Ring, Ring, (or more like Buzz Buzz)

One Saturday night in September, it was past 11 pm, Al was asleep in bed, mom was asleep watching TV and dad was on the computer. Suddenly, dad heard a faint buzzing sound and realized it was the phone. Mom had put her phone on vibrate earlier and forgot to switch it back to ring. He saw there were 20 missed calls! Allison had tried several times and then had finally called Grandma and Grandpa to try and track us down. They called a bunch of times over the course of 20 minutes. Finally got in touch with Allison and

there was a potential donor and it was time to get to the hospital.

Mom and Dad had already made a list of everything that needed to be done to leave the house quickly and had a bag packed to go. Poor little guy got pulled out of bed and thrown in the truck not knowing what was going on. He stayed quiet and awake the entire drive while dad sped off to the hospital. Somehow they made by midnight which meant they had technically arrived within an hour of the first missed call.

Al went straight up to the CICU where he was expected but no one had heard yet about the status of the transplant. His nurse drew some blood to run some labs. He got weighed in - 6.7 kg, took his first dose of Neoral - the main immune suppressant that he'll take for the rest of his life and got all set for surgery - assuming it would go through.

His first dose of the Neoral was not fun. Because the liquid form of the med is so sticky and oily, he can't have his binky for 10 minutes afterwards. He was super unhappy about that and screamed and screamed and just about woke up all the other babies on the unit!

Finally he chilled out and got some rest and so mom and dad decided to get some rest too.

Then at about 4 am, Dr. Goldberg came in and woke up mom and dad. He said: I'm going to fly to the place where the heart is to pick it up. From what I've heard - its a good heart. Mom and dad signed consent and he was off on his way. (Because organ donation is anonymous, the recipient's family is not to be told any identifying information about the donor including their location. In this case it was in some city that is about 1 hour 45 minutes by airplane) The surgery was planned to start around 8 am.

When he woke up, Alan got some last snuggles with mom and dad.

A little while after 8, he went off to the OR to start the surgery. The surgeon for this procedure, Dr. Max explained that it would be a little more complicated than a normal transplant. Because of all of his previous procedures, Al's pulmonary arteries were very narrow and these would have to be fixed as well.

Mom and dad went off to the waiting room again to wait with Al's grandma's and grandpa's. This time Allison and Carrie were bringing the updates. The surgery would normally be about 6 hours, but in usual fashion for Al, it took a lot longer than that - pretty much all day.

Mom and dad got word that the chest was open and that the scar tissue was being cut through. Once the doctors got word that the new heart had landed in Denver, he was put on the heart/ lung bypass machine. The next step was to work on the pulmonary arteries. Finally, Dr. Goldberg came back to the hospital, with the cooler. He said: I saw the heart. Its beautiful. And he dragged it off into the OR. The surgery continued for hours. The surgeon used part of the donor's pulmonary arteries and grafted them onto Al's. This required a cold arrest process which means that the body is cooled enough that circulation stops all together. It can only be done for about 15 minutes at a time. This had to be done three times while the pulmonary artery was repaired. This is very dangerous as circulation to the brain and the vital organs is completely stopped but it was necessary to repair properly.

Because the old heart was going to research, it had to be dissected immediately in the OR. So, Allison offered to take a camera back and get a photo of the old heart. Ready...

Here is the old one:

The old heart was a mess - misshapen and swollen and covered in scar tissue. Its pretty unbelievable that the old heart had made it as long as it had. This made it very clear that the transplant was the right choice.

Eventually, the heart was in. Slowly he came off the bypass machine and was pumping on his own. But, after all that he had been through during the surgery, bleeding was bad. It took hours to try and soak up all the excess blood in the chest. Finally the surgeon decided to leave the chest open and leave gauze in the chest cavity to stop the bleeding and then wait a few days to close up.

Finally right about 12 hours after going into surgery, mom and dad got to see their baby. He was a mess after the surgery but all things considered was doing pretty well. The gloves there are ice packs to get his temperature down.

