Felt So Fine

Felt So Fine

Friday, March 30, 2012

Hospital Journal: Sisters

Even with all that we were going through with Spencer, we still had four daughters at home whom we missed terribly. They amazed me with their ability to cope with everything. They worried and cried about their brother and had their own emotions to deal with, but they never missed an opportunity to pray for him and were always willing to do anything that was needed if it meant bringing him home.

We had amazing help from family, especially my brother and his wife who moved into our home for several weeks at the beginning so that our girls could maintain some stability until Matt and I were able to figure out a rotation between home and the hospital. As would be expected, those months were not without their challenges at home. Grades suffered a little bit, potty-training took a few steps back, and no one (including Grandma) really likes it when Grandma has to be the mom.

The girls were able to visit Spencer a few times. We would have loved to have them there more often, but with all of the colds they were passing around to each other we just couldn't have them near Spencer, or us, very much.

The first time that they came we didn't let them see Spencer because we worried that the ECMO machine would be too much for them. Kristen, the Child Life specialist, spent some time with them though and they each were given a hospital buddy (doll) that they were able to 'doctor', helping them become more familiar with what they eventually would see.
Doctor Claire LOVED this!
We were so grateful for their hugs and smiling faces! They boosted our spirits immensely.
Paige found more creative ways to have fun with her doctor kit.


On a subsequent visit, Grandma Pat brought the girls down and then stayed with Spencer while Matt and I took them for a day out. We went to Temple Square and the Conference Center and had a lovely lunch at The Blue Lemon. Here I am with the girls in the Conference Center. Another tourist asked if Matt wanted to be in the picture, but I couldn't stand the thought of a family picture without Spencer.
This picture was taken when the girls came down in December. I took them to see the Christmas lights on Temple Square on Christmas Eve. It was beautiful and cold and very fun!
It was both heartbreaking and heartwarming to witness the love that our girls showed for Spencer. They missed him so much and were constantly trying to think of ways to make him happy. This love went both ways. For all the many things that could make Spencer sad in the hospital, he would become the most upset when we talked to him about his sisters. He would cry and couldn't even talk about them, he missed them so much. What a beautiful thing family is!

Wednesday, March 28, 2012

Hospital Journal: Supporting Cast

If the doctors and nurses of my last post were the front line of Spencer's care, then these next pictures show the reinforcements that backed them up to make sure that we won the battle.

The physical/occupational therapists played a huge role in Spencer's rehabilitation leading up to his transplant. After more than four weeks of lying nearly unconscious on the bed, not even using muscles to breathe, Spencer was VERY weak.
The first time that we stood him up he could barely hold his own weight, and then for only a few seconds. They really got to work on him and within weeks he was standing, then kicking a ball, then walking and eventually riding a bike all around the hospital.
Spencer really liked the gym. Most of the time he chose to play with the matchbox cars and race tracks. But sometimes he got creative. Here he is bowling.


This was one of our favorite games he came up with. We all laughed when he decided that the Barbie dolls would make good targets for his trucks.

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One day in gym, Spencer kept looking over at the trikes in the corner. When it was time to go back to his room they asked if he wanted to use his walker or his wheelchair. He looked at me and then looked at the trikes again, so I said, "How about the bike?" He gave a very enthusiastic "Yes!" and a new era began. After that he didn't really want to travel anywhere except by bike.
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When we rode through the CICU doors that day I thought that we would be met by cheers. We were, but they were overshadowed by "Where's his helmet??!" from every doctor and nurse in sight. I laughed because he was going about a half a mile an hour and there were six of us hovering around him, but then I remembered that ICU nurses make their kids wear bike helmets even while watching t.v. (just kidding! sort of). But we did make sure to get his helmet on our next trip home. :)

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This is Janie. One of the many respiratory therapists who worked with Spencer when he was on the ventilator. They were the most difficult for me to watch, because they had to be meanies at times.
The suctioning and percussion was very uncomfortable and stressful for Spencer, but SO good for him. I am so grateful for them! They deserve extra reward for being able to give the tough love needed.

