Sunday, December 5, 2010

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

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

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

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

Wednesday, November 10, 2010

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

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

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

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

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

Wednesday, October 20, 2010

I'm always talking about my friend whose little baby got a heart transplant two weeks prior to Matthew's getting his heart transplant. I thought you might be interested in seeing this link. Landon was the first to receive an incompatible heart transplant at Primary Children's- pretty amazing! This is an incredible family and I love the friendship that has developed between Tammy and I! The transplant cardiologist who was interviewed is also Matthew's cardiologist- Melanie Everitt. She is awesome!! Here is the link: - Lehi infant receives hospital's first incompatible heart transplant

We are doing good. Luke brought home a nasty cold from preschool and then passed it on to Matthew. I think this is Matthew's worst illness being on immune suppressants. We are holding our breath and waiting to see how he does. He's a trooper! We may need to consider preschool at home- at least during the cold/flu/RSV months...

Next on the docket for Matthew: He has a follow up ureteral reflux test on November 2nd, depending on what they find Matthew may have surgery in the near future. He has a heart biospy which will be scheduled the week of November 8th. We are hoping for good heart function and NO rejection. In early December he will have a procedure to change out his "tube" that was just placed to a "button". This will be nice because then his tube won't get caught in his shirt and he won't be at as high of a risk for pulling his tube out which would result in an ER visit to replace the tube. In the meantime, we will carry our "emergency gastrostomy kit" with us wherever we go. Always something with this sweet little man! He keeps us busy!

Thursday, October 7, 2010

I will apologize up front if this post doesn't make much sense. I'm somewhat sleep deprived and my brain is only partially functioning today. We were able to bring Matthew home from the hospital yesterday. Oh, how good it feels to be home! For the first time in about 4 1/2 months Matthew's sweet little face is free of any tubes! He is so beautiful!! We will have to snap some pictures and post them once his face heals from all the tegaderm injuries he's acquired in the past from keeping his NG tube in place.

The surgery for Matthew's gastrostomy tube placement went well. It's a little strange to think that when I open the cap at the tip of his tube to give him meds or food, I am basically dumping it all right into his belly. I'm not sure if I feel like this is an improvement from what we had before, but I guess it was a necessary step. Matthew is actually eating a little bit by mouth since his surgery. If having the Peg tube helps Matthew to eat better, I guess all of this was worth it.

The hospital stay went better than expected. The worse part was when he woke up right after surgery. Of course, Matthew had a difficult time waking up from the anesthesia like always. The hospital only allows one parent into the post operative recovery room so I got to go back with him. I heard him screaming as soon as the doors to the unit opened- all I had to do was follow his voice to find him. The nurse wanted me to console him and hold his oxygen in place while she worked on discharge paperwork so that he could be admitted to the floor as quickly as possible. Let's be honest, if I was a nurse and had a patient like Matthew post anesthesia, I would be doing the same thing. I could see that his IV was loose already, probably from his thrashing prior to my arrival. They secured it with additional tape. About 10 minutes later, and while Matthew was still obviously very unhappy the nurse informed me that it was time for me to hold him in my arms and walk him upstairs to his inpatient room with the nurse's aid who would be escorting me. We almost made it to the exit doors of the unit, probably the busiest part of that area, when I noticed blood all over Matthew, my shirt, Matthew's blanket and on the floor. When I saw the aid staring at me along with about six or more other desk receptionists, and nurses who were all doing nothing but staring at us with their mouths opened I yelled "somebody help me please!!!" I think everybody was in shock- they all started putting gloves on but I don't think anybody really knew what to do. I've been through a lot of hospital experiences with Matthew and not all of them have been pretty, but I've always maintained a calm, nice disposition. However, when I saw the blood pooling all over the floor, literally soaking me and Matthew and I wasn't sure exactly what to do or where the blood was coming from and I could clearly see that nobody around me knew what to do I ordered that my husband come in the room right now. Matt walked through the doors and asked what in the world was going on?? As it turns out, Matthew had pulled out his IV in his struggles and post anesthesia delerium. He also somehow pulled off this cup that was attached to his G tube to catch any blood or other drainage from the surgery. They moved us to a side room, called the GI doctor and quickly got the bleeding stopped. When the GI doctor came into the room he asked me if I was wearing a tye-dye shirt or if that was blood all over me? Yep, it was blood which soaked through all 3 layers of my clothing! Never underestimate the blood thinning agents in Aspirin! Matthew takes Aspirin every day and it definitely does it's job!

After we got to Matthew's room things were smooth sailing. Once Matthew woke up, he tolerated everything much better and things calmed down a lot. We ended up being two hospital rooms down from our friends Faith and Shawn Garff whose little baby who was born with hyposplastic left heart. Cruz had just had his Glenn surgery about 4 days earlier. When Matthew had his transplant, Cruz was born and we were in the hospital back then together also. Baby Cruz seemed to be doing well when we left the hospital yesterday and sure is a sweet little guy! You know your a hospital frequent flier when you know your patient neighbors in the hospital.

Yesterday and last night, Matt was on call at the hospital. I was a little nervous to bring Matthew home, but things went well. He did throw up in the middle of the night. I think he's still recovering and needs to take his feeds more slowly. He was so excited to get home yesterday that he wore himself out trying to keep up with Luke running all over the house. Today he's been really sleepy! Hopefully he will pace himself and have a full recovery soon. Until then, I am dreading the daily dressing changes on his new tube... yikes!

Friday, October 1, 2010

Things have been pretty good and stable since the last biopsy. These past two weeks we've been chasing Matthew's Prograf level, but we are hoping to get that stabilized soon. Matthew goes in for surgery on Tuesday to get his Peg tube (gastric tube) placed. It's suppose to be an overnight stay- I'm dreading it! Who knows what kinds of memories this experience will dig up... poor little Matthew! He's getting a Peg tube because he is still not eating at all. Since his transplant, Matthew gets all of his nutrition through his NG tube. He is finally gaining weight, but we keep praying he will some day gain weight because of what HE is putting in his mouth not because of what we put down his tube. We are hoping that any food aversions, discomforts, or gastric reflux that can occur with an NG tube will go away with a Peg tube and that he will magically start eating like a champ again. We'll see... it's okay to dream right? Please keep him in your prayers!

Now that his heart is looking good, the cardiologists are wanting to focus on Matthew's kidney issues that have always taken a back seat to his heart issues. Matthew has ureteral reflux which has not improved since birth. We will go in for some testing on November 2nd to see if the reflux has improved since our last test about 6 months ago. Reflux usually does not improve in 6 months so mentally we are planning on another surgery for that before the year is over.

Matthew's next biopsy will also be in early November sometime. We are hoping to find normalized pressures and NO rejection!!

It looks like it is going to be a busy Fall! We have enjoyed these past few weeks- the calm before the storm, I guess. Matthew is one tough little guy! Our kids all got the flu shot this week and you would've thought the end of the world came right in the Dr's office-- Matthew just keeps plugging along and takes life as it comes dealing with everything wonderfully. We sure love all of our kids!

