Recap

A brief-as-I-can-make-it recap of the complications over the past 2 days:

The goal of the Comprehensive Stage II surgery: Remove the bands and stents placed in the Stage I procedure, disconnect the superior vena cavas (she has 2 instead of the usual 1) from the right atrium and connect them directly to the pulmonary arteries, disconnect the main pulmonary trunk from the pulmonary arteries and graft it to the aorta while also repairing Haley's narrowed aorta and making it wider, and removing the well between the left and right atria. All of this is done while Haley is on a heart & lung machine, and while being on a heart and lung machine they cool the body to 68 degrees Fahrenheit. To get someone off a heart and lung machine, they must warm the body up gradually. Alright, so the complication during surgery was that after they did the heart repair, they performed an angiogram to make sure that the blood was flowing correctly with it's new pathway. Unfortunately Haley's was not due to the fact that her right pulmonary artery had a narrowing where that band had been placed, so blood was not getting to her right lung properly. Also, when they tried to wean her off the heart and lung machine she didn't tolerate it. So they had to put her back on the heart and lung machine, cool her back down, and then go in and widen her right pulmonary artery with a graft. Then they had to warm her back up and wean her back off the machine, and thank Heavens they were successful that time.

Overnight Haley-bug seemed to be having her smoothest recovery so far, but it was all a disguise. Her blood pressure had been having a few issues overnight along with her oxygenation. But her chest tube wasn't draining much so they didn't think she was having any trouble with bleeding or losing fluid into her chest. But since they couldn't get it fixed, in the morning they decided to do a chest X-ray and with that they saw that her left chest cavity was filled with fluid and collapsing her left lung. They decided to place a chest drainage tube in that side thinking it had walled itself off from the middle chest tube - this is a routine procedure that should take 10-20 minutes. Kelly called to tell us they were going to do this and she would text me when it was over. 15 minutes later she called back to tell us that Haley was coding and had gone into cardiac arrest, we immediately ran to the hospital for what I hope was the scariest morning of our lives. When we got there they were doing CPR and after about 20 minutes of chest compressions and lots of blood transfusions her heart beat returned without having to be shocked, paced etc. They thought that perhaps part of her heart repair had come undone/failed so Dr. Galantowicz did an emergency surgery in her ICU room, reopening her chest and inspecting the repair. It turned out the repair was fine but that the drain had been clogged by some tissue and so all that fluid had accumulated. He decided to leave her chest open for the time being so that if they would need access again it would be faster/easier. Dr. G was very optimistic and encouraging that she had now been through the worst and would hopefully do better from here on out.

After the arrest, it is routine to place an EEG (kind of like an EKG but it goes on your head and monitors your brain) to monitor for seizures. While Haley is on the ventilator she is paralyzed with a drug and they want to make sure that she's not having seizures that they just can't see. After they placed the EEG and had monitored for about 2 hours, it didn't show any seizures but it also showed very depressed brain function. The neurologist who came to spoke with us must not have been used to dealing with people because she kept hemming and hawing around in a way that we all interpreted as trying to avoid delivering bad news. But once we finally got her to spit it out it was really the fact that they just can't know yet. That though her brain function is low now, she has tons of swelling, a low body temperature, and babies brains are amazing and can bounce back from incredible insult. But it will be anywhere from 24-72 hours before they can decide for sure what her brain is going to do. They would also like to get a CT tomorrow to see if there are any obvious brain injuries. We asked them to give us updates whenever possible, and they did call once today to say that while her brain function is still very depressed, it was ever so slightly improved from earlier in the day. We will take whatever we can get and be grateful for it, at least it's a baby step in the right direction. She then said she wouldn't call back till tomorrow, so no news after that.

This evening, with the massive amount of swelling in the upper half of Haley's body her lungs are also very swollen and 'edematous' as well. If you can imagine a sponge: it is very squishy and expandable when dry, but when soaked with water and doesn't move much at all. Since Haley's lungs are soaked, the regular ventilator wasn't doing an adequate job of oxygenating her anymore because it just couldn't force enough air into her lungs with a normal breathing pattern. (There is nothing they can do really to get all this excess fluid out of her body because it is a stress response of the body to hold onto water - we just have to wait for her to urinate it out on her own once her body feels less stressed.) So they have had to put her on an oscillator which is a ventilator that gives continuous tiny breaths and never lets the lungs collapse/empty out really. When they put her on that, her color immediately improved as did her blood gas. We hope and pray that she continues to do well on it.

There are of course other more minor complications as well; troubles managing her blood pressure, oxygenation levels, getting her to urinate, high blood sugar, etc that they are managing one blood gas analysis at a time. But I wanted to give you more explanation for the terror that we've been living through and the scary posts that I've had to share with you.

Please pray for our Haley-bug. We are consoled only by the fact that the last thing she remembers is falling asleep in our arms, peacefully and with her binky. We are praying constantly that we get to have her, hold her, kiss her, and never put her down again. She is the light of our lives. As terrible as the hospital stays have been, these have still been the best 5 months of our lives.