Fighting through the Tempest

I 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.

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.

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.

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.

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.

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.

My Little Star

I 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.

Moving Down

My 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!

All cried out

What 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!

And, we're back

Matthew 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.

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.

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.

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!!

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!!

30 days....and counting

Happy 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.

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.

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:

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.

Home sweet home

Matthew 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!

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.

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.

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.

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.

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.