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.

Hospital Journal: Spencer--admit to discharge

Spencer has been home from the hospital for just over ten weeks now--almost as long as he was IN the hospital. We lived a lifetime in those thirteen weeks. The Caring Bridge blog that I used throughout Spencer's illness was a wonderful tool and a huge blessing in being able to keep family and friends updated on his status, and I'm so glad that I have that record. However, I want our experience to be documented here on our family blog as well. So my next several posts are going to highlight various aspects of our hospital stay. These posts are very selfish in nature as I really just want them on here for myself, but I'm also happy to share these memories with you. As things have started to settle into our new normal I've been able to take the time and look through all of the pictures that we took at the hospital, so here are just "a few" of them. Nearly all of the pictures are obviously of Spencer so my first post is just a chronological look at the different "faces" of Spencer as he went through so many stages.

This first picture was taken the night of October 5th. This was easily my worst 24 hours in the hospital. The doctors had informed us that afternoon that Spencer needed a heart transplant to survive. There were doctors and nurses in and out of our room constantly that day. Dr. Chavolla and Dr. Hubbard came in at one point and wrote a phone number on the board and then gave us very unconvincing smiles as they said, "That's just the number for the cardiothoracic surgeon. Just in case. We're sure that we won't need to call him. But just in case. If we write it then we won't need it." They left and Matt and I were like, "Just in case WHAT?" Then they were back again telling the nurses that the crash cart was just outside the door and Dr. Kaza's number was on the board. Then another big smile to us, "But don't worry, we won't need it." Eventually our brains caught up to what they were telling us--that they were going to put him on the ventilator the next morning but they were so sure that he would go into cardiac arrest when they did it that they were going to do it in the OR to be ready to put him onto ECMO. They also said that there was a very good chance that he wouldn't even make it through the night without arresting. Thus the reason for the crash cart and the surgeon's number in case they had to get him onto ECMO right there in the room.

After learning this information we had a meeting with about ten doctors and nurses including the transplant team. Lots of tears in this meeting, but mostly from the staff. We were in too much shock to really cry yet.

After the meeting I called my brother, Paul, and through tears told him how bad it was and asked him to bring the girls down as soon as possible. He did us one better and brought not only our daughters but also his wife, my parents, my sister and called my other two brothers and their wives as well. Matt called his mom and his two brothers and their wives also. They all showed up around 7pm and we broke every rule the PICU has by crowding in that room so that Matt and my dad and our brothers could give Spencer a priesthood blessing. We also took the girls into a private room and explained what was happening. We didn't hold anything back because we knew that they needed a chance to say goodbye if this was their last time to see him. A very difficult night.

The dog "pillow pet" was a gift from his sisters. He had wanted it for a long time and the girls were insistent that Grandma and Grandpa stop and let them buy it for him on their way to SLC that night.
This is not my most flattering picture. Earlier in the day I was self-consciously making my excuses to the nurse for my red, puffy eyes and he said, "Oh, that's just the PICU look." This is early in the morning on the 6th. We just could not get close enough to him that whole night.
After Spencer was put on ECMO, I didn't take any pictures for a while. I took one of his room but purposely made sure that someone was blocking him from my view. I was sure that I would NEVER want to see anything to remind me of him like this, ever. Then about one week later, Matt was home with the girls and I was at the hospital alone. It was later in the evening and I was sitting in the room watching him when the "Code Blue" alarm sounded for the room right next to us. A sweet little one year old girl went into cardiac arrest and the whole unit just erupted. The rooms on the unit are only separated by glass doors and a curtain so I very nearly had a front row seat to the whole thing. Within minutes the parents were standing outside of her room, right outside of my door. They were crying and hugging and then my nurse was crying. I realized that the baby had passed away, so I pulled my curtain shut and cried and prayed for those parents and prayed for Spencer. I felt so sad for them and at the same time I felt so grateful that it wasn't me. And then I felt guilty for those thoughts. After a few minutes I looked at Spencer and it hit me that at any minute it COULD be me and I had an overwhelming urge to start taking pictures. I realized that every moment could be my last to see him and I was crazy for not wanting to hang onto every second of his life.