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This is the wound team. After Spencer's surgery in October to put in the Berlin cannulas, they were regulars to our room. At first they had to change his dressings daily, then every other day, and eventually just twice a week. It took nearly an hour for this and was hard on Spencer, but like with everything else, he was so brave!
Eventually, he got used to it enough that he could watch a movie and pretty much ignore them. Tina and Paige, two of the wound team nurses were so good and helped us a TON in getting ready to come home and do this ourselves.

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The turquoise crayon trick-or-treating to Spencer is Kristen from Child Life. She was Spencer's best buddy and playmate for three months. Her job consisted of one thing: help Spencer have fun!
For the first month or so, Spencer was very guarded and wouldn't talk to or respond to anyone. Except Kristen.She was the only person who had come into his room without hurting him or scaring him. She was so awesome with him. Everyday about mid-morning she would come in with a game or project and ask him if he felt like playing with her today. He almost always said yes. It got so fun and crazy at times that I would leave because I couldn't stand the mess! I would always joke with Kristen that she was like a little kid herself, coming in our room, making a giant mess and leaving. She'd just laugh--and leave the mess anyway! :)

More than once, Spencer made "goop" with Kristen. This is a picture of Spencer with the blue goop covering his hand.
Kristen learned more about dinosaurs in those weeks than any grown woman should ever have to. But she still couldn't beat him at his favorite dinosaur board game. They had all sorts of fun! Arts and crafts, toys, games, you name it. Here they are making cotton candy.
I think that one of the greatest compliments about our Kristen came after we were home and Corinne, our 6th grader, had to write a paper on what she wanted to be when she grows up. Her choice: A Child Life Specialist. Kristen was wonderful with Spencer!

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This is Akol. He was our housekeeper. Twice a day he would come in our room to empty garbages and mop the floor. But that was only his official title. To us he was such a kind and friendly face each day.
Akol was born in Sudan and survived polio as a young boy, leaving him with a limp. But he never complained despite all the walking and bending he had to do all day long. He always asked how Spencer was doing and would share funny stories about things happening with his own children. He was so considerate of us and Spencer. We are so grateful for his friendship.

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This post is far from exhaustive regarding the great staff at Primary Children's. There were unit clerks, and dietary staff, and parking garage security, and cafeteria workers, and front desk staff, and volunteers all over the place, as well as radiology, pharmacy, and lab techs to name a few more. We became very well acquainted with all of the echo techs--and still get to see them on a regular basis. We were also very grateful for the LDS branch that held church services every Sunday and served us in whatever way we needed. I know I sound like a broken record, but really--what an amazing place!!!

Wednesday, March 21, 2012

Hospital Journal: Angels with Stethoscopes

What do you possibly say about people who literally save your child's life--over and over and over again? These angels masquerading as doctors and nurses are heroes. We are so full of love and gratitude for them. Not only did they give us back our little boy, they became family to us. They saw us at our worst and forgave us when they caught the brunt of our frustrations. They cried with us and laughed with us and listened to us and loved our Spencer as their own. As wonderful as it was to get Spencer better and on his way home, it was a sad day walking away from the CICU. I cried saying goodbye because I would miss them, but I also cried out of frustration because there just aren't words to tell them how much they mean to me.

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This is Dr. Everitt. She is Spencer's transplant cardiologist and kind of the "big gun" over his care. She has two partners: Dr. Molina, who has put up with a lot of questions from us and a lot of Nerf bullets from Spencer! And Dr. Tani, who is as kind and patient as can be and was the one on call when that phone call came in the middle of the night that a heart was available. They all were, and still are, amazing!
Dr. Everitt was the one who broke the terrible news to us that he needed a transplant. Before she even had the words out she was crying. She is and always has been so sweet to Spencer, bringing him gifts and putting up with his moods. She was also the only doctor who consistently put Spencer's emotional welfare ahead of anything else if at all possible. I've seen her on more than one occasion stop herself or another doctor mid-sentence and shoo everyone out of the room at top speed if she thought their presence was bothering him. I have to admit that I went through a phase where I would duck and run when I saw her coming because for a while she had nothing but more bad news every time she talked to us. It was too hard for me, so I would let Matt talk to her and then break it to me gently later. She's been so amazing and always has Spencer's health AND happiness as her top priority when making decisions about his care. She also has a killer collection of cute boots and skirts!