Wednesday, September 1, 2010

Matthew had another biopsy yesterday. It's funny how after experiencing so many lows after awhile you don't anticipate good news coming. When it does come, it's wonderful! The interventional cardiologist took 6 pieces of Matthew's heart and all six pieces were clean showing no evidence of rejection!! His heart function was still down and unchanged from the previous biopsy, but the cardiologists are hopeful that Matthew's function will improve over time which could take several months. Yesterday was a long day- because his heart function was still down I think we all suspected more rejection. We all waited on pins and needles for the pathology report to come back and got word around 5:00pm that things looked good. We are so grateful for everybody involved in Matthew's care. Literally, the transplant team, and everybody we've come to know and love at Primary Children's Medical Center is like a second family to us.

The plan for Matthew now is to keep his steriod dose where it is for at least two more weeks. The transplant cardiologist is out of town until then and nobody wants to rock the boat while she is gone. I would imagine they will repeat another biopsy in the future, but today we are enjoying the good news and living in this moment! :)

Thanks to all of you for your continued prayers, love and support. We could not do this without all of you!

Wednesday, August 11, 2010

Our hearts, prayers, and love go out to the Sabin family this week for the lose of their sweet baby girl Annie Sabin. Annie was 4 1/2 months old and was born with tetrology of fallot. For the duration of her life she fought against all odds and various other complications to brighten the lives of those who were lucky enough to know her.

One of the blessings of being a mother of a child who has special needs is that you are able to associate with incredible parents of other children with special needs. This is especially true in the heart world. I have met mothers in the cardiology clinic, in the pharmacy, in the outpatient blood lab, and in the hospital halls. Let's face it, Primary Children's Hospital is a second home to many of us. I was blessed to meet Amy Sabin after Matthew's transplant while Annie and Matthew were in the cardiac ICU together. I went to Annie's viewing on Monday to try to express my love and support to Amy, Cameron, and their family (Annie was the sixth child) but found myself being strengthened by them. What an amazing family with incredible faith and strength. This exprience was another testimony to me that during difficult times the Lord truly is aware of us and can carry us, if we allow him, when things get difficult. I would hope that if I was placed in a similar situation, that I would demonstrate as much faith and trust in the Lord as Amy and Cameron have these past few weeks. Thank you for your good example- truly you are amazing!!

Matthew had an appointment yesterday. We are in a holding pattern until his next biopsy which will probably take place the first week of September. Right now he is doing fabulous except he has an attitude that can only be described accurately by Emily (one of the transplant coordinators) as "roid rage". My sweet, mild tempered baby now hits, screams, and yells "no!!" routinely. I have to smile because I know that this behavior stems from the high dose steriods he is currently on and is not a reflection of his new personality-- hopefully! So far, his rejection has been attributed to the steriod wean schedule he was previously on. For most kids, the schedule works just fine. But, for others like Matthew, they need to be weaned more slowly and some kids actually need to stay on steroids forever. Only time will tell what Matthew can tolerate and if there was damage done to the heart as a result of this rejection episode. We are hopeful that once the rejection is under control, all the pressures will normalize. Until then, we are enjoying each daily victory!

Tuesday, August 3, 2010

Dear Friends and Family,

We know that it has been a while since our last posting but things have been fairly stable. . .that is until today. Matthew had another biopsy and unfortunately the results were not as good as we had hoped. He has mild rejection. We suspected it before we even got the results because his diastolic dysfunction was somewhat off on the echo and his wedge pressure was high on the right heart cath. He isn't going to go back to the hospital because it wasn't bad enough for that but his steroids which had almost been tapered off are now on higher than they ever were before. About 25% of heart recipients will have rejection in the first year. We were certainly hoping that we would be one of those families without any rejection because the mortality rate goes way up now and the longevity of the heart goes down. They have tried to tell us not be too concerned and that they see this all the time . . . I wonder if they have ever been parents.

Needless to say, we are frustrated. It looks like more house arrest is what we are in for. The frustrating thing is that we have done everything that they have asked of us to the T. We haven't missed any doses of any of his drugs, haven't taken him out, and have kept masks on (in our house) until about 10 days ago. Oh how I wish we understood more about immune system.

Matthew doesn't know any different. They call it silent rejection or early rejection because it really hasn't affected him much or his ability to function. Our next biopsy will be in two weeks and we hope that things will look better then. Please keep him in your prayers and we will try to keep you posted.

Friday, July 16, 2010

In three days we hit our "2 month" mark since transplant! Where has the time gone? I'm sorry I haven't been as diligent at keeping up the blog. You would think that I would have things under control by now and things would be slower-- not true!! In fact, it seems like life is crazier now than ever.

Matthew was scheduled to have a biopsy today. However, yesterday afternoon it was cancelled due to the start of Matthew's cold. I have no idea how I am going to keep Matthew healthy when his little brother is Luke! Luke is a germ magnet. He seems to pick up anything and everything he's been exposed to. The fact that he picks his nose, licks his hands, sucks on his shirt, etc etc. probably doesn't help his ability to stay healthy either. He is also my rebel. He puts on a mask when asked but as soon as I turn my back he "loses it" or "it falls off." Joshua is the opposite. He is the most diligent hand sanitizer and mask wearer in the family. One morning he reminded Luke that he needed to put on a mask and Luke exclaimed "I like germs! and I like to get sick!" If anybody has any ideas on how in the world I should deal with this obstacle I would welcome any ideas! In the meantime, we are holding our breath praying that Matthew can stay healthy enough to avoid another hospitalization. I think the 14 different anti-virals and antibiotics he is taking as a prophylaxis are definitely helping provide some defense so far.

Matthew still continues to struggle with eating. We have literally tried everything in the book to get him to eat and none of it works. I think for Matthew it's a control issue. He may not be able to control a lot of things in his life, but he can control what he puts in his mouth. Besides, he is taking a lot of nasty medicines and has developed a bad aversion to any food. He currently has an NG tube which we give him nutrition through at each meal and then continuously at night. Sometimes the NG tube's cap comes off and it acts as a suction emptying the contents of his stomach onto my floor. It's pretty gross. I just don't think NG tubes and active toddlers where meant to go together..... EVER! The transplant team is pushing towards having a GI doctor place a "G" tube in the near future. They think his eating issues will be long term and they favor a "G" tube over an NG tube for longer term use. Placing the tube will be an overnight procedure which should happen soon.

Other than that, Matthew is doing great!!! Seeing Matthew happy and playing makes every second of all of this worth it! Thanks so much to everybody for all your love and continued support. We are grateful for each and every one of you!

