Felt So Fine

Felt So Fine

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.


Shelly said...

Wow. I'm just speechless, Nancy. Wow! It is amazing, when you see the picture of how large his heart was, and know how sick he was, to seeing those great clips of him riding his bike and even running.

You just don't know how much this is helping me with what my sister is going through. Her paperwork will be submitted to the transplant center next week. When she is a little more ready, I'm going to share your blog with her.

A million times thank you! XO

Stephen Hayes said...

Thanks for visiting me at Chubby Chatterbox and for taking time to leave a comment. I've checked out your blog and it certainly is interesting and educational, although I'm sorry your family is going through all this. But I'm not squeamish and will be back for more. If you press the join button at Chubby Chatterbox on your next visit I'll return the favor. Have a great week.


Sue said...

I came tonight to see the pictures of his heart. It's so great to see the opening post of Spencer playing soccer...then to scroll down and remember that months ago he was fighting for his life. I have often said that I wish for a road map to show me how things will end up. If you could have known today would come as you were in your darkest hours of ECMO drama, it would be great. But that's not faith. You and your family have shown a lot of faith through all this and I am so grateful that you have shared your story with us.