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These next pictures are Dr. Kaza. He was Spencer's surgeon. I make no exaggeration in saying he saved Spencer's life several times. We love this man! We have him placed on such a high pedestal that he may never be able to climb off. As a pediatric cardiothoracic surgeon he's pretty much at, or near, the top of the doctor food-chain. Stereotypically, that status should also come with an inflated ego and a cold bedside manner. Not so in this case!
Dr. Kaza is everything that I would want in this situation. He is extremely skilled, and proved it time and time again. Matt and I both felt such confidence in him that I had very little worry when the actual transplant day came. I knew that if anything went wrong, it wouldn't be because of a mistake on Dr. Kaza's part. In spite of this, he was very quick to give all credit to God. He said on multiple occasions that he is just the instrument. He encouraged us to pray to our God and he would pray to his and then we'd have it covered. :) He was so wonderful in that he would always ask Matt and me how we were doing; and he would look at us with a look that showed he meant it. I think he could look at my eyes and tell how close I was to a full-on panic. Occasionally he would sit down with me and talk it all through and tell me in terms that made me believe him that "It will be okay." His patience was unbelievable. I know that he survives on very little sleep and a lot of coffee, but when we had questions, he suddenly had all the time in the world.
Early on when we met him, I found it odd that he kept referring to Spencer as "the baby". But I soon realized that this is what he refers to all of the children as. They truly all become "his babies", and he worries over them and prays for them as his own. He's told me that it is very hard on him when he loses one and he spends a lot of time with his priest--the only person that he is legally able to talk to about "his babies". He was so kind to Spencer and very sensitive to his moods. He was one of the few who could get "knuckles" when Spencer wasn't in a great mood. Spencer really likes him and talks about him sometimes. A few weeks ago, Spencer was trying to come up with a name for one of his stuffed animals and he decided "Kaza" would be a great name.

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It took me weeks to figure out the different "types" of doctors coming in and out of our room, and months to understand the fine nuances of their staffing system. In addition to the transplant team and the surgeons, we got to know the Cardiac ICU docs very well. The CICU was staffed with cardiologists who were on the unit, right outside our sliding glass doors, twenty-fours hours a day, seven days a week. I wish I had pictures of all of them, and hopefully one day I will. But just from a quick visit--we don't want to be those house guests again that just. won't. leave!

Many of the things that I said about Dr. Kaza could apply to all of these CICU doctors as well. Their patience, caring, and skill was so impressive. Dr. Frank, Dr. Vernon (shown below), Dr. Witte, Dr. Mack, who was always SO nice and was so patient with Spencer when he needed to look at the Berlin, letting Spencer play with his watch or tell Dr. Mack what time he could come back and look at the Berlin; and then Dr. Delgado. We love her so very much. She carried us through some very critical days and we feel a huge debt to her for her dedication to doing what was absolutely the best thing for Spencer when a big decision was being made. Plus, she gives great hugs!

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This is Dr. Pribble smiling at the camera in the next picture. I left him out of the list above because he deserves his own tribute. Actually, if you ask Matt and me, he deserves anything he wants! Along with Dr. Kaza, he better not lose his balance because it would be a long fall off of his pedastal. :)
The day in the OR that Spencer went into cardiac arrest, Dr. Pribble was the anesthesiologist in the room. (Yes, he's a cardiologist AND an anesthesiologist.) They shocked Spencer three times with the paddles--creating a sizable burn on his left side--and when that was unsuccessful they began chest compressions. Dr. Pribble was the one who kept Spencer's heart beating, delivering oxygen to his brain, for almost fifteen minutes while Dr. Kaza worked to get Spencer on ECMO. We found this out a couple days after the fact from a nurse who had been in the OR. Dr. Pribble would never have told us this himself, probably because to him it's just another day on the job, but honestly, I look at him in total awe. What he did was the difference between life and death or at the very least, brain damage. We tried a few times to thank him but he seemed uncomfortable with that level of emotion, so we stopped trying to share deep feelings with him but remained ever star-struck.