Scary Night

Mom and dad ate some dinner, and saw their Al to say goodnight. He was still very sedated. He needed a little bit of pacemaker help which isn't unusual. Mom and dad kissed him goodnight and went down one level to their sleep room at the hospital. Right as they were getting their bed made to go to sleep, they got a call from the assistant in the CICU that they should come back. Mom and dad got on the elevator and sprinted to the unit.

Everyone was surrounding the bed. Al's blood pressure suddenly had dropped dramatically and he went into a spell of cardiac arrest. A Code Blue was called and the crash cart pulled over and he received 30 seconds of CPR. As we were arriving, the patch covering his open chest was opened to go in and check out the heart. What they discovered - the heart had swollen from all the trauma and was being compressed by the gauze that had been left in. After removing it, his numbers got much better and the bleeding had mostly stopped. It was a huge relief.

For the next several hours, Al stayed teetering on the edge as to whether or not his heart new heart would be able to make it on his own. The surgeon was trying to decide whether to put him on ECMO. It is a machine basically like a heart/ lung bypass used in surgery, but it can be used for a longer period of time in the ICU. Al's heart would start doing worse and his pressure readings would look bad and then as soon as the ECMO was getting set up, he'd get better and the doctor would hold off. Al had a huge crew of people hovering in his room all night. Dr. Max, the surgeon stayed in the room all night focused on the monitor. Often Al would need a blood transfusion. Instead of delivering it by a pump like usual, his surgeon sat by the bed and pushed the blood in by hand with a syringe to try to add the blood at the exact speed necessary. Al kept doing this back and forth all night long. Finally first thing in the morning, the doctors did decide he needed the ECMO machine and got him put on.

The ECMO machine sat on this metal cart. Al had 2 metal tubes going into his chest. His blood would leave him and go into the machine. An oxygenator would add oxygen and the blood would be warmed and then pumped back in, basically working as an artificial heart and an artificial lung so his heart could have a break. He was still on the ventilator at a low rate just to give the lungs exercise while they weren't needed.

Being on this machine is very risky - especially the longer spent on it. Because the blood goes through this machine, it needs to be thinned with Heparin. This creates a significant bleeding risk, especially to the head. There was about a 40% chance of head bleeding which could cause permanent brain damage.

After exactly 2 days, doctors decided to try taking him off and to hope for the best. Fortunately he did okay and after the days of rest, his heart was ready to pick up the slack and start pumping. The right ventricle was still weak for a few days which is fairly normal but he did okay. The next day, his chest was stapled shut.

Slowly all the usual stuff came off as he got more stable. Chest tubes came out. Lines came out as he was on less IV drugs.

The breathing tube came out.
His breathing still wasn't great and he had to go on the Cpap machine for awhile. It was very uncomfortable.

He got off the drugs and started to become more awake. But he was very uncomfortable. Spent about 48 hours with non-stop insomnia and got the shakes. He was having withdrawal from all the morphine he had been on. He started methadone and ativan which helped him to relax and feel much better. He switched from the Cpap to a high flow nasal cannula.

And eventually got stable enough to move back upstairs from the ICU. One of the first new things to try - applesauce.

Happy Birthday

While on the CPCU on the 9th floor, Al turned one! His CA Kalie got him an awesome present. A helicopter. He loved it and played with it for hours. Its a fun toy that makes loud noises.

And now that he was a big boy and finally able to have a normal fat diet (though still no dairy), Grandma Ja made him a special treat. Chocolate birthday pudding! (made to nondairy specifications)

He stayed for a little while longer, getting more stable and weaned to a lower dose of oxygen and to lower doses of meds.

Finally left the hospital after about 2 1/2 weeks which isn't long for his standards. Still wasn't 100% but enough personality shinning through to know that he was the same Al.

He went home on oxygen, ng tube for feeding, and lots and lots of meds.