Monday, June 21, 2010

I hope everybody had a great Father's day weekend! I am so grateful to my own father for all the sacrifices he made for our family growing up. His kids are his life. He truly invested ALL of his free time into raising all 8 of us. I don't remember my Dad having any outside hobbies, interests,or friends because I think that more than anything he genuinely loved being with his family. He took every opportunity he could find to teach us and create memories with us. Thanks Dad!! I love you!! Furthermore, I am extremely blessed and grateful to have the very best husband and Father for my own children that there is in this world! All of my children adore their father and have great relationships with him. Matt is so busy that beyond work, like my Dad, the only free time he has is spent with the boys. Josh, Luke, and Matthew live for every moment spent with their Dad. Thanks for all you do for us Matt- we love you more than words could ever express!

Our family had a great weekend. We had a family campout in the backyard and enjoyed being together, making smores over the firepit, playing games and attempting to sleep in the backyard in the tent (we almost made it but Luke was too scared of the crickets so we came inside early to try to get some sleep). Matthew must have said "I so happy!" about 20 times (literally) that night. The rest of the weekend was just as fun- Matt had the weekend off!! That alone, was the best Father's day gift anybody could have given him :)

Matthew continues to recover. He regressed a little since our last post. For a little over a week cardiology has been watching his white cell counts which continue to drop (his ANC is .4 for those who care to know). He is on a medicine called Valcyte because his donor's heart tested positive for a CMV virus. Typically this virus is not very threatning, in fact many of us could be carriers with no symptoms at all. However, when you are immune compromised and then exposed it can turn into a big deal. They are thinking the Valcyte is causing his levels to drop to as low as they are but they really can't do anything about it for 6 months until his treatment for CMV is complete. Until then, we are getting creative with some of his meds and hoping that we don't have to adjust his Cellcept (one of his immune suppressant drugs). He may need to start some injections of some sort to try to stimulate bone marrow production again. We'll see-- it's an appointment by appointment process. Until then, we are being even more careful about spreading germs (if that is even possible). I feel like I'm going through laundry, face masks, Lysol, and paper towels like crazy.

We also met with a dietician who told us that although Matthew is eating a lot better, he is still only intaking 1/2 the calories he needs. So, in went another NG tube. I was really upset about having to put in another NG tube, but then he started rebelling against taking his meds by mouth and I figured it's good to have an alternative route in case he's not cooperative. He also started throwing up and for the past three days (as part of his bedtime routine I'm guessing) he likes to throw up his NG tube so we have to replace it nightly. I know recovery takes a long time, this weekend brought me back to reality! He's such a sweet, happy little guy. We sure do love all our kids lots!!

Tuesday, June 15, 2010

Matthew had an appointment yesterday with Cardiology and they gave us the go ahead to take out the NG tube. Now, for the first time in a month, Matthew is completely free of any wires or tubes!!! He is doing awesome. The doctor also said that his first two heart caths and biopsy's looked perfect so we get to wait for another month to repeat his next one. For the time being, we only have two appointments weekly where they will check his blood, do an echo, and go over his ever changing and adjusting list of medications. Matthew is even getting used to the doctor's office routine. The other day when we were at an appointment, the cardiologist said "now I better take a listen to Matthew." Matthew jumped off my lap, walked over to the doctor and lifted up his shirt. Then he turned around so she could listen to his back. After she was done Matthew excitedely ran over to me and exclaimed "I did it!!!"

Today was the first weekday I have had Josh and Luke back at home without doctor's appointments and it was wonderful!! We felt somewhat normal and are getting into a summer routine. Joshua and Luke are best friends. I love to see their relationship develop, especially through the difficult times. They also LOVE playing with Matthew. Matthew follows them around all day long. Joshua told me that Matthew is like a toy that got a new battery. The toy is the same, but because of the battery the toy has much more energy. I always love how Joshua explains things so perfectly....

Friday, June 11, 2010

The boys are back in town! After being away for almost two weeks, Joshua and Luke rejoined us. I wish that I could have captured Matthew Jr's face on camera when I pulled up. They spent the evening building blocks, playing with cars, and pushing each other around on "McQueen". It is so nice to have them back. Thank you Liz and Kurt for taking such good care of them.

Matthew Jr. had another heart cath today. It was only the 4th doctor's visit this week. If he ever gets sick its gonna be bad because it will come from some doctor's office. We are getting better with the sedation issue and thankfully he came out of it okay. He took a good nap this afternoon and this evening he was back to himself. We also got a telephone call and they again informed us that there was no evidence of rejection.

I hate the idea of rejection. You are never safe. It is always there . . .lurking. I am sure that it will cross our path someday but for the time being I am just happy that he is doing well.

Wednesday, June 9, 2010

Today is Matthew's three week mark from his initial transplalnt surgery. When I think of what has happened during that time, my head starts to spin. It feels like it's been three months, not three weeks.

Matthew is still recovering, but he is doing awesome! He is doing things he's never done before. The other day, he was playing in the living room and just took off in a sprint. Me and Matt looked at each other with amazement and wondered if what we had just seen had really happened. Matthew has much more energy then he has ever had and he is sleeping less (he was sleeping 18 hours a day prior to surgery). The other day he wanted his blankie from upstairs in his room so I went up to get it. By the time I got the blanket and turned around to bring it to him- Matthew had made it halfway up the stairs and WASN'T lying down taking a breather in the middle of the stairwell like he used to. Yesterday Matthew had an appointment with his pediatrician and she was amazed out how well he looked. She told me that the last time she saw him, prior to surgery, he looked like a tired old man. Since transplant he looks like a totally different child she said.

Josh and Luke finally come home Friday and I CANNOT wait!!! I am hardly ever away from my kids, so this has been a difficult challenge for me, and them. Matthew told me he was mad at Josh and Luke yesterday because they aren't home. I think Matthew will finally be able to keep up with his older brothers and all three of them will have a blast together. Thanks again Liz and Kurt for showing them such a great time in Arizona and thank you Jen and Ryan for bringing them back to us!

We will let you know how the biopsy goes on Friday. Until then, please pray for good news from the biopsy and a smooth recovery after sedation. Thank you to everybody for your continued support!

Monday, June 7, 2010

I just got back from Matthew's appointments at Primary Children's. I am happy to say that the fluid around Matthew's heart (pericardial effusion) is now completely gone. He will get a biopsy again on Friday. Everybody pray that he comes out of sedation well-- I don't think I can handle another overnighter at PCMC! We will let you know what the results show, which will probably be early next week.

Matthew is doing awesome! Lately he is talking up a storm. Me and Matt can't tell if Matthew has become a jabberbox because he has 2 on one attention lately or if it's because his brothers are gone and he finally has the chance to speak for himself. Whatever the reason, we are happy to hear it. :)

Saturday, June 5, 2010

No news is good news- right?? Things have been crazy lately. Matt is back at work full force, and Matthew keeps me busy. I am getting more used to Matthew's new schedule and I'm happy to say that I am much more efficient at drawing his meds. He is tolerating everything really well. I am enjoying each minute with him as he continues to get stronger each day and loves to have one on one play time with Mom.

