heavens I don't have to administer them myself while he is inpatient here! Another "issue" is that Matthew is neutropenic. His ANC was 400! The medical team is not sure why his white count is so low but decided to start Neupogen shots to help release the immature WBC from his bone marrow to increase neutrophils. So far it is working. The transplant team said that if Neupogen doesn't work we will have to consult with Hematology. I don't like the sound of that so I'm praying really hard that the shots work. Our latest problem is that Matthew's new PICC line which was placed 6- I repeat- 6 days ago is not working properly!! One of the lumen's is not flushing or drawing back. We will come up with a plan for that tomorrow. We can't leave a one sided clotted PICC in Matthew because of the risk for infection. They may try to rewire this PICC or in rounds today the idea of a broviac was casually mentioned. A broviac placement would require surgery to place it. We'll see where tomorrow leads us.
On a lighter and funnier note, Matthew made it on the front page of Monday's Deseret Newspaper. Deseret News came by the hospital to interview Matthew and I last week. I think we had way too much fun! Here's the link to the article:
http://www.deseretnews.com/article/765579078/Personal-investments-from-Primary-hospital-workers-help-families-cope.html
This week is Primary Children's telethon- their biggest fundraiser of the year. They have been prefilming content for their aired telethon for over a month now. Because we have been in the hospital for the entire month and we signed the consent a long time ago, the foundation has been hitting us up for all kinds of pictures and stuff. Apparently Matthew and I are in a commercial which is currently airing and Matthew helped to make a music video. The telethon will be aired on June 2nd. So, please watch to tell me if they included any embarassing shots like me and Matthew running over the cleaning man's cones with Matthew's IV pole and please donate to this fantastic hospital who's physicians and staff have prolonged Matthew's precious life on many occasions. Our gratitude to the physicians and nurses who have spent countless hours caring for Matthew can never be expressed in words.Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com5tag:blogger.com,1999:blog-6579262643091946733.post-62646609359432108322012-05-22T07:00:00.000-07:002012-05-22T07:00:07.110-07:00Moving DownMy heart has been full of so much emotion over the past week. All of my emotions came to a head last night and I think I may have had my first mini breakdown here in the hospital.
First of all, yesterday marked our five weeks since admission anniversary. I can't believe I've been here for that long! It's not fun being here--at all! I miss Josh and Luke. I miss Matt. I miss Tball games. Soccer games. Being present for the end of the school year events at the kids school. I miss my shower. My bed. My kitchen and cooking. My functionality at home. Etc. Etc. Some days are long. I feel like I am running out of creativity. Matthew is used to all of my tricks and we've been as creative and playful as one can be confined to a small hospital room. Sometimes I get discouraged and then I try to think of each day here as a gift. I know there will come a day when I would give anything to have one of these with Matthew here at the hospital back. Being with Matthew is the silver lining in all of this. Who gets to play with their child all day, every day? I do. When I get discouraged, I try to remember this and savor each and every moment.
Secondly, Matthew's angel heart anniversary and two year transplant anniversary was Saturday, May 19th. I think a lot about the little donor whose parents selflessly gave Matthew the gift of life two years ago. Without them, so many memories and experiences would never have been known. I continue to be overwhelmed with gratitude for them. Even though we never had the chance to meet our donor family, I feel connected to them. Which makes being on the transplant list again hard for me. I love this little heart in Matthew's chest that beats so valiantly. I have listened to it almost every day for 2 years. Never has a mother been so grateful for the sound of a beating heart than I have been each time I hear it's beat. There are still a lot of feelings of guilt associated with being the mother of an organ recipient for me. I try to realize I was not the cause of any tragedy and that hopefully the family felt some comfort in knowing that their child has lived on in Matthew. The thought of going through all of these emotions again with residual emotions from the previous donor about kills me. I continue to pray, not for a heart, but that if a parent is placed in a situation where they could be potential donors that their hearts will be softened and they will say yes.
Lastly, and the "straw that broke the camels back" Matthew has not been doing great. It started with severe arm and hand pain in his PICC line arm. They did an xray and things looked great. They contributed this pain to his peripheral neuropathy and increased his dose of Neurontin. Three days later he spiked a fever (Sunday night). Immediately they thought PICC infection. They started Vancomycin and Rosefin Sunday night. They drew blood 6 times!!! Checking for all kinds of things Sunday and Monday. His hemotocrit is low again. They pulled his PICC line which meant his Milrinone is running in his peripheral IV which is not as effective as a deep or central line. They did an ultrasound of his arm and found three clots associated to his PICC. All things considered transplant felt we were safer moving downstairs to the CICU where Matthew could be more closely monitored. Receiving this information was a complete bombshell and took me by surprise. Hence, the mini breakdown. As I was packing up all of our belongings from the room we've pathetically and accidentally called home a few times, I about lost it. At this point, I don't know a lot. Matthew received a blood transfusion last night. He seemed to be doing better by the time we were transferred to CICU. I think we caught the infection early and we are on top of it. He is still on the transplant list. We will deal with a new access and treating the blood clots today. They wanted to rule out a GI bleed which could explain a low RBC before they give him Heparin or Lovenox- which completely makes sense.