Whether he really deserved the confidence that we had in him or not, he was the doctor that when he was on the unit we truly believed that nothing could go wrong. He was just too good of a doctor. Because he's an anesthesiologist too, we get to see him once in a while still when we go in for Spencer's biopsies. We always breathe another sigh of relief when he's scheduled those days as well. I don't think it's just a biased opinion though, because that same nurse that was in the OR during the code told us that when she saw that Dr. Pribble was scheduled in the OR that day, she breathed a sigh of relief too.

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There are a few other doctors who don't really fall into the above categories, but I want to mention them. Dr. Schunk (from the ER), Dr. Chavolla, Venu, Dr. Leissemer, and Dr. T. Bennett were involved in our care off and on from the beginning and we are so grateful for the different roles they filled.

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I would be awful if I didn't mention Todd, a fourth-year med student, who through luck of the draw happened to be in the right place at the right time to become an absolute life-saver for Matt and me. He was just starting his four-week rotation on the PICU the day we showed up. Working under an MD's supervision he was over Spencer's care. This is what played out about six times a day for the first week: Intimidating group of doctors would walk into the room with Todd in tow and drop some big bomb on us using all sorts of big words and scary scenarios then ask, "Do you have any questions?" We would give them our best deer-in-the-headlights impression and shake our heads no. Then they would walk out. Five minutes later, Todd would come back in to write something down in the chart and we would pounce. I think we nearly suffocated him with questions. We asked everything we could think of and then some. He would spend so much time giving us all the answers he could, and if he didn't know, he would find out. Perhaps because he was a student we felt a little less intimidated by him and felt that we could be open and honest with him about our fears and worries. He was truly the first of many miracles we were blessed with after arriving at the hospital.

On the day that Spencer was put on ECMO, Todd finished his shift at 7am--the same shift that had probably started about five months previous--and was finally able to go home for his ONE day off. He chose to stay at the hospital to be in the OR with Spencer. After things calmed down in the OR, he asked if anyone had been out to talk to us yet, and he volunteered to do so. He found us in the waiting room and sat with us for almost a half an hour. As he told us what had gone on in the OR he got tears in his eyes several times. I was so touched by how compassionate and patient he was. Knowing that he was a student, I was a little bit worried about him, realizing what he had just witnessed and I told him so. I asked him if he'd ever seen a code before. He got tears again and said, "Never one like that".

His four-week rotation ended just before Spencer went on the Berlin heart and his next round was in a clinic in Africa for four weeks. We've been in contact a few times through email, and nothing would make me happier than to see him on the staff at PCMC one of these years. Wherever he ends up is a very lucky place. He has what cannot be taught and he will be an incredible doctor!

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And now for the nurses! Best nurses in the world, right here at PCMC; and somehow, of all the nurses at PCMC, we were assigned even the best of those to our room. I don't have pictures of ALL the nurses that took care of Spencer over the months, and there are some who were only in our room once or twice and have been lost in the shuffle of all that happened during that time. But there are several amazing nurses that I can't go another day without paying tribute to the exceptional work that they do. Barb, Karla, Beth, Cindy, Brian(s), Nate, Kyler, and Chad, were all night nurses who made it possible for us to run the marathon by giving us the peace of mind that we needed to walk out of Spencer's room each night and get a much needed good night's sleep so that we could be ready to face whatever came at us the next day. Nancy was a nurse on the PICU side who treated us with such compassion that I will never forget her. The transplant team nurses: Michelle, Em, and Emily continue to take care of us and guide us through these unfamiliar waters. The rest of our nurses were around enough to find themselves in the cross hairs of my camera at least once. Here they are:

The nurse that is shooting Spencer in the following two photos is Mindy. We love Mindy! She was his night nurse quite regularly from the very beginning. She was so fun and positive and happy and compassionate. She had a gift for knowing what would make Spencer the most comfortable. When he was sedated, she realized that if she lifted his arm for him and put his hand up by his face, he could rub his own eyes. He seemed to really like that.
She always went the extra mile or three in trying to make Spencer happy. So often I would come back from dinner break after shift change to find Spencer and Mindy finger painting or having a foot bath or starting up a movie night with popcorn and slushees. They would be laughing and having so much fun that I felt like I was intruding on a private party! We just always felt so comfortable leaving him in Mindy's good care.