We had a doctor's appointment on Friday and found out that the pericardial effusion they've been keeping tabs on through echo is now shrinking and his labs looked perfect. We have another appointment scheduled for Monday, Tuesday, and another biopsy scheduled for Friday. In the meantime they have given us some new rules: Matthew cannot go anywhere public (including church, movies, restraunts, grocery stores, and even extended family gatherings), our other children should not have friends over to play, when our children get home from friends they need to strip down and scrub in to enter the house- etc. So basically what we have been doing is walking around our house with masks on. We have been going for drives in the car to get out (by the way, I get some pretty bizarre looks when seen driving with a mask on in the car) and I take Matthew to some unpopulated location to go for walks outside with him. I know, it's crazy! They are telling us that for these next 4-6 months Matthew needs to be in isolation. A few adult visitors at a time are okay to have over, but other than that.... nothing until they start weaning his anti-rejection meds. As it is right now, he basically has no immune system. He is on 3 different immune suppressants and then on antibiotics and other meds to protect him from any virus, fungus, etc he may be susceptible to. That's okay-- Matthew is worth it!! I sure hope Luke and Josh agree when they get home!

Overall, we feel VERY blessed! The past 3 weeks still feel like a blur. Last night when going to sleep I went to get my cell phone to put on my nightstand in case we got the "transplant" call in the middle of the night (mostly out of habit). Then I realized we already got the call and that Matthew was already home and recovering beautifully. Things are good...

Thursday, June 3, 2010

We made it through our first day at home! Yesterday we FINALLY got discharged at about 7:30 and it is really nice to be home. Today I feel like my whole day consisted of filling syringes with various medications, putting them down Matthew's NG tube, and then cleaning the syringes. He's on 13 medications and gets meds 5 times a day-- so literally, that's what I did today.

Tommorrow is our first appointment at PCMC and they say that everything we need to do will take 3-4 hours. We just can't seem to really get away from the hospital I tell you. We are hoping things are still smooth sailing. I'm sure they will be. We recognize how very blessed we have been. Matthew is such a miracle and we love him so much. Now we just need the brothers home. Matthew started to cry when he talked to them on the phone today. He said he wants Josh and "Gook". It broke my heart! It will be a happy day when we are all home together!!

Wednesday, June 2, 2010

I can't believe it!! Matthew is free of all tubes and lines at the moment. He is beautiful!! We just got word that the biopsy looked "perfect" and that his echo looked great. The fluid level they saw around the heart has not increased and it looks "fibrous" which means it's old and most likely from surgery. We should be sleeping in our own beds tonight!! They are planning on discharging us this afternoon sometime. The next few days might be crazy, but I am really looking forward to having Matthew at home again.
It's been more than 24 hours since Matthew's biopsy and we are still waiting for the official report. Preliminary results show no signs of rejection, which is good. However, I've been through this too many times to trust anything but the final report coming from the doctor herself. Matthew also had an echo this morning. If everything looks good, we will be discharged today. Everybody has been "training" me for the past two days on how to take care of this sweet little guy. The pharmacist came and spoke with me and Matt yesterday for 45 minutes about the 13 medications Matthew will be on when he comes home. It all seems so technical--who knew that grapefruit would interfer with his anti-rejection medication absorption??? Lots to learn and remember, but we'll get it down. I also have to demonstrate how to place an NG tube on Matthew before they will let us go. I'm really dreading that experience.

So, we wait..... We'll let you know when we know what the plan is. Until then, Matthew continues to get a super round, puffy face as one of the side effects of the steroids he is now on. He is so cute. When he's eating I can't tell if he has food in his checks or if it's just his new round face. Usually it's not the food :) We made it through yesterday and the post-sedation wrestling match. Overall, it really wasn't as bad as past experiences. I think we've figured out a good anesthesia cocktail for Matthew. It's a good thing because they are telling us he'll need a biopsy every other week for the next few months.

Thanks again Liz and Kurt for showing Josh and Luke a good time in Arizona. They went to their first drive in movie and they LOVED it! You guys are the best!

Tuesday, June 1, 2010

Dear Family and Friends,

In our continuing efforts to find a tolerable anesthetic agent for Matthew I feel a lot like the BP CEO this morning. We thought that we had found the perfect agent: Propofol, Laughing Gas, and Fentanyl (wiff) but as we speak Chrissy is currently involved in wrestling with a child who is caught up in some post anesthesia delirium. I can't wait for the next 24 hours to be over. What a bear! The moments of lucidity are almost comical. He just exclaimed, "I'm stuck." (He is because of all of his alligator rolls in bed).

Matthew just got out of his heart cath. It went well. His wedge pressures and PAP pressures looked good. They took several biopsies and we are anxiously awaiting to see if there is any rejection. This is likely the first of many biopsies so we are hopeful that we can find something that works for Matthew. I wish he had come with an on and off switch.

If things look good, I would assume that they would be sending us home soon. We will keep you posted. . . looks like I need to go and tap Chrissy out of the ring.

Monday, May 31, 2010

Matthew has had a busy morning filled with labs, an echo, a chest xray, doctors rounding, occupational therapists etc. etc. I think all the medical personnel is trying to get out of here early for the Memorial Day holiday. I can't blame them! Matt's at work today and I hope he gets done early too.

Joshua and Luke left today to visit their Aunt Liz and Uncle Kurt and their cousins in Arizona. I miss them so much already. My Dad flew with them early this morning and is turning around and flying back to Utah hoping to make it in time for the family picnic. Thanks Dad! Volunteering to fly alone with two children is a big sacrafice that we really appreciate. I miss being with all of my children at the same time! I can't wait for the day that our family can all be together at home again!

Matthew is going in for his heart catheterization tommorrow at 7 am where they will take a biopsy of his heart to test it for rejection. If everything goes well they should be able to send Matthew home on Wednesday. However, his echo today showed that he still has some fluid around his heart which the Cardiologists continue to monitor. Extra fluid can be a sign of rejection and as one of the cardiologists told me today "rejection is like a shark that is always looming in a dark corner somewhere." That statement was really reassuring. Matthew has also had a hard time getting his Prograf (anti-rejection medicine) level up to where they want it. I'm sure these issues will need to be sorted out before discharge. As we well know, discharge could be days or weeks away and we won't know for sure until the day before or morning of.

I'm a little nervous to bring Matthew home. Yesterday Matt and I counted at least 10 drugs Matthew is on. Prior to surgery Matthew was on 4 and just keeping up on prescription refills was a job. 10 drugs needing to be available and administered on a strict schedule, 3 kids, managing doctor appointments, and running a house during the summer seems a little overwhelming to me. I'm sure we'll get a system down that will work out just fine. Thanks Liz, Kurt, and Jen Johnson for helping with the boys so that we will have some time to get things organized before Luke and Josh come home.

Yesterday was my first sacrament meeting back in our ward. The love I felt there from so many of you was so comforting. Sister Olsen gave me a carload (literally) of gifts and goodies from all of you and we are so grateful for the outpouring of love and support. Thanks to our family, our ward family, friends, co-workers, neighbors and to everybody who has helped us in so many ways. We love and appreciate you all!