Anyway, my mandatory hour of leaving the ICU between 7-8 is up and I'm dying to get back to my guy. Keep praying for him. Please!! I love this little guy so much. I just want whats best for him and sometimes I'm not sure what that is anymore. Still, I have not given up hope and I will continue to fight for him with all my might. Thanks for all of your love and support!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com10tag:blogger.com,1999:blog-6579262643091946733.post-81412392374618285522012-04-25T21:26:00.001-07:002012-04-25T21:26:24.468-07:00All cried outWhat a long day! I figured I'd finish it off with updating my blog since so many of you are anticipating the outcome of our meetings today.
Matt was post call today and didn't get much sleep last night. Call really means "30 hour inpatient shift". These are long days for Matt. Matt was a good sport to agree to come to the hospital and participate in such deep and emotional conversations when he was going into them feeling worn down. Our meetings started at 2:30 with the palliative care team here at Primary Children's hospital. The last hour of our meeting the transplant team joined us. We talked to everybody for 2 1/2 hours.
Transplant told us that after a long review of the literature, the CV surgeon and the rest of the team felt that Matthew would not be a candidate for either the LVAD or ECMO as a bridge to transplant. The risks far outweigh the benefits and they feel like the outcome would not end well for Matthew based on past literature (which is limited anyway because there aren't too many children needing LVAD or ECMO when they are less then two years out from transplant needing another heart). Furthermore, transplant told us that we've reached the end of the line in terms of treatment options available to Matthew. We could consider increasing Matthew's dose of Milrinone one last time in the future, but the team felt like the effects of the drug should be seen by now. Increasing Matthew's dose would also require a full time CICU stay. Furthermore, Matthew is too sick to come home. This may change in the future, but we are not anticipating his congestive heart failure getting better rather it will continue to get worse with time. We will most likely be inpatient until transplant. For now, Matt and I have decided to stay the course hoping and praying that, if it's the Lord's will, a heart will come for Matthew. He is happy and playful for the most part. You certainly would never guess that he was in end stage heart failure. If we start seeing other systems begin to fail, we want to take him home on hospice. There have been evidences of some organ damage as a result of his heart failure with his bowel and his gallbladder. So far his liver and kidneys (failure of these organs would require Matthew to be taken off the list) are doing okay. I am nervous because his kidneys are working extra hard as we are giving Matthew 3 dieretics 5 times a day to help remove the extra fluid his heart cannot get rid of on it's own. Matthew has lost over two pounds of fluid since we were admitted 10 days ago. I just wonder how much more his poor kidneys can handle. Transplant admitted that finding a good match for Matthew will be difficult because of his antibodies and his O blood type- he has to take an O heart. Matthew was listed as a status 2 on January 31st and then bumped up to a status 1A on March 15th. Transplant has only had a few offers which ended up not working out because of additional antibodies not listed in the system. This is discouraging! The rest of the conversations were based on Matthew's death. What we wanted, different scenarios of his death, what treatments we could withdraw from and when, DNR at home or at the hospital. On and on and on..... I literally think my tear ducts dried out from the tears I shed in that room!
Sorry to be Debbie Downer, but that is the reality of our day. I really appreciate the love, support, and prayers from so many of you that have literally carried us through this day. Thank you!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com12tag:blogger.com,1999:blog-6579262643091946733.post-16738645402648739632012-04-19T23:09:00.000-07:002012-04-19T23:09:33.529-07:00And, we're backMatthew was discharged from the hospital last Friday night. By Saturday I noticed increased nausea and vomiting. The little voice in the back of my head told me I needed to call transplant, but my mind got the better of me. I knew we had been in the hospital the night before and chalked up his increase of symptoms to fatigue from his previous hospitalization. Sunday was a big day. Matt was getting back into town Sunday night from a conference he had attended the week before in Arizona. Joshua was being presented in sacrament meeting as a graduate from primary and was going to recite an article of faith and bear his testimony. I was also asked to go to primary on Josh's last day to talk about how "The faith in God" program was a blessing in our family. My great friend and visiting teacher, Kathryn Hart, agreed to come and sit with Matthew while I went to Primary but I just couldn't miss supporting Josh for sacrament meeting. I never feel good about asking somebody else to miss sacrament meeting so that I can attend- so I came up with a plan. Matthew was coming with me- I'd sneak in the very back and then leave right after the sacrament. It seemed to work, but when I got home I realized that the 20 minutes we were gone completely wore Matthew out. He perked up for Kathryn when I went to Primary to support Josh on his last day. When things settled down a bit I realized that Matthew was the same as he had been the day before. I paged the transplant coordinator who was on call on Sunday and she told me she thought we should come in first thing the next day to be seen. <br />
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On Monday morning we did bloodwork, an echo, and had a visit with Dr Tani. Based on Matthew's labs and his clinical findings Dr Tani felt Matthew's heart failure had gotten worse. Matthew's BNP went from 600 to 1500 in a matter of days. We were admitted to the CICU for an increase of Milrinone. Matthew is super fluid over loaded so they increased Lasix to three times a day and started Diuril and Aldactone to better dierese his extra fluid. Because his gut cannot even handle Neocate at a small rate through his G-tube (and he wasn't meeting his daily caloric needs anyway) they started TPN along with some additional lipids. <br />
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They decided to transfer Matthew out of the ICU tonight- so we are on the floor now. Matthew is technically on a dose of Milrinone that should keep him in the hospital to be monitored. To be honest, I feel like Matthew's care is over my head at this point. He is so sick already and his symptom changes indicating problems are so subtle that I'm afraid I'll miss something if he comes home.<br />
