This is a series of updates from the last 2 days combined into one.
Yesterday, Easton spent a total of 15 hours in the OR. He finally arrived back into his room at 11:15pm last night. The doctors warned us that he would be hooked up to an ECMO machine that has two clear tubes that pull blood out of his body, send it through this machine that filters it and oxygenates the blood, then the second tube puts the new oxygenated blood back into your body.
After sitting in a tiny waiting room for 15 hours, the Surgeon finally came out to discuss what had been done. During the first update call, the nurse mentioned something about Easton having some difficulties with the breathing tube and they had to perform CPR. This was the first thing Dr. E addressed. What had happened was after Easton was incubated, a physician from Ear, Nose, and Throat took a tiny scope down Eastons mouth that would give a better viewing of the valve on the backside of the heart. When the scope was being removed, without anyone consciously knowing, the breathing tube had been moved and was not in place. A few minutes later when Easton went into respiratory distress and all the alarms started buzzing, they figured out what was wrong and he quickly recovered.
Once they opened his chest, it took three hours to actually be able to visualize the heart. There was an abundance amount of scar tissue layering over the heart from the original open heart surgery back in September. After the extensive three hours of cutting through this tissue, it took another hour to two to cut away the muscle around his heart. Since Eastons heart was working three times as hard as a normal heart since he was born, his heart muscle was very very thick, approximately five times thicker than a normal heart. So keep in mind, it took about five hours total of cutting before Dr. E could even begin the valve repair.
On a normal truncal valve, and the posterior end there are four leaflets that open and close which assist with the blood flow going through the valve. One of the several issues with Easton's valve is that his four leaflets which should be skinny and come together in fact did nothing of that sorts. His were very bulky and did not combine. Imagine four balls that come together, but since they are circular they can not trap liquid, the liquid would just flow through there. This is the leakage problem with his truncal valve. Dr. E was able to shave away some of the extra material, and in fact recreate the leaflets. They also took down the central shunt that was placed during his first open heart surgery, and placed a new shunt that connects from the Pulmonary arteries and closed the VSD. Keep in mind, during this 6 hours of "repair," Easton was on a heart lung bypass machine. Typically, when you undergo a heart operation, you are on bypass no more that two hours, so six hours is a large amount of time.
When the operation was done, they took him off of the bypass and he had a few complications. First off, his heart function was low, and his nears numbers look terrible. These tell you how well the body is being oxygenated. Also, the chest tube from the left side of the heart was loosing a good amount of blood. Dr. E decided it was best to put Easton on ECMO, a machine that is considered life support. This machine does all the work of the heart. He was put on this to give his heart a few days of rest after the very traumatic surgery. Also, some of his labs post surgery showed that his heart was under a great amount of stress, so giving his heart a chance to rest just made since.
Throughout the day, the bleeding has continued to get better and is almost in the "normal" range. The major issue today is his comfort level. They have had a difficult time keeping Easton completely sedated. It actually is very difficult to watch, occasionally Easton will move around and I can see in his face he is crying. He clamps down and his blood pressures go crazy. The doctors say he is having this issue since Easton has been in the hospital who whole life and has always been on pain killers, he has build up a tolerance for them. In the last hour, he looks MUCH more comfortable and I have not seen him twitch once. The next step is to start Heparin here soon, which is a blood thinner. When you are on ECMO, you need to be on a blood thinner to prevent clotting of the tubes.
Little bit of a change of plan for today now. Since the echo showed that Eastons heart still needs a tad bit more rest, they decided to hold off on removing the packing until tomorrow. Since there is no pertinent hurry to remove it, the doctors would just rather wait.
Overnight the bleeding from Eason's left chest tube has almost subsided, and any blood that is draining now is a very light watery blood which is what the doctors like to see! Yesterday evening Easton was moving around more frequently and was not looking comfortable, so they decided to give him a muscle relaxer. The problem with him moving is the two cannula's that are taking blood out and back into his body which are very critical to Easton need to be very secured. The fear was that accidentally one of them would come loose with the movement.
This morning they started Easton on Epinephrine which is a medication that helps the heart contract. So far he has responded fabulously to this! His systolic and diastolic blood pressures are now starting to have a little higher of gap between them which is great, it means in a sense his heart is beginning to "wake up." After starting the medication, they did an echo on him. Overall, the results were great. The echo showed that in fact, Eastons heart looks ten times better than it did right out of the OR. His ventricles are contracting, but not quite "snappy" enough if that makes sense. From what the nurse explained to me this morning, when you are on bypass for as long as Easton was, your heart becomes very stiff. Since his ventricles are still a tad tight, it means he just needs a little bit more rest. We are still waiting on the final results, but based on what the echo showed they will most likely keep him on ECMO for just another day or so.
Dr. Canter (the head of the cardiology dept.) just came in and said he is very pleased with how E is doing. Currently his systolic and diastolic blood pressures have a difference of 10ish. So for example, currently his blood pressure is 67/55. That is a great improvement from right after surgery when the difference in the two numbers was only 3-5. Dr. Canter said he would like to see the numbers have a difference of 20, then we will be in fantastic shape.
Brittney and Easton will be living in the hospital for quite some time. Anyone that would like to help can make any size donation to the paypal of firstname.lastname@example.org
. Please put Easton Rush in the subject box. I will transfer all funds to Brittney's debit card.
Thanks for all the prayers and support