I took many pictures that night and after, but I have given Spencer full veto power over what pictures I put on the blog. He has been very consistent in his wishes that he just doesn't want any "from when I was asleep". So this picture is the only one from that night that will go on the blog.

These are the camo hiking boots that Aunt Anneke bought for us. The nurses said we needed to get him some boots to prevent "foot drop" during the weeks that he was sedated. So we would put these on him for a few hours at a time throughout the day. It was really cute! I can't wait to watch him wear them out.
This picture was taken on October 27th. He was off of ECMO and onto the Berlin heart which meant that he could finally be less sedated and get off of the bed. This is from the first time that we got him up into a chair. It took seven people, not counting Matt and me.
This was October 29th and the first time that he attempted any sort of activity. It was amazing to watch him. It was so difficult for him to move his arms and hold the brush and his movements were so slow, but he didn't seem bothered by it at all--just determined to paint that star.
Thank goodness for DVD players! Mickey Mouse Clubhouse, Spirit: Stallion of the Cimarron, and How to Train Your Dragon are forever etched into the brains of our nurses.
Spencer was extubated (taken off of the ventilator) on October 30. This picture is three days later when I asked him to smile for the camera. What a sweetheart for even being willing to try!
Finally! November 7th was the big day. We had been telling Spencer about the Spiderman statue on the third floor and he was excited to see it. It took some real convincing and the right combination of staff to get permission to leave the unit, but we finally made it. His first big outing!
Showing off his first lost tooth! (November 19th)

Here he is being a stinker for the camera after Thanksgiving dinner. Matt's cousin sent this cute dinosaur box as a gift and he carried it with him everywhere for a few days.
November 25th, being silly with Dad. Spencer covered his hand with the silly putty that he made with Child Life.
Snuggling up for the night with the little bear that cousin Kate gave him. (November 28)
On November 29th Spencer got to go outside for the first time. We took him for a ride to the Angel Garden at the front of the hospital. We were all so worried that he would get cold so we bundled up his Berlin heart with blankets from the warmer. When we got back to the room his temp was up. Guess we did a good job!
Here he is on December 4th, playing with his dinosaurs on the floor of his room with Dad. Spencer's was a very unique situation. The Berlin heart had allowed him to get strong and healthy enough to do things like this. He was really no longer a CICU-type patient, but the Berlin heart is a CICU-machine. So they didn't quite know what to do with him. We were kind of creating new protocols as we went.
Going for a walk to see the PICU Christmas tree brought from "Festival of the Trees". He inherited a few items from that tree thanks to some nurses and their sticky hands. :)
Just having fun! (Dec. 10th)
So great to see these smiles again!! (Dec. 11th)
Here he is showing his excitement over the volcano that he made and erupted. (Dec. 13)
Even heart failure won't get you out of homework! Here he is reading "Hot, Hot, Hot" with his angel teacher, Mrs. Allen on Dec. 14th.
Showing off the lego truck that he made. (Dec. 15th)
December 16th, Transplant Day!! We had a few hours to kill before the surgery and he really wanted to go to the playroom. Here we are on our way back to his room.

Picture with Dad and Mom before his transplant surgery. Darn kid wouldn't smile!
Angel's Hands Foundation, based in SLC, gave Spencer this iPad so that he could watch movies, play games and do Face Time with his sisters. It was such a wonderful thing for him! The founders of Angel's Hands brought it to Spencer themselves and they were the most kind-hearted, wonderful men I think I've ever met.
Here he is on Dec. 20th, just four days following his transplant surgery, back to cruising the PICU/CICU on his bike.
Eating lunch on Dec. 20th while Dad lets the last three months catch up with him.
A visit and a Christmas present from Ty Corbin, Paul Milsap, Earl Watson and the Jazz girls of the Utah Jazz. (Dec. 22)
Going for a bike ride on Dec. 22 to watch the ice sculptors. They brought in blocks of ice and spent the day using chainsaws, chisels, and torches to create Santa in his sleigh with his eight little reindeer, plus Rudolph. So fun! This walk was a HUGE milestone because it was the first time since taking Spencer to the ER on October 1st that we went anywhere unaccompanied. I was at home with the girls, but Matt later told me that it was a very weird feeling.
Honestly I don't know how I don't have 1000 pictures of Spencer shooting a gun. It became a theme. He started out with a Nerf gun from Uncle Mike, then a marshmallow gun from Child Life, then a few more Nerf guns, then a bigger marshmallow gun, and finally a long rifle from cousin Calvin at the Felt family Christmas party. The entire CICU staff deserve medals for cheerfully humoring Spencer's coping technique of shooting anyone that walked into his crosshairs. Especially Eric, Michael, and Dr. Molina!
Just chillin' on Dec. 27th in his room on the 3rd floor.
This picture was taken Dec. 30th and it was the first time in three months that we saw his happy little face without a tube on it. What a journey!