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Matt and I have an appointment with the CV surgeon, the transplant cardiologists, palliative care, the social worker, and GI to discuss the progression of his multi systems beginning to fail and the possibility of using an LVAD (left ventricular assist device) as a bridge to transplant. This meeting will take place next Wednesday when the transplant team gets back from a conference they've been attending this week. I'm not sure how Matt and I feel about the LVAD. The placement of this pump would require open heart surgery and a full time CICU stay until transplant which could take awhile still. I feel like things could get real ugly real quick and I'm scared!! <br />
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I'll keep you updated after we know more. As you know this whole process is a day by day process. Things change so quickly. Please pray for Matthew!!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com8tag:blogger.com,1999:blog-6579262643091946733.post-4822586188829806962012-04-14T08:52:00.000-07:002012-04-14T08:52:56.656-07:0030 days....and countingHappy Spring everybody! I have loved seeing the flowers bloom and the grass green over the past few weeks. There's something about spring that rejuvenates my soul and gives me renewed energy. <br />
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Easter was amazing! I had a really spiritual experience on Easter morning. The kids woke up happy to start looking for their Easter baskets. Matthew had thrown up first thing when he woke up and wasn't feeling great, but he was still determined to get going. Seeing Matthew with little energy hooked up to his backpack of Milrinone and connected to his IV pole with his feeds while looking around the house for his Easter basket was a humbling sight. I got tears in my eyes as I watched him and contemplated what we were celebrating Easter morning. I realized at that moment stronger than I ever had that Matthew would be healed from his physically imperfect body one day. I felt so strongly that we would all be reunited one day together as families on the other side of the veil. Of course, I've known these things for a very long time. For some reason, on Easter morning, these truths were seared into my soul.I think this was Heavenly Father's Easter gift to me. <br />
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I have to apologize for being an inconsistent blogger. I must admit that sometimes I try to wait to blog until I have something positive to blog about. It seems like lately the good news is few and far between :( Nonetheless, here's the Matthew update:<br />
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Matthew's red and white blood count have been low for many months. Because he has spent so much time in the hospital, the medical teams were attributing the lower red blood count to the frequent inpatient blood draws and the white blood count to the chemotherapy drug and other immune suppressant medications Matthew was on. As we spent more and more time away from the hospital and got further out from taking the Bordezomib, we did not see a huge change in his red or white blood count production. While he was inpatient one of the times these past few months, Matthew had blood in his stool. The theory was that his RBC was lower possibly because of a GI bleed or several viruses he could have that can lower the production of RBC. And so the testing began. They took a ton of blood (ironic right) and scheduled him for an endoscopy and colonoscopy. The plan was for Matthew to stay for a 23 hour observation after the procedures and get an IVIG infusion while he was there. Matthew tolerated the procedures well and we now have many internal pictures of Matthew's colon and intestines to put in his scrapbook :) GI did not find an active bleed, but we gave him some because they took biopsies :-/ There were no ulcers either. What they did see is some evidences of ischemia in his gut but only in sections- not the entire gut- the pathology also confirmed these findings. I tell Matt that as soon as Matthew is admitted it's like being in a vortex. I feel like with each day we get sucked in deeper and deeper and there's no way we'll ever go home! 23 hours came and went. More tests were ordered and a CT angiogram was scheduled. The results from the angiogram told us that there was no blood clot or any other blockage leading to his GI system that would explain the ischemia. We also saw on CT that his liver and gallbladder are enlarged...probably from Matthew's heart failure. So, Matthew was admitted being in heart failure...we spent three days in the hospital and spent thousands of dollars on tests only to find out......Matthew's in heart failure. Sometimes I get frustrated! We couldn't proceed with another heart transplant though if he did have a GI bleed somewhere or if he had a clot somewhere. I guess being able to proceed with our next transplant still is the good news to report here. The bad news is that his heart failure is affecting other organs and I'm not sure how long they can hold out before permanent damage is done. Matthew has been on the list as a 1A for 30 days today. The average wait according to UNOS as a 1A is 38 days. I feel like we are racing against time and I'm not sure what will come first. I hope and pray Matthew can receive a heart quickly and we can move on from this nightmare! until then, I try to find peace in the spirit of Easter which I felt so strongly this week.Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com5tag:blogger.com,1999:blog-6579262643091946733.post-39715069629567864722012-03-26T08:23:00.000-07:002012-03-26T08:23:00.294-07:00Home sweet homeMatthew was discharged from the hospital last Tuesday. Once again we are home as a family and I LOVE it!! I got so sick of packing and unpacking that I packed a permanent bag that stays in the van until it's needed next. Hopefully the next time I use that suitcase will be when Matthew gets a new heart!<br />
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Matthew came home with a PICC line and 24/7 Milrinone. He is the cutest boy you've ever seen carrying his back pack around with his medicine and his medicine pump. Nothing slows him down or ruins his mood... not even heart failure and a 4 pound bag he has to carry with him everywhere he goes. <br />
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Matthew is MUCH better than he was prior to this last hospital admission. They call Milrinone the "wonder" drug. I would have to say that I agree! He is playful and happy. He does not lay on the bed and moan all day long. I am so glad to see such a great improvement in him already. As for his peripheral neuropathy, it is better too! The neurontin seems to be helping him quite a bit. We have begun the weaning process of his Neurontin to see if he still has symptoms without the drug or if his neuropathy was a temporary side effect of the Bordezomib. Please pray that these symptoms will not reappear with the weaning of the drug. <br />