Sunday, May 30, 2010

As a child my parents would drag us around on Memorial Weekend Sunday to visit the grave sites of our great grandparents. As I grew into adolescence I remember always balking at the idea of spending an afternoon visiting the sites of dead people that I never knew. It wasn't until one particular afternoon when we were driving by the Murray Cemetery and I commented that if I knew someone who was buried I wouldn't mind visiting them. The next day we received a call from my brother-in-law informing us that my sister Anne had died in a car accident. Memorial day weekend has taken on a new meaning since that time.

This weekend I can't help but imagine how the family of Matthew's donated heart must feel. We feel like we have a pretty good idea of who they are and the circumstances of his death. Salt Lake is a relatively small place and word gets around. Our hearts go out to them. Our blessing is their tragedy. It would take a lot of faith and hope as a mother to give away a young child's organs. There are not words to describe our gratitude. There is not enough thank yous to express the appreciation we have for them. My prayers are with you this day. If it is any consolation: Your son's heart is amazing. Of all the complications we have had here in the hospital, not once has it been because of the heart in Matthew's chest. Our hope and prayer is that it can last a lifetime. It was the most precious gift you could give our family. Thank you.

Matthew is doing really well. Last night it was like someone had dropped a few too many quarters into his slot. He was laughing and carrying on like a clown. He even had a full on conversation with Chrissy over the phone at 10:30 pm. Thankfully at 11 he passed out. I passed out next to him. He slept better than any other night here in the hospital yet. He didn't wake up until about 8:00 am. He called out crying several times for Mommy but every time I got up he was still asleep. I wonder what kind of dreams go through his head when he rests.

This morning's highlight was the ride in the "car" around the hospital. He allowed us to put a mask on him and away we went. We saw the full size Spider man, blew bubbles outside on the outdoor patio, and played the piano in the 3rd floor lobby. In hindsight it was probably a mistake because containment will now be that much harder. For the moment he bought the excuse that other children needed a turn.

He ordered "Daddy Juice" (coke products) for lunch with chicken nuggets and 2 slushies. He was in heaven. He again passed out and is taking a nap.

I just want to thank everyone again. The pure unselfish service provided us has been overwhelming. My thoughts are with all of you as you are remembering loved ones this weekend. Robert and Gail, Randy and your family, Mareid and your family, Grandpa/ma Black & Sperry, Hedgepeths, Brent and family, Larry Jr. . . and many others. We look forward to the reunion on the other side and pray to live worthy of the blessings I know that we will one day all want.

Saturday, May 29, 2010

My wish came true last night when I heard Matthew call out for Deeda. What a simple gesture with an enormous impact. It was so good to see him again. I left the hospital on Wednesday afternoon to attend Joshua's last baseball game and because I was planning on working on Thursday. To come back to a giggling, talking little boy was wonderful. Despite his grumpiness and reflexive reactions it was certainly an upper to my day.

Overall, Chrissy tells me that he was pretty grumpy yesterday. They warned us about days like these. They seem to have one good day: wear themselves out - then the next day is like living with Frankenstein. Last night we brought all of the boys up to visit Jr. and to have a sleep-over in the trailer. Needless to say, at about 8:00pm Matthew got a finger in his nose and pulled out his NJ tube. Now it is a very expensively placed NG tube. His reponse: Sorry Mommy. He is so sweet when he is himself. Can you blame the guy for trying to pick his nose?

The night was again frustrating. The over-achieving tech was either trying to check out my hot wife or doesn't understand the value of a rested child. Either way, they really need to learn the power of a drug called "sleep". It was an in and out kind of night and the morning always comes too early.

The changes are starting to be seen on Matthew. His face is more full and his cheeks are puffing out. It is probably too early for this to be the prednisone but who knows. Maybe it is just nutrition for a change. He is definitely getting stronger and healing from all of his surgeries.

I want to personally thank all of my partners and all of the people that i work with at Utah Valley Regional Med Center. The response that I received in going back to work was overwhellming. Thank you for supporting me and helping my family to make it through this ordeal. I was on the brink of tears most of the shift. You have all been amazing and I am thankful for that. I cannot believe how many people had read this blog and were genuinely concerned for our family. I love my work and your hearts have made UVRMC and even better place to live and work. Thank you.

Friday, May 28, 2010

Matthew had a rougher night last night. I don't know why, but he seemed a lot more restless than the night before. He is also more irritable and anxious this morning. I guess post surgically there are lots of ups and downs. Today must be one of his downs. I was just looking forward to another day of laughing together while playing peek-a-boo and trains.... Hopefully later today he'll be more playful when his brothers and Dad get here.

The highlight of the morning for me was when I started naming all kinds of choices for breakfast Matthew said yes to pancakes! He actually ate a few bites and kept the pancakes down. At least he is motivated to eat again- I think his appetite will continue to improve and we will make baby steps every day.

The transplant team is trying to make some changes with his anesthesia and painkillers while planning for his cardiac catheterization where they will take a heart biopsy on Tuesday. I don't think anybody wants a repeat of what happened last time when he was waking up from anesthesia. One of Matthew's nurses from the CICU called me this morning and said "this is Matthew's WWF nurse" because we literally spent 2 days together trying to keep him still so he wouldn't rip out lines. We will keep hoping and praying for better results next week.

In the meantime, we are overwhelmed with gratitude for the many blessings and miracles that have taken place in our lives. We know Heavenly Father loves us and baby Matthew- there are evidences of that taking place daily.

Thursday, May 27, 2010

Matthew had a great day today! He belly laughed for the first time this early evening and it made me smile from the inside out! Tommorrow is Josh's last day of school so the whole family will be together for the day. I can't wait!!! Matthew absolutely lights up when he sees his brothers.

Today the cardiologist told me that on Matthew's latest echo it showed some fluid behind his heart. They are going to continue to watch it and she was hopeful they would not have to go in his chest to drain it. I don't think I can bear to let them do open heart surgery three times in one hospital stay- everybody pray for this issue to resolve without intervention. By the way, Matthew's cardiologist is Melanie Everitt who apparantly was highlighted on the news in Utah recently for being involved with a transplanted heart that was not compatible with it's recipient's blood. No- this was not Matthew. Matthew's heart is compatible with his own blood. A couple of employees at PCMC who know Matthew had a heart transplant told me they saw me on the news the other night so I thought I would clarify.

I hope everybody has a great Memorial Day weekend. We appreciate everybody's ongoing love, prayer and support. We love you all and wish to thank you for everything you've done to strengthen our family this past week.
It's Thursday morning and things are improving here in the hospital. The hospital staff switched some meds around and have blocked off intervals of time when Matthew can nap and sleep at night. Matthew's nurses are like bouncers sitting by his door blocking many who try to enter while he is peacefully resting. Matthew's ability to sleep has really made a huge difference in his behavior...surprise, surprise!

