Saturday, February 15, 2014

Max and the Terrible, Horrible, No Good, Very Bad Day


When we arrived at the hospital early this morning, Max was wearing his scuba mask to get a breathing treatment to try and push his lungs open. Apparently he had had an x-ray that morning and his lungs had looked worse than before, meaning there was a lot of fluid build up and they weren't very strong, especially the left one which is the one that collapsed the other day. Unfortunately, with the way the scuba mask works, it shoves a lot of air into his belly and it makes him vomit. A lot. At one point, he threw up and I had to quickly turn his head to the side to keep him from aspirating his own vomit while Jon found a nurse to help clean out his mask (more on why we couldn't find one in a minute). When we were finally able to see a respiratory therapist, he worked for an hour trying to figure out alternate ways to give Max breathing treatments and he finally found one that seems like it'll help. Everyone would really like to avoid Max having to be re-intubated and his chest x-ray this afternoon showed an improvement in