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Cardiology has not given us a time frame at all for how long they are predicting it will be before Matthew gets another heart. Matthew's cardiologist said that "only God knows when that will be." We are not only matching his O blood type, we are also matching his antibodies. Last night Matt and I could not help ourselves and we got onto the UNOS website. From there we clicked on a link that posted all the information about who is currently listed and waiting for a heart. The website is really helpful because you can break it down to region or state, blood type, status, pediatric or adult, etc. Matthew is the only status 1A in Utah but there are currently 5 status 1A's with an O blood type waiting for a heart in region 5. Of those, Matthew is the only one who is waiting for his second heart. Dr. Everitt's prediction that only God will know when Matthew gets a heart is completely right on. This transplant is a lot more complicated than the first. We are matching so many antibodies along with his blood type that we were not matching the first time around. Sometimes I wonder if a match will ever really come along. Since Matthew has been sick I wonder if Matthew can hold out long enough to get "the perfect" match. Matthew's white count has also been really low. This really scares me because he now has a PICC line... and he's 4!!! Little 4 year old boys like to get dirty! I feel like I follow him around all day with alcohol swabs cleaning his tubing and as much of his line as I can to avoid an infection. <br />
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I also continue to struggle with the concept of transplant. I know what it will take for Matthew to receive a heart. It will require heart ache and loss from another mother. This is hard. As I pray, I find myself asking not for a tragedy to occur but for hearts to be softened in the event of a tragedy so that donors can be available. It took me a long time after Matthew's first transplant to get over the guilt of feeling like I caused a sweet little boy to die in order for Matthew to receive a heart. It was a conversation I had with my mother that made me realize that I had not caused this event. What happens will happen whether Matthew is on the transplant list or not. Only God knows what will happen to all of us in this life. Only He knows when our eartly mission is complete. So I can't feel guilt. I can only pray for comfort for so many of us in so many different but difficult situations. Then I wait, and have faith. Faith in God's plan for Matthew, whatever that plan is. Faith that everything is going to be okay, no matter how things turn out. <br />
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Through it all we continue to recognize that we have been so very blessed and that so many miracles have taken place in Matthew's lifetime. We truly are humbled and grateful for the many blessings which we have received.Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com2tag:blogger.com,1999:blog-6579262643091946733.post-62343018884562142222012-03-17T21:58:00.000-07:002012-03-17T21:58:23.372-07:00Heart failure and a 1A statusWhat a week!! Whenever I feel like things can't possibly get worse, they do! I'm exhausted so I'm going to write a quick update. Last Tuesday we were scheduled to get a chemotherapy infusion. We had done labs in the morning and were waiting in Oncology's infusion center when Dr E came in to review the labs. Although Matthew had been seen by cardiology twice the previous week, Dr E had not seen him for ten days so she wanted to check in on him real quick. She took one look at him and said "He's not getting his infusion today!" She ordered an echo and an ECG and started his paperwork for a direct admission to the CICU. Matthew's echo looked fine, but once we got to the ICU his heart looked huge on chest X-ray and his lungs showed pulmonary edema. They started Matthew on a milrinone drip and watched him in the CICU for three days. Now we are on the floor. Matthew got a PICC line placed and we are hoping to get out of prison soon. Matthew's hemoglobin and hematocrit have been low and his BNP is really high. Matthew's limbs have been "hot" and he feels like "needles" are stuck in his fingers. As it turns out, he's having a lot of non-specific and very specific pain related to peripheral neuropathy which he developed as a side effect from the Bordezomib. It was a known risk, but we really had no other choice in order for us to get on top of Matthew's rejection. I hope and pray that this is something that will go away!!! He is now on neurontin (a seizure medication- why not? That makes the grand daily med total for Matthew 13!!!) We still have some issues to work out before being discharged, but our goal is to get Matthew home on 24/7 milrinone. The bad news....Matthew is in heart failure. The good news....Matthew's heart transplant status has been changed to a 1A from a 2. <br />
My head is still reeling. I think I may be in a little shock. Things in the "heart" world always happen much differently than expected.<br />
Thank you all for your love and support. We could NEVER do this without you!! Our ward and neighbors have been awesome! My parents and Matt's parents have been helping non stop. We have been blessed and we are grateful!!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com2tag:blogger.com,1999:blog-6579262643091946733.post-22312403675380755272012-03-12T08:40:00.000-07:002012-03-12T08:40:46.951-07:00Home againWe've been home from the hospital now for a week. Matthew is a superstar! The only glitch in the hospital was that after his dialysis catheter was placed and they started the first plasmpheresis, we realized that the catheter was not working as it should. We had to go back to interventional radiology the next morning to replace the catheter. Because interventional radiology uses nurses not anesthesologists to administer anesthesia, they were not able to use Matthew's "anesthesia cocktail" which has been working for him with minimal side effects. The radiologist assured me that Matthew would be fine waking up from the anesthesia they were using as long as he was not woken prematurely. This was far from the case. Just like in times past, Matthew woke up thrashing with his post anesthesia psychosis and was like that for the remainder of the day. I absolutely was not going to allow them to use the same anesthesia they had used the day previous to re-do the catheter the next morning. Everybody in the CICU was completely on board with me after seeing him that first day. So, the CICU organized their own team to come down with us to radiology so that they could give him his propaphol and phentanyl- and guess what?? He woke up great with no side effects!! Matthew spent three days in the ICU and then moved to the floor for the remaining 9 days. He tolerated his treatments well. In typical Matthew fashion he won the hearts of all the hospital staff who dealt with him. <br />