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This is Adrienne. She was with Spencer from his first day on ECMO. She was great with him and so good to answer all of our questions. She had such a calm manner about her. She was a really good friend to us as well. One day when she was on the unit for something else, not working a shift, she came with me to the Care Conference just to give me support and help me understand things better.

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These next two pictures are of ANGIE! Happy, smiley, awesome, Angie! She was the ECMO nurse his first day and when we walked in the room and saw him for the first time on ECMO, she was wiping tears away. She has such a tender heart and was so fun and sweet with Spencer. She was always happy and telling funny stories. But when she told stories she would laugh and hardly be able to get the story out, which was funnier than the story itself. She was also what I referred to as a "Rock-Star Nurse". That was my phrase for those nurses (and there were many, including Mindy and Adrienne) who were so smart and skilled and capable that I had 100% confidence in their ability to take good care of my little boy. It would take me all day to list the many ways that she thought of something that would make Spencer feel a little bit better. She was always looking and thinking about what she could do for him. She also is just so dang cute, and I'm pretty sure that Matt and I both had crushes on her; and walking around the hospital with her made me think that we weren't the only ones! :)
I was driving to the hospital the morning of Spencer's transplant worrying and willing myself there faster. I kept wondering who was on shift today and then Matt called and said, "Angie's here." I just started crying. It was certainly a tender mercy from Heavenly Father. It seemed so appropriate that she should be there that day. She had brought us from start to finish. Plus, Spencer was SO comfortable with her. She brought him a toy horse once and when I asked him where he got it he said, "My nurse." That was HUGE! He knew her and trusted her as "HIS nurse". I knew that she could help him through the scary hours ahead of him the day of his transplant. These pictures are of the two of them that morning. It was so very comforting to send him off to the OR with Angie at his side.

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This is Monique. Another ECMO rock-star. She was one of those nurses who's years of experience is far more valuable than anything from a book or a lab value.
When Spencer was in kidney failure and the doctors were telling us all sorts of scary scenarios and Matt and I were just sick over it, she would say in the most care-free voice, "Don't even worry about it. They'll be fine. Kidneys are just slow. I've seen this tons and they always come back." She continued this little pep-talk over and over, and we loved hearing it so much that if she wasn't working in Spencer's room we would seek her out to tell us again. And she was right! She was very smart and very comforting to have around. And fun! We laughed with her a lot as well.

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Ahhhh.......here are the mother hens. The two nurses on the right are Tina (middle) and Lizelle (far right). They are from South Africa and have the most delightful accents.
They were Spencer's night nurses for a couple of weeks, with hardly a day off, while he was on ECMO. They were unbelievable with him. I really think that he would have had a lot of little complications that could have turned big, if they had not been there being so thorough and consistent with his care. I called them mother hens because with their accents, especially Tina's, they just clucked around him taking care of him, calling him "My sweet love" and "Oh my dahling". It was so touching and also very entertaining. They were a great team and I didn't hang around long once they came on shift because I felt that I needed to get out of the way and let them work their magic. They took an extended holiday at the beginning of November to visit family for a few months and I cried as I hugged them and said good-bye.

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This is our first outing to the Spiderman statue. The smiley-guy behing Spidey is Eric, upon whom I bestow the title: The greatest nurse practictioner on the CICU! Although he does have some stiff competition. He was just great in so many ways. Very smart--one of a handful who seemed quite comfortable with the Berlin from day one. He had a very infectious mood and even Spencer had difficulty staying grumpy around him. In fact, if for no other reason, Eric earns his title for coaxing the first smile and laugh out of Spencer after his heart transplant. That was after nearly five days of a very sad little boy. What mother wouldn't love him for that??
Eric was public enemy #1 whenever Spencer loaded up his Nerf gun. Eric also taught Spencer the fine art of ambush when he jumped around the corner with a 60cc syringe loaded with water. Spencer later demonstrated what he had learned when we came back to the CICU to say goodbye and he caught Eric totally unprepared. We laughed and had fun, but I really hope he knows how very much it meant to us that he brought so much happiness to Spencer's life in the hospital.