Matthew started communicating by using simple "yes" or "no" answers to questions he is asked. I think he is starting to feel more secure with his environment now that he is not being tortured every day. We are still having issues with keeping food down. He has an NJ tube so he is getting his oral meds and some nutrition that way. Every time we try to feed him orally, he throws up. Our goal for today is to give him pleasant things to taste to help him overcome his aversion to food. Now that many of his tubes and lines are out, I put him in his Mcqueen pj's and he was super happy.

It feels wonderful to be able to care for him like a real Mom again. I enjoy each moment I have with him! I love each day because I feel like every morning he continues to become more and more like the sweet little Matthew we know.

What we are hearing at this point is that he will have a heart biopsy on Tuesday and if all goes well he could be home as early as Wednesday. We'll see.... there are lots of ups and downs in the hospital and you never know what will happen (and when..)

Wednesday, May 26, 2010

It is early Wednesday morning and we have officially been in the hospital for one week now. Although we have been at the hospital continously we haven't actually stayed the entire night with Matthew because he had one on one nursing while in the CICU (cardiac intensive care unit). We were told that he was doing well and sleeping while we caught a few hours of z's. I now have my doubts and I have an incredible insight into why he is behaving the way that he is: PURE EXHAUSTION!

He is now on the third floor and because the nursing ratio is like 1:4 we are staying with him 24/7. There is a bed in the room and if he goes to sleep, there is no reason why we can't go to sleep. WRONG! Nana left at around 9:00 pm. We both actually got some sleep from 9 to 11 (2hrs worth). Then they came in to do vitals and give him his meds. He threw up. We changed the sheets, the blankets, washed his hair, and put on new pajamas. That took an hour. At midnight the foley had to come out and that whole ordeal took another hour. It was now 2 am. They then started his 3sequential medications that have to be run via IV. Each one ran over an hour. The machines beep like a crazy alarm when they are being loaded, 5 minutes before they end, and then when they end. Then they have to flush the medications with some saline and the whole beeping process goes on again. Finally at 5 am Matthew and I fell asleep. At 6 (before I was completely awake) I see the floor tech taking off all of Matthew's EKG leads so that he can go down for a CXR. Matthew was awake again and crying because, well let me see: HE WAS TIRED. I refused the cxr and told them it could easily be done during the day when he was awake. As soon as I refused the Xray the resident comes in to examine him and his biggest question: How is Matthew's mental status today? Well let me tell you ....HE IS EXHAUSTED! I ask him to please arrange the schedule so that he can atleast have 6 hours of uninterrupted time. He tells me he will work on it and that Matt should be able to sleep until 8:30 when his morning meds are due (ie. we start it all over again). No sooner does he leave when the nurse walks in and tells me he has morning labs at 7:30.

What an eye opener of a night! If this is how his last week in the hospital has been I can sum it up really easy: Sleep deprivation, starvation, disorientation (drugs), and pain. Sounds more like a week at Guantanamo. Its amazing he is alive. Its amazing he is healing.

Final thoughts: Obviously their do not disturb sign needs larger font. Oh, and lets just hope that he pees today. Another 3 hour urology-Foley fight just doesn't sound very appealing today.

Tuesday, May 25, 2010

Good news everyone, Matthew began speaking again today. Leave it to good old Lightning McQueen. We had his Mack truck out and Chrissy asked if it was mack and Matthew said: Yeah (in only the voice that he has). He then started watching the movie and suddenly remembered the names of all of the characters. He still hasn't said Deedaa but he has said "Mommy" (Grandpa heard it). We are thrilled that his mind has made it back to earth.

We also made some more progress in that they transferred him out of the CICU. He is now on a post surgical floor (room 3085). He was scared during transport and called for Mommy. That made Chrissy happy. His room is much more spacious. Has a giant window overlooking the salt lake valley and a private bathroom, shower, and bed.

Our prayer is that he will continue to improve.
Good morning. It is Tuesday May 25th and we are almost 1 week into this ordeal. One week ago Matthew was walking around talking about Daddies Big Big Red Truck and wearing oxygen around the house. Thoughts of receiving a heart were still very very distant in our minds.

Matthew is doing a little bit better this am. It seems like he is more alert and more aware of what is happening. He is still not talking but the muscles around his mouth are twitching and he is trying to smile. He just seems a little more content and the look in his eye doesn't seem as lost. He certainly recognizes Chrissy and me. He also slept pretty well again last night. He is still paying the sleep debt he owes from late last week.

He has come off of oxygen completely and his sats on room air are 98! Can you believe that? He hasn't had this good of oxygenation since he was born. Who knows maybe he has oxygen toxicity. The only lines he has now are his NG tube (nasal-gastric) to feed him and 2 Iv's and his Foley.

They are going to transfer us out of the ICU. They told us that they don't want him to get ICU psychosis . . .isn't it a little late for that? We are hopefull that they will give us the presidential suite on top of the hospital with 360 degree views of the mountains and valleys. We also need to get on top of some physical therapy. How is Matthew going to be the next Sean White (he had tetrology of fallot) if he can't walk?

If you have any questions that you would like us to address, please leave a comment on the blog and we will try to address them. Thank you again for supporting us.

Monday, May 24, 2010

Matthew is about the same this early evening with a few improvements. He is moving his limbs more and tracking with his eyes more. He is still not talking at all or responding with smiles. The medical team continues to watch him throughout the next 24 hours and then they will decide if they want to do an MRI tommorrow to further rule out stroke. At this point we are all still hoping that this dissassociation is an effect of all the medications his been on. It's really emotional watching him react this way. I miss the sweet personality of our little Matthew. I am prayerful that he will return to us. After an encouraging day, I think he will!
It is Monday morning and another week is ahead of us. It has been raining all night and this morning we woke up to snow! It is may 24th for crying out loud. All of our beautiful petunias are going to be dead! (Isn't it weird to think about the things we worry and think about?)

Matthew is about the same today. The lights are on but it doesn't seem like anyone is home. He is actually a little bit better. He is moving more and when they pulled his one remaining mediastinal tube out he actually flinched and tried to cry. Can you imagine what it must be like to be in enough pain to cry but not be able to? There were tears in his eyes. His epicardial pacemaker leads were also removed as was his arterial line. The only lines remaining are his Foley (if he could pee on his own that would come out too), a PICC (peripherally inserted central line), a small peripheral IV, and his NG tube. It is so nice to be able to pick him up and hold him. He is in Chrissy's arms as we speak and has fallen asleep again.

Our working diagnosis for the mental status change at this point is medications. For those of you in the medical field it is like his speech is locked in but everything else is okay. He got his last dose of thymocyte yesterday . . . it is a drug isolated from rabbits and as far as I am concerned reminds me of the Wii game my son Joshua plays: Rabid Rabbits. I hope that it is as simple as a medication that just needs to wear off. What a terrible thing to have a new heart but no brain. I just want him to be better.