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On our last day in the hospital, Matthew got an IV/IG infusion and then got his first dose of Bordezomib. Plasmapheresis is an acute way to remove the antibodies from Matthew's blood. Bordezomib is used to stop the production of memory cells that are made which are the culprit for antibody mediated rejection. Matthew did two doses of the four doses of Bordezomib before plasmapheresis, but when his heart function was declining Matthew's doctors decided that we needed to get a better handle on his rejection episode. This was why we proceeded with plasmapheresis. Unfortunately for Matthew, we had to start from the beginning with the Bordezomib infusions. Bordezomib is a chemotherapy drug used to treat multiple myeloma. They are just starting to use it in cases like Matthew's. Primary Children's hospital does not even have the drug in stock and they have to order it from the Huntsman Cancer Institute every time Matthew uses it. In fact, the nurses in the Hematology/ Oncology clinic have never heard of it. Bordezomib makes Matthew really sick!! Last Sunday, he was throwing up everything we tried to feed him through his G-tube no matter how slow the rate. He could not tolerate anything. He was admitted to the Rapid treatment unit for the day to get labs drawn and to get a saline infusion. They started Zofran which seems to have helped him quite a bit. We have been giving him that consistantly since then. We have gradually been increasing his rate and he seems to be tolerating his Nutren jr. a little better now. He's still behind on his fluids, but we are doing the best we can to give him the nutrition and calories that he needs. He will not eat anything by mouth and pretty much lays on the couch or a bed all day watching tv or playing games. He does not have energy to do anything more than this each day. It breaks my heart to see Matthew this way. He reminds me of what I would have imagined a little boy on chemotherapy to look and act like (minus the bald head of course). We are half way done with infusions!! I can't wait to be done. You have no idea how hard it is for me to drive him to his infusions knowing what the drug will do to him. I always drive there tearfully wondering if what I'm doing is really the best thing for him. I pray that these next two doses can go well and that we can be done with Bordezomib forever!<br />
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When I was in the hospital I met with "Rainbow Kids" which is Primary Children's palliative care team. There were 8 members on the team and one of me (Matt had to work). The Rainbow kids team was so wonderful! It was a hard meeting, nonetheless. We talked about what life sustaining treatment we wanted for Matthew and what would we want if Matthew were to code at home and the paramedics showed up, etc. This was not an easy discussion. I know Matthew is sick. I know that these are discussions Matt and I have had in the past. Talking about what decisions YOU as a mother would make if you had the choice in deciding if Matthew would live or if you would let him die is incredibly emotional and difficult. I know we are doing all we can for Matthew, but part of me is still holding onto the hope that he can live a somewhat healthy and normal life after his next transplant. Maybe my hopes for him are unrealistic, but I'm his mother and I just can't imagine the "other" scenario yet. I certainly hope and pray that it is a decision that I will never have to make for him. Seeing him as sick as he's been this last week also makes me realize that I don't want him to suffer like this anymore. He has fought so hard for four years and he's done it with a happy, sweet temperment. He's been through a lot these past six months especially and I see how it is getting old for him. I love this little boy with all my heart. I only want what is best for him. Usually he is so happy and full of life that it is impossible for me to give up on him. I pray that I can have the strength and inspiration I will need to make difficult decisions in the future. <br />
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So what's next? Matthew finishes his infusions, he will continue to be followed by cardiology/ hematology twice a week and then he will have a heart cath on March 26th. He's still on the heart transplant list. As far as I know, he could still get a heart whenever a match comes available. I know that this will take a long time and it's the last thing on my mind in regards to Matthew right now. I feel like I'm focused on the current hurdle and then we'll go from there. <br />
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I try to enjoy each day, each experience I have with Matthew. He is a special boy. Joshua had the opportunity to bear his testimony at our stake conference last week. He said that whether Matthew is on earth or in heaven he will go where he is needed to build Heavenly Father's kingdom. I know that Joshua is right, I just wish I knew when and where he was needed. Maybe then I could deal with things easier.... maybe!!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com3tag:blogger.com,1999:blog-6579262643091946733.post-89386491973448833692012-02-22T15:15:00.000-08:002012-02-22T15:15:43.519-08:00Napoleon Part-deuxIt 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.<br />
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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. <br />
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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.<br />
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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. <br />
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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. <br />
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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.Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com4tag:blogger.com,1999:blog-6579262643091946733.post-15638656184545700892012-02-12T13:00:00.000-08:002012-02-12T13:00:14.667-08:00More 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. <br />
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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.<br />
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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.Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com2tag:blogger.com,1999:blog-6579262643091946733.post-11112909562260505962012-02-01T21:54:00.000-08:002012-02-01T21:54:52.869-08:00Hurry Up and WaitHere 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. <br />
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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! <br />
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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.<br />
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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. <br />
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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.<br />
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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.Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com2tag:blogger.com,1999:blog-6579262643091946733.post-59278544585765405202012-01-22T13:46:00.000-08:002012-01-22T13:46:14.231-08:00Another not so uplifting updateMatthew 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.<br />
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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.<br />
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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. <br />