In the Spidey picture, kneeling next to the wheelchair, is Gail. She was Spencer's nurse a lot in October and she was great! There was one week where Spencer was on so many different medications and they were all starting to interact with each other and cause side-effects which would then be treated with more different meds and it seemed that we'd never get on top of it. Gail made it her personal mission to get him off of those meds. She worked for three days weaning meds as quickly as was safely possible and after those three days we saw a huge improvement in his condition. That is just one example of the great care she delivered.

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This cute little butterfly is Courtney. I see this picture and I just smile because it is so her. She just reminds me of a happy, sweet, fairy spreading joy. She was a great nurse and a good friend and an excellent listener with a good shoulder to cry on. She also came to work equipped to be whatever Spencer needed that day; nurse, primary teacher, barber, playmate. She's just a great person!
Here she is holding him steady in PT. We love you, Courtney!

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This guy on the right of this picture is Chris. He is the nurse in charge of ECMO/Berlin.
He was never Spencer's personal nurse, but because Spencer was on all of Chris's fun machines he became a regular in our room. Whenever a nurse or doctor had questions about a machine, Matt and I would sit in the corner and chant, "Call Chris. Call Chris. Call Chris." He was great and always put us at ease about things. However, he owes me some pictures, so if anyone from the CICU reads this please give him all sorts of grief for me. :)

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This is Cory(l) and Lisa(r). Lisa was so fun to have in the room. We would visit and laugh. She was working the day of his transplant and it was so nice to get a big hug from her and see how excited she was for us.
Cory was one of the many nurse practitioners on the CICU. He, along with Grace--who gave Spencer a pair of Transformer pj's to wear instead of a boring hospital gown, Stephanie, Janice, Deb, and Trudy, took excellent care of us and loved Spencer.

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I really don't know how it is possible that this picture is the only one we have of Michael. He is the nurse sitting at the end of the table wearing green scrubs and a shiny head. :) He was with us from beginning to end as well, and you can see that we were lucky enough to have him with us at our Thanksgiving table.
Michael is just someone you can't help but love, no matter how unlovable he tries to pretend to be. He's such a smart nurse, and was very kind and tender with Spencer. Until Spencer learned how to aim a Nerf gun, at which point Michael's head became public enemy #2. Which was Spencer-speak for "you're one of my favorites"! He was very sensitive to what was going on with us. When I was having a particularly hard time early on, he sat me down in a chair and kneeled down in front of me and said, "Talk to me." I appreciated that so much. We were so grateful to see him anywhere on the unit. It was just nice to have Michael around. I teased him though that with his gift of gab he'd be in trouble if Spencer woke up speaking with a Brooklyn accent! :)

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And now, Jean. I had to save the best for last! Again, a giant crime against nature that THIS is the only picture I have of our friend, sister, favorite nurse. She's at the far end of the table, on the right. We must have just been having too much fun together for me to even think about the camera. I even said several times, "I need to get a picture of you and Spencer. Don't let me forget." But we forgot.
I just don't even know what I can say here that will do justice to how much we love Jean. We don't just love her because she was a great nurse. She became like a sister to us both. Once in a while Matt or I will just look at each other and say, "I miss Jean". She has a great sense of humor with just enough sarcasm to let you know that you're getting the real deal with her. She also would absentmindedly hum this little five-note tune that just sounded so happy. I hum it around the house now and feel happy thinking of GOOD hospital memories. I'm so glad that she was willing to put up with us for so long! Love you and miss you, Jean!

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If you've really stayed with me all the way through this lengthy post, thank you. I feel that all of these wonderful people deserve every bit of praise and honor we can give them!

Saturday, March 17, 2012

Hospital Journal: ECMO & L-VAD & Berlin...OH MY!

WARNING: This post contains graphic images! If you get squeamish, nauseated, light-headed or grossed-out easily, or are just generally of weak constitution, back away now and move on. There. Consider yourself warned.

For this post, I thought that I would take a stab at explaining some of the technical mumbo-jumbo that we routinely throw out there as if it were common jargon. As the weeks wore on we learned from doctors and nurses that Spencer was becoming quite a case study for them. He was on a variety of machines and for a time was in multiple organ failure, so his chart now provides them with useful information for future needs.