We also heard some more good news this morning regarding the trailer spot that we are in. Originally they said that we could only have it for 3 nights. Amazingly and miraculously Bishop Flannery met someone as they were pulling out who said that they were leaving about two weeks early. Our first text message this morning was from the Bishop and we now have a place to stay until the 31rst. Thank you Bishop. You have gone above and beyond and another tender mercy has been provided.

The whole experience has been an amazing sequence of miracles and blessings intermixed with challenges and stress. My prayer today is to hear Matthew call out for Deedaa one more time. Only time will tell. We love and appreciate all of you. Thanks for your support.

Sunday, May 23, 2010

We just wanted to give a closing thought for the day. Overall today was a good day. We are making progress. No 4 hour crying spells and no lost Foley catheters. Matthew has been peaceful today. He is somewhat dissociated. By that I mean his eyes are bright and shining but we couldn't really get him to talk to us or interact with us. When they pulled his chest tubes out he barely even flinched. They were so worried that they took him down for a CT scan of his head tonight to make sure that he didn't have a stroke. They didn't see a stroke but they did see a small subdural hemorrhage. They have now stopped his heparin and we will see what they do with the anti coagulation tomorrow am.

Seeing his brothers was an added bonus today. Finally, when we left his room this evening he was asleep and that is something that he hasn't really done in about 40 hours. Here is to sleeping through the night and calling for MeeMaa in the morning!

Thank you to the surprise visit of Susan Morgan (and the support of her family that sent her here). We have the best family in the whole world. Thanks again to our Ward for fasting for Matthew. Without parents and siblings we would be hurting a lot more.
We just wanted to thank all of you for your words of kindness, your prayers, and your support. A big thank you to our fabulous ward for the ward fast! Matthew has had a great day (I'm keeping my fingers crossed). He is fairly mellow and seems to be comfortable. We are working out a few minor issues (like not eating and throwing up what is fed through his NG tube) but after the past several days today is much better. We have been rejuvenated this Sabbath day as Matt and I were able to attend a small sacrament service at the hospital- I got tears in my eyes because I realized our own ward was fasting for our family at that moment and I was filled with gratitude. Also, Joshua and Luke have been able to visit Matt and me at the hospital thanks to the Bishop's kindness in lending us his trailer. The kids think the trailer is the greatest thing ever. Joshua and Luke were able to visit Matthew today for the first time which made them so happy. Matthew was really happy too! Though mellow, you could see the joy in his bright, blue eyes. Today is a much more encouraging day. As we know, there are lots of ups and downs here in the cardiac ICU, but we are enjoying this up! Thanks again to everybody for buoying us up this day!!!
Well Matthew is still in the zone today. His eyes are fixated on the TV and he hasn't slept in 36 hours. At this point I think he is in frank steroid/medication induced psychosis. Poor little buddy. On the happier note, his two chest tubes came out and that hated right atrial line (who puts a line directly through the wall of a new heart?) I have never seen that before and it came out also. He still has a mediastinal drain in but that should come out later today. We can then pick him up. Not sure that will help anything though. Finally, they said that as soon as his mediastinal drain comes out that he will be transferred out of the ICU. I am sure that they can't wait.

I asked the Dr. about the mental status and he said that he would likely be this way until he gets home to his own bed, his own home, and his own food. Lets pray for a 2 week stay and not a 4 month stay like the last one.
After a wonderful day yesterday, last night was a polar opposite. At shift change (7-8 pm)they kick you out of the room both for your sakes and for theirs. The told us that they gave Matthew a bath and that he was doing very well . . . we walked in anticipating another great night but it ended up as one of the hardest moments I have ever had to bare in my life. I don't know if it was pain, medication, ICU delirium, frank psychosis or what but Matthew was miserable. He cried and wiggled in agony for 4 hours. Non stop. Inconsolable. He kept saying: meemaaa, deedaa, I'm scared and Owe, oweee, oweee. It was the single worst thing that I have ever seen in my life. It took two hours for them (although it felt like an eternity) to get a senior urologist up there to place a foley catheter (The jr. on call didn't know what she was doing). The staff didn't know what to do. I finally lost it and didn't know what to do. I have never seen anything like it in the 10 years that I have been doing medicine. It gave new meaning to thought of God watching his son suffer in Gethsemane. It was unbelievable. I was holding him, Chrissy was holding him, Nurses were holding him down and it wasn't working. Tears were falling out of my eyes as he kept yelling for me and chrissy and we consistently kept telling him that we were there. It was like he was trapped in another dimension.

It got so bad that I had to call for backup. Thank goodness for Parents, Older brothers, and Sister-in-laws. I could not have made it through last night without them there. I cannot imagine Hell being anything worse than last night.

He remained inconsolable and the nursing staff asked us all to leave about midnight. Somehow, she was able to focus his attention on some crazy midnight cartoon on the Disney channel. The rest I don't even really want to know because I was either leaving the hospital of going to be in the trailer. Physically and emotionally I was spent. Between the steroids, anti-rejection meds, pain meds, lack of sleep and food. Matthew Jr. must be out of his mind . . . literally. I haven't been in his room yet today and I am a little bit scared. I hope he has ended his "bad trip" and found his way back to earth.

I just want to thank everyone for following the blog. It sure saves us from answering the same questions over and over again. It is a roller coaster adventure that changes direction without any warning. We know that Matthew is in the Lord's hands and that this will only be a moment in his eternal existence. It is still hard.

Saturday, May 22, 2010

So far things are a little better today. Extubation went much better than the first time. Our nurse is awesome: experienced, on top of things, and willing to go to bat for the "Booja". He drank his first bottle in almost four days. He is still in a lot of pain but he is starting to talk more. It is the saddest thing in the world as a parent to hear you child yell over and over: owe, owe, owe, mommy, owe, owe, owe. If only there was an easy way to curb all pain and make patients happy when they are miserable. Oh, he just pulled out his foley (luckily it didn't have a balloon on the end of it.) Gotta go.
He told us that the operation had been a success and that our timing in having the transplant completed was perfect. Matthew's heart was about three times bigger then it should have been and very ischemic. He said that Matthew was a step away from falling off the cliff. We were also lucky in the fact that the transplanted heart fit just perfectly inside Matthew's chest. They didn't need to leave his chest open or anything and were able to close his skin without problem. The surgeon also showed us Matthew's original heart. Somewhat morbid and sad. It has kept him alive for two years and I am so thankful for that.

Thirty minutes after he left us we were able to go and see Matthew. Seeing your child lifeless and hooked up to a breathing machine is something I hope most of you never have to witness. In expecting the worst, he actually looked better than the last time he came out of surgery. He was alive. His new heart was beating, and he wasn't on so much support that I was in fear that the heart they gave him was a bad one. The tubes were of course coming out of everywhere: 2 tube around his lungs, 1 tube around his heart, 1 IV going directly into his new heart's right atrium, 3 peripheral IV's, 1 central line, a breathing tube in his mouth, a foley catheter to drain his urine, and an arterial line in his wrist. I guess he didn't have any tubes in his ears or belly button . . .