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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!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com7tag:blogger.com,1999:blog-6579262643091946733.post-63234450124446325682011-12-31T12:13:00.000-08:002011-12-31T12:13:49.967-08:00Happy 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!!<br />
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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! <br />
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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. <br />
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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!<br />
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Love and happy thoughts to you all for a wonderful 2012!!!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com2tag:blogger.com,1999:blog-6579262643091946733.post-19015725277521719542011-12-02T08:26:00.000-08:002011-12-02T08:26:05.232-08:00To 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). <br />
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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. <br />
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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!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com2tag:blogger.com,1999:blog-6579262643091946733.post-1655917825202269022011-11-28T14:33:00.000-08:002011-11-29T10:37:33.713-08:00I 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. <br />
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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.<br />
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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!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com1tag:blogger.com,1999:blog-6579262643091946733.post-44923371912284935612011-11-12T09:48:00.000-08:002011-11-12T09:48:40.455-08:00GratitudeOne 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.<br />
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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.<br />
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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. :(<br />
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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.<br />
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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! <br />
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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!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com5tag:blogger.com,1999:blog-6579262643091946733.post-5556617037992850082011-11-05T08:51:00.000-07:002011-11-05T08:51:49.501-07:00Home 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!<br />
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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. <br />
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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. <br />
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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! <br />
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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.<br />
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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! <br />
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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!!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com4tag:blogger.com,1999:blog-6579262643091946733.post-75508632526396104332011-10-28T12:16:00.000-07:002011-10-28T12:16:41.095-07:00Disneyworld was amazing!! I cannot thank the Make-A-Wish foundation enough for arranging the perfect dream vacation for Matthew! It could not have been more perfect- the weather, the kids loving it, and the overall experience. My favorite day was our first day in Florida. We went to Hollywood studios to meet Lightning Mcqueen and Mickey Mouse- Matthew's two wishes. I wish you could have seen Matthew's face in complete awe when he saw Mcqueen and Mater-he danced, sang, and hugged and kissed Mcqueen and Mater. I think he would have been happy staying there all day long. We then saw Mcqueen featured in a stunt show which Matthew loved. Next, we went and saw the Mickey Mouse Clubhouse live. Matthew was is heaven!! I will never forget that day!!! Matt and I promised we would not talk about anything work or medical related. It's amazing how renewing it is to take a mental break from those kinds of worries for a week! Our entire family had a great time together and we will always cherish this passed week! <br />
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We got home late on the 24th and Matthew got his dialysis catheter placed the next morning and was admitted to the cardiac ICU. He had a rough time coming out of sedation. He was not cooperative and was super fiesty. They had to sedate him again to complete his echo and then again that same day to do the plasmapheresis treatment. Everything went well in terms of Matthew tolerating the procedure. <br />
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Matthew was transferred out of the CICU and is now on the floor until next Thursday November 2nd. The plan for him is to do these plasma exchange treatments every other day for the next week. The dialysis machine is huge! It's quite the process!! It takes an hour just to get the machine ready. They take out Matthew's plasma and trade it for fresh frozen plasma or albumin in hopes that by taking out the antibodies that tend to attack Matthew's heart, his coronary artery disease may improve. We won't know if these treatments are effective until we do Matthew's next cardiac catheterization which is going to be done in about 5 weeks. So, the plan until then is to finish plasma exchange this next week. Then, Matthew will be admitted to the hospital for one day each week for three consecutive weeks to receive IVIG and Rituxan treatments to help protect Matthew from EBV and CMV and other viruses that tend to be a problem for transplant/ immune suppressed patients.<br />
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Best case scenario will be that these treatments helped reverse the damage caused by the coronary artery disease. Worst case scenario would be that at our next cath we would see no improvement with the CAD. If this is the case, Matthew would need to be re-listed for another heart and we'd start this process all over again. Matt and I have mixed feelings about this option. Matthew has been through A LOT this last year and a half. We have lots of questions that need to be answered if and when we get to that point. Right now we are trying to be optimistic and we are trying to cross bridges when and if necessary. Trying to process all of this at once is too hard and overwhelming. <br />
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Today, Matthew is happy and seems to be healthy. You would never know his sweet little body is as sick as it is! Dr. Everitt came by today and said that Matthew is getting a reputation all over the hospital as being the cutest, happiest patient in the hospital. That's my Matthew!! He's always so sweet, and so lovable to anybody who knows him! <br />