The first major machine that Spencer was hooked up to was called ECMO which stands for Extra Corporeal Membrane Oxygenator. This heart-lung machine saved his life and kept him alive until a better long-term option was available. For that I am so grateful for this technology, but in all honesty I have never in my life been so scared of anything as I was that ECMO machine.
In the above picture, the two dark red tubes that you see coming over the top of his bed are carrying his blood. One is coming out of his carotid artery and the other is returning the blood through his jugular vein. The third big tube attached to the side of the bed is also carrying blood to his femoral vein. These tubes transported the blood through a filter and an oxygenator, after which it was returned to the body. For several days after he was put on this machine his own heart didn't even beat. I put my hand over his chest once and all I felt was the rise and fall from the ventilator and a mechanical vibration from the ECMO. The ventilator itself wasn't even necessary for life. The blood was being oxygenated through the ECMO not his lungs, but they kept him on the ventilator to keep his lungs from collapsing. ECMO has so many risks associated with it that they had two RNs inside his room 24/7. One was his personal care nurse in charge of his meds and such, the other sat right at the ECMO machine watching for clots in the tubing and monitoring the flows. I'm sure that my "technical" description is still very "layman" but it was too nightmarish for me to want to know much more than that.

Spencer was on the ECMO machine from October 6th until October 16th. During this time he had three different chest tubes, underwent a cardiac cath procedure, echocardiograms almost daily, and chest x-rays at least daily, a thoracotomy to stop some internal bleeding, and two bronchoscopies to clean out his lungs. At one point he was in heart/kidney/respiratory failure and it was normal to have twenty-plus doctors and nurses coordinating his care at rounds. From Oct. 10-Oct. 31 he was listed as a Status 7/inactive on the transplant list because he was too sick to be a good candidate for transplant. He actually had two very scary episodes of internal bleeding while he was on ECMO. The first was resolved by doing the thoracotomy. That day, when we came in on the morning of October 8th, the nurses told us that he got "lots and lots" of blood last night. Later the night nurse said to us, "I've NEVER given that much blood before". The second time, he was scheduled for surgery the following day so they just kept giving him blood to keep him going until he got to surgery and they were able to stop the bleeding. These instances as well as his two open-heart surgeries, and just general maintenance throughout his hospitalization required A LOT of blood products. I asked the transplant nurse recently for the tally:

Packed Red Blood Cells: 39 units
Fresh Frozen Plasma: 19 units
Platelets: 24 units
Cryo Precipitate: 4 units
Total Blood Products: 86 units
That is equivalent to replacing his entire blood volume twelve times over!

How grateful we are to those eighty-six people who selflessly chose to donate blood last Fall.

On October 16th Spencer had reached a point where the risks of staying on the ECMO outweighed the benefits, so even though his kidneys were still failing and his lungs were fair at best, the decision was made to take him off of ECMO and put him on the L-VAD. This required open-heart surgery to place two cannulas into his heart. One that would pull blood from his left ventricle, and the other to carry the blood back to his aorta. Here is a picture from that surgery.
This is a picture of his heart on the monitor in the OR.
This picture was taken on October 25th. It shows the L-VAD (left-ventricular assist device). This was similar to the ECMO in that it carried the blood out of the body, ran it through a centrifugal pump and returned it to the body. It was different though in that the tubes coming out of his body were much more stable--coming from his abdomen instead of his neck--and he could move a (very little) bit more, but it didn't have a filter or an oxygenator. After a few days, they decided that they needed a filter on the circuit so they improvised and added a filter. It worked well enough to save him from being hooked up to a dialysis machine.
On October 26th they took him to the OR and switched him from the centifugal pump shown above, to the Berlin heart. This device was not yet FDA-approved and we had to get a "compassionate care" exception to be able to use it. It was ordered from Canada and they sent two of everything in case something failed to work properly. Here is a picture of the Berlin heart taken on October 27th when he was up in his chair. Fortunately, he didn't have to have that giant of a dressing for long.
Here is a close-up, taken by Dr. Mack, of the Berlin heart. The nurses had to inspect the device with a flashlight every four hours looking for clot formations. Dr. Mack came in at least daily to look for clots as well.
Over the 7 1/2 weeks that Spencer was on the Berlin heart, he did so well. It is such an amazing device--the first of it's kind for pediatric patients. It kept him alive while allowing him so much freedom. After nearly a month of sedation, he had lost a lot of muscle strength, so as soon as he was able, the various rehab teams began working with him. It was so easy to see why the doctors were so excited to get him on the Berlin. By the time that he received his new heart, he was in excellent shape for surgery. Here is a picture taken November 24th as he is goofing off at bedtime.