Out & About

Last week, Sky View High School (a local high school and my alma mater), held their "Cause Week". Every year they pick a "cause" to raise funds and awareness for, and this year they picked Spencer. We were very surprised when they called us in December and explained who they were and what they wanted to do. What a great tradition that is! The exec council was in charge of it and they were so fun to work with. What amazing people they all are. Here is a picture of Spencer with the exec council at the kick-off assembly that they held last Monday. Thanks to all of them for a wonderful job. Go Bobcats!!
The big event of Cause Week was the "Spencer Sprint". A 5k/1m fun-run on Saturday morning. Thanks to the awesome results from Spencer's biopsy on Friday--NO REJECTION--his meds were decreased and we dared bring him to the race. He rode in the double stroller with Claire until about 30 yards from the finish line when he climbed out of the stroller and RAN all the way to the finish line with a big crowd cheering him on.

Here he is with his kindergarten teacher, Mrs. Allen, and three of his classmates who came to the race.

And here he is enjoying the ice cream sandwich after the race.

Later that day, the weather was SO beautiful that Matt got Spencer's new bike ready for action and Spencer wasted no time in breaking it in.
This, right here, is the image that I kept in the very forefront of my mind all through those months in the hospital. This is all I wanted.

A Tale of Two Nicoles

Our Colie girl is quite the dichotomy. Last fall within a two week time period she went from shooting her first deer:

To taking center stage with her violin and enriching us all with a little culture:
We love our beautiful tomboy!

Much more than extra credit

Last September on the Sunday before Spencer got sick, Nicole informed me that she could get extra credit in her history class if she went to "some war thing at the fairgrounds". I probably would have just brushed her off, not wanting to make the drive, but she really needed the extra credit. Luckily, I had seen an article in the newspaper the day before, publicizing The Traveling Vietnam Wall Memorial. It sounded like it could be neat so I asked the rest of the family if they wanted to go but there were no takers. To be nice, I took Claire with us so that Matt wouldn't need to worry about her at home and we were on our way. Throughout the drive I kept looking at the clock on the dashboard trying to gauge how quickly we could look at the memorial and be home again--just long enough to get the points and we'd be gone. As I turned the car onto the street adjacent to the fairgrounds, the sight before me took my breath away. Covering a very large grassy area were row upon row of American flags. The mood in the car changed immediately. I was no longer worried about the clock or the extra credit. There was a very reverent feel as we made our way across the grounds toward the wall. Nicole shared with me the things that she had learned about the Vietnam War and I added my own thoughts here and there. I remembered hearing stories as I grew up about a local boy who went to Vietnam and was killed. He was an only child. Years later when I worked as a nurse, his mother, Verla--now a widow--was a long-term patient of mine. She was the kindest, sweetest woman I knew and it was a rare moment to see her without a smile. But there was a sadness in her eyes and when she spoke of her son, Verla's grief was painfully visible. I told Nicole this story and we found Richard's name on the wall. I let Nicole and Claire give a donation for a rose to put next to the wall. I found myself so grateful to the organizers who had brought this exhibit to our town to help us all remember. I was also very grateful to a history teacher that encourages her students to actively learn the past. And I was most grateful for the thousands and thousands of soldiers who made the ultimate sacrifice for my freedom. What a great thing to be able to teach my children, and be reminded myself, of those things that we should NEVER forget.