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We appreciate all of the prayers and support from all of you! Please keep them coming!! There are definitely good and bad days. The strength that comes from your prayers is what keeps us going on the bad days for sure.Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com4tag:blogger.com,1999:blog-6579262643091946733.post-50623767646034966192011-10-12T22:24:00.000-07:002011-10-12T22:24:04.035-07:00Whirlwind of a week...Has it really only been three days since my last post??? It feels like an eternity! I am grateful, more than ever, for your continued love and support this week! I feel strength from your prayers and appreciate that very much! Sometimes I feel like this strength alone is what is sustaining me during some hard times.<br />
So, to start with the good news- Matthew's heart catheterization went much better than I had anticipated in terms of handling the procedure. Dr. Gray was done in a mere hour and fifteen minutes! Matt and I were shocked when the cath lab pager went off. We found out his pressures looked good and he handled things without coding this time-- such a relief!!<br />
I knew something was wrong when the entire transplant team was sitting in the cath lab office waiting for us when we got there. I think the first words out of my mouth when I saw Matthew's cardiologist (Dr. Everitt) was "oh no!!" Not, that I wasn't glad to see her- I love that woman, it is just not the normal post-cath routine. Dr. Gray and Dr. Everitt then told us that Matthew's coronary arteries looked "ratty." They found significant narrowing of multiple coronary arteries. Matthew's left heart cath in April of this year showed no signs of CAD. So he has an acute development of the disease and we don't know how quickly it will continue to progress. Coronary artery disease is the number one killer in transplant patients 1 year out from transplant. There is not really a good treatment or cure for it. They have started Matthew on three new medications to try to help with CAD. One of the meds he started is Aspirin to thin his blood. We have come full circle, and once again Matthew is at risk for sudden death caused by a heart attack. These past few days have been really difficult for me and Matt to process and comprehend. <br />
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The silver lining in all of this is that cardiology is going to let our family go on our Make-A-Wish trip to Disneyworld to let Matthew meet Lightning Mcqueen. For all of you who know Matthew really well, you know how big of a treat this will be. We did not tell our children about this trip because honestly, with all of the problems and concerns we've had with Matthew, we didn't think going on this trip would be a reality. When Dr. Everitt told us the bad news on Monday I tearfully asked "well, can we at least take him on his trip to Disneyworld then?" This week we are focusing all of our energy on getting excited about our trip. We are trying not to worry about the "what if's" and the "what are we going to do's" this week. It is so fun to watch the kids giggle and talk about all the exciting things they will get to see and do while we are there. I cannot wait to leave our worries in Utah and get away with the family for an entire week!<br />
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The day after we get home, Matthew will be admitted to the CICU to undergo plasmapheresis. Basically, it's like dialysis. They spin Matthew's blood to separate the plasma from the antibodies that are contributing to the CAD problem and then they give Matthew his plasma back. It's a long shot, but hey, miracles have happened in Matthew's life before- why not now?? Transplant plans to have him repeat his heart catheterization in a month to see if the treatment helped slow or maybe reverse the damage done to the coronary arteries. If this is the case, we will wait and watch him very closely. If it has not improved or if things have gotten worse, we will begin the process of re-listing him for another transplant-if that's what we decide to do.<br />
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I have heard questions like "How did this happen?" or "wasn't the donor heart perfect?" Well, before Matthew's diagnosis I used to think that coronary artery disease was what old men got when they ate too many cheeseburgers and had high cholesterol. This is not the case in transplant recipients. Because of his donor specific antibody rejection and his ongoing cellular and vascular rejection this disease in Matthew has developed. He did have a perfect heart given to him which was an amazing gift for which we are grateful for daily. This is nobody's fault! Matthew has received fantastic care. We are so thankful for the many doctor's and nurses who are willing to care for him and sacrafice their time and so much of their energy in trying to help him. Let's face it- luck has never been on Matthew's side. He is the sweetest, most wonderful three year old you will EVER meet. Yet, he has had to deal with so much more than any human being I have ever known. He has touched the lives of many, and will continue to teach us lessons about life and how to gracefully deal with really hard things. I love this little man with my whole heart.<br />
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This is not a farewell speech!! Matt and I will continue to fight for Matthew until the Lord decides to call him home. It is not our decision, it is the Lord's. I ask that you continue to pray for our entire family and those involved in Matthew's medical care. We so need the strength that can only come from the faith of others and the power of fasting and prayer.<br />
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So, those are our worries for another day. Today, and the rest of this week, we are a normal family getting excited to enjoy an amazing get away together. I will cherish EVERY moment of the next week.Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com11tag:blogger.com,1999:blog-6579262643091946733.post-24736836449493129932011-10-09T10:12:00.000-07:002011-10-09T10:12:49.719-07:00Here we go again....The past three weeks have been C.R.A.Z.Y!!! Matthew ended up being in the hospital from Tuesday September 26th- through September 30th. We also had four doctor appointments last week and I had to make 5 trips to Primary Children's. Matt and I have decided we need a smart car as a commuter car to and from the hospital :) While in the hospital, Matthew received 6 doses of Solumedrol and an IVIG to help get on top of the rejection we've been fighting for the past two months. His heart rate is still abnormally high for his age group and compared to what his normal was before all of this began. Because of this, and the fact that there are still some concerns on his echo, we are doing a full heart catheterization and another biopsy tomorrow. They will be looking at both sides of the heart and looking at Matthew's coronary arteries to rule out coronary artery disease. A lot of people have asked me what a "cath" or catheterization is. Basically, an interventional cardiologist threads a wire through a blood vessel in his neck or groin to get access to Matthew's heart. They measure all the pressures, and are able to see things during a catheterization that they can't see on echocardiogram. They also take a piece of the heart for pathology to study to determine whether or not Matthew is in rejection. The pathologists are able to grade the rejection to let us know how severe the rejection is and what type of rejection is occurring. <br />