The next 18 hours were pretty easy. He was sedated and calm. It was Thursday afternoon now and they were weaning the sedation. Just so you all know, Matthew is generally the sweetest, easiest going kid in the world. But coming out of drunkenness he doesn't do well. The pulled the breathing tube out and it seemed like all heck broke lose. He was trying to pull at every line, he was trying to roll over, he was a hazard to himself. They tried everything they could to load him up with sedation without knocking out his ability to breath. It took four of us to hold him down for five hours until they figured out that the meds they were giving him were just making him more delirious. In addition to all of this, Matthew was having difficulty keeping his airway open after they took the breathing tube out and I had to hold his airway open with jaw thrusts for about 4 hours. It was very very frustrating. Our poor nurse earned her money and then some during that shift. He finally calmed down by 11:30 pm and we were able to get a little sleep. Once again, thank you to all of the angels that have been hear with us.

Friday was a step back because on their routine daily echos they saw a mass in his left atrium. They had seen it the day before but they noticed it was enlarging. He was also holding his urine so the foley catheter that had come out on Thursday had to be put back in, not by the nurse . . . oh no, Matthew is much more difficult than that, the urologist had to come in and put in a special curved foley. Dr. Kaza also came in and said that we were heading back to the OR because he wasn't sure what the mass was. Matthew was finally awake, alert, and requesting: McQueen Juice and Daddy's juice! He wasn't ornery and his hallucinations had gone away. Poof all of that went away. We were now facing another surgery, another 2 day set back, more risk for infection, etc.

The second open heart surgery went well. It was fast and what they found was that it was not an invaginated atrial appendage or a clot, it was fluid in the posterior pericardial sack that was pressing on the heart and it was a suture line that was a little more prominent than what they are normally used to. It was a long day and I had some words with the Dr. Kaza that I wish I could take back now, but as a father (and a physician) I had some really tough questions for him and the cardiologists. I guess that underlying all of this is my skepticism that he really needed a heart transplant. I am still trying to figure out why that bothers me as much as it does. I am not ungrateful for the heart but a heart transplant is not a cure. It is another form of palliation with many more risks and many inherent complications. I can't wait for the day when he can come home. I love hospitals but they are the scariest places in the world. . .and I work in one. I think I offended the transplant surgeon but I was acting as a father and a frustrated one at that. In the depths of my heart I really do appreciate everything that he has done for us.

Again Matthew was sedate, lined up, and on a breathing machine. We get to go through all of the first two post op days again. We have narrowed some of his delirium down to benadryl (so he won't ever be getting that again) and we have switched to synthetic opiates because they have less breakdown products that are pyschotrophic.

It is now Saturday morning and we are back at it again. Our bishop came to the rescue and brought his camper up for us to sleep in. We are right next to the hospital and less than 30 seconds from Matthew's room. I got a great night sleep last night (the night before I was on a hard floor in a sleeping bag . . .I guess I am looking for a little sympathy here). To have a place to go and relax is wonderful. It was a design flaw to build a 42 bed ICU with only six parent sleep rooms. If I were a philanthropist I would use my money to 1) first try to buy the Kirtland Temple from the RLDS and 2)Build Utah a new state of the art children's hospital where every ICU bed had a parent room with it. Who wants to ever leave their children when they are in the icu?

I just spoke with Dr. Kaza and the plan for today is to pull the breathing tube out, wake him up again, start feeding him (It has been 3 and 1/2 days since he ate), adjust his PICC line, and hope that we don't have another day of "Wrestlmania" with a two year old. Tomorrow he said that we would be pulling out his chest and mediastinal drains as well as that hated right atrial line.

As for Chrissy and I, we are surviving. We have been here before and we would do it again for any of our children. For one day at home playing with trains and Misty (the dog) it will be worth it. We are so thankful (cannot say enough) about our parents, family, partners, ward, work, and our angels on the other side (Anne we know you are on assignment here). Thank you sooo much.

Friday, May 21, 2010

Matthew was born with a congenital heart defect known as Hypoplastic right heart with pulmonary atresia. We found out about his condition before he was born and 3 out of 4 different medical centers told us that we should transplant him at birth. Dr. Ilbawi of Chicago IL convinced us that transplant was always an option but that if we could by him 6-10 years with his natural heart that he would be much better off. Well, we got 2 and 1/2 years out of his heart. Since moving to Utah and really since November of 2009 Matthew just hasn't done well. He sleeps most of the day, he doesn't eat, and he hasn't gained any weight for about six months now. He got RSV in January/February of this year and since that time has had to be on ever increasing amounts of Oxygen. We finally convinced his cardiologists that something was wrong (despite a normal echo just six months ago) and had an echo. That was early March. Well the results that we got were not positive. His Pulmonary artery pressures were high because he was in diastolic heart failure. To make it simple, he was in heart failure and fading fast. Their solution was once again to put him on the heart transplant list. We have gone through the necessary steps to do that and about 3 and 1/2 weeks ago he was officially listed for a transplant. This has been a conflict with me because Chicago has been pushing us for better medical management with Bosentan and Sildenafil.

Well much earlier than we anticipated and still to my utter shock, we received a call on Tuesday night May 18, 2010 telling us that they had a "great heart" for us. I am still in shock. I was still grappling with the fact that he was on the transplant list let alone deal with the fact that he now had a heart. As a father, you always want to do what is best for your children. One of the hardest decisions that I have made is telling the transplant coordinator that we wanted the heart. That is where this story kicks off.

We had one hour to get to the hospital. Chrissy and I were both panicking. Luckily our ward had us well prepared. We through together a suitcase, grabbed a sleeping baby and headed to the hospital. We arrived at about 12:30 am Wednesday. It was a kinda "hurry up and wait" type scenario. They drew what seemed to be half of Matthew's blood volume (and reassured us that they would just transfuse him during surgery) and then let us try to get some rest in a loud, crowded Hospital bed. Lest I forget: Larry Curtis (my father-in-law)came to the hospital and helped to give Matthew a blessing. If you ever run into us in person ask about the blessing and we will be happy to tell you about some of the incredible impressions that we had. Needless to say, we waited anxiously for the surgery to start . . . it did at noon.

We waited ... special thanks to all of those who were here, called, taking care of our home, praying, putting Matthew's name on the temple lists etc... We were not alone. One funny thing happened as he was leaving for the OR. The anesthesiologist was pushing a little versed (a sedative) and it was burning through his IV. He asked if I would do it. It still hurt when I did it. I then asked Matthew Jr. if he wanted to do it and he grabbed the iv and just slammed it in. He then reached out his hand for his guardian angel and was taken from us into the OR.

At nine thirty pm his surgeon, Dr. AK Kaza came to speak with us about the surgery and its results.
Dear Family and Friends,

In an attempt to better disseminate information about the ongoings of our family and the adventures that affect us everyday we have created this "blog" to help communicate with so many of you that I know care about us. Its need was obviously brought about by the recent transplant our son received. Everyday while he is here in the hospital, we will try to update it so that you can be a part of our challenges and accomplishments.