This picture was taken December 11th and it gives a good view of the Berlin heart and the dressings that covered the cannula sites. In this picture he was in the middle of a 15-lead EKG. All of those wires were only connected to him for about five minutes. That little sparkle in his eye is because he was just about to load up his marshmallow gun with marshmallows from the cup in his right hand. We took this picture on December 11th. By this time we had rearranged his room and gotten enough machines out that we were able to bring a couch in. It was fun to snuggle on the couch with him and play games or watch movies. It also made for a somewhat tolerable place to sleep on nights that he needed one of us there with him.
This is a great picture to showcase what exactly the Berlin heart is. Spencer is modeling it with his left hand. That is the actual "heart". The heart was connected by a 6-foot long hose to the blue cart on the left side of the picture. That cart is the "driver". The computer on top runs the driver and the driver is a pneumatic compressor that pushes air in and out of the bottom of the Berlin heart which causes it to "beat" as it pumps the blood through his body. It's hard to believe that he was tethered to that thing for nearly two months. I am so grateful for it; I know that it saved his life. It was very cool to find out that the Berlin heart received FDA approval for use in the U.S. on December 16th--the day of Spencer's transplant.
If the Berlin heart wasn't meeting the parameters set on the machine due to various causes such as low blood volume, arrythmias from his own heart, or a kink in the tubing, it would beep SO LOUD! It sounded like a European police siren. The first week or so that Spencer had the Berlin heart nearly the whole CICU staff would come running when that alarm sounded. Spencer was only the third patient to have the Berlin Heart at Primary's and the last one was two years previous. So they were getting used to it again and some of them had never been around it at all. In comparison, at one point in December, Venu, a doctor, told us that they could hear the Berlin alarm clear over on the PICU side and if someone asked, "What is that?" They would reply, "Oh, that's just Spencer". Nearly all of the alarms though were typically because Spencer had sat up in bed and kinked the tubing coming out of his abdomen. By December, Spencer had learned how to trouble-shoot the alarms himself and would generally have the tubing all straightened out before anyone had a chance to respond to the alarms.

Here is Spencer with his entourage. We joked that he would grow up to be a rock-star because he was getting so used to going everywhere like this. Initially, we were not allowed to go for walks without at least two RN's and a third staff member. They eventually relaxed this rule and allowed Matt or me to be one of the three people.

We said goodbye to the Berlin Heart on Friday, December 16th, after fifty days as a Status 1A on the transplant list, when Spencer received his new heart. (Dr.) Dale, the perfusionist, washed it out and sent it home with us as a very expensive souvenir.

Five days after Spencer's transplant, on Dec. 21, he was transferred off of the CICU and we went upstairs to the 3rd floor/Surgical Unit. We had expressed interest in seeing Spencer's old heart, so that evening the pathologist came to our room carrying a small plastic bin. We told Spencer what it was and asked if he wanted to see it or if he'd like us to look at it somewhere else and he said he wanted to see it. It had been sitting in formaldehyde for several days so it wasn't pretty, but we had kind of prepared ourselves for that. I was shocked at how BIG it was. I can't understand how it even fit in his little chest.

At the top and the bottom of the heart you can see two plastic pieces coming out. These are the ends of the Berlin cannulas. The pathologist said that they would like to keep his heart and study it and use it at the UofU since with those cannulas in it, it was such a rarity.

It was so therapeutic for me to be able to see it and hold it. During the months leading up to transplant I would cry every time I thought about them taking his heart out of his chest. I felt like I would be losing a piece of him. But as I held it, I realized that while I was very sad that this happened to him, in reality this heart was just a muscle--a piece of meat--it wasn't Spencer. I also came to understand how very sick his heart was and what a good thing it is that it isn't in his chest anymore. It really was the final thing I needed to be able to fully accept his condition.