So, big day tomorrow!! I have a little more anxiety going into tomorrow than I have had with past heart catheterizations. Almost three weeks ago during his last cath Matthew's heart stopped. We still are not clear as to the reasons why this occured. I think we were lucky in the fact that they were able to resuscitate Matthew quickly- still scary though!! I hope things go smoothly tomorrow and that we can get some answers about what is going on.<br />
Thank you for your continued prayers and support. This has been a seemingly endless trial. We are grateful for each of you- we could not do this without you!Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com2tag:blogger.com,1999:blog-6579262643091946733.post-12655540732026215852011-09-28T14:05:00.001-07:002011-09-28T15:22:29.664-07:00I have to apologize in advance for the type and grammar errors that will most certainly occur during this post. I am updating the blog as I sit in the hospital on my phone key pad so we'll see how this goes...<br />
Matthew had a heart catheterization and biopsy last Tuesday to make sure Matthew was over his rejection before we stopped the steroids. We've been through biopsies enough to know what to expect. I started getting nervous when an hour had passed and my pager had not gone off yet. The cardiology fellow came out of the cath lab and told us they had had andifficult time getting access in Matthew so they were behind schedule. Another super tense hour and a half went by before the interventional cardiologist came out of the cath lab to tell us that Matthew's heart stopped in the cath lab and they had to give him atropine, epinephrine, and administer chest compressions before they got a pulse back. Thankfully they did!!! He was held overnight in the cardiac ICU for observation and then moved to the floor to be monitored. During this time period, the transplant team noticed a higher than usual heart rate which they worried may be a result of an arrhythmia that could have started after the cardiac arrest episode. Matthew's EKG seemed to come back fine but his echo showed more regurgitation from his mitral and tricuspid valves. The pathology report also came back indicating that there was no rejection at all- Matthew's best biopsy, in fact. So, we were at a loss as to what was happening with Matthew's heart. Matthew's cardiologis felt like even though the pathology report came back clean he was still in rejection. We re-started the oral steroids at a high dose and went home from the hospital promising to return to clinic in a day. At that appointment we were given a holter monitor (it's kind of like a simplified EKG that he wore for 48 hours which recorded his rhythm and heart rate). After the weekend, we went back to clinic and things seemed to be improving a little bit on echo so we started the steroid taper and went home. On Tuesday, my fabulous babysitter Jenna watched Matthew while I volunteered in Luke's class. When I got home Jenna told menus kept slapoint his chest. When I asked him abou it, he told me his heart hurt. I hooked him up to his monitor and checked his heart rate then listened to his heart. I had never heard a heart rate like the one I heard yesterday- it was beating normally really fast, then it was like it transistioned into a really slow heart rate for a few beats and then it went really fast like it was trying to catch up. I called the transplant team and they told me to bring him to PCMC. They did another EKG and another echo and reviewed his heart biopsy with two other pathologists. It was decided tha Matthew was in rejection and that the oral steroids were not treating it. So, here we are in the hospital for the next three days while mathew is being monitored and receiving IV big gun steroids.<br />
I hope we can get him moving in the right direction. We are suppose to take Matthew on his make a wish vacation to Disneyworld to meet Lightning McQueen on October 18th. I sure hope we can go!! He's been looking forward to this experience for a very long time!<br />
My Mom and Dad also left to go to Poland tonserve a mission for the next 18 months. To say the least- I've been an emotional wreck! I have the best, most supportive family on both sides! I truly am blessed! <br />
Please keep Matthew in your prayers. We feel your strength and support always.Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com6tag:blogger.com,1999:blog-6579262643091946733.post-27618524090396451672011-08-26T07:49:00.000-07:002011-08-26T07:53:15.738-07:00Quick update: Matthew had his cardiology appointment yesterday. His echo looked worse than the previous week. We began a more intense treatment for his rejection. He was started on high dose steroids which we will begin to wean in 5 days very slowly. Maybe it's in my head, but I swear he's already getting puffy! I'm not looking forward to his "roid" rage that is so often associated with taking a lot of steroids. My sweet, mild tempered baby turns into a completely different person. He is on all kinds of prophylaxis drugs again. I am hoping and praying that this will work!! We follow up with cardiology next Thursday and they want to do another heart biopsy in a few weeks. <br />
Please keep Matthew in your prayers!! We love you all and appreciate your love and support!<br />
Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com5tag:blogger.com,1999:blog-6579262643091946733.post-68695764521601008882011-08-19T06:35:00.000-07:002011-08-20T10:01:05.843-07:00And the journey continues...<div>Yeah!! Look who's blog is up and running again!! An update is long overdue, and to be honest, blogging is thereputic for me.<br />
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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. <br />
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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!!<br />
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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!!<br />
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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.... <br />
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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! </div>Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com6tag:blogger.com,1999:blog-6579262643091946733.post-9583257126343791762011-05-01T14:48:00.000-07:002011-08-20T10:00:10.707-07:00My 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!<br /><br />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. <br /><br />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! <br /><br />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! <br /><br />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!! Matt and Chrissy Sperryhttp://www.blogger.com/profile/11962801705601662135noreply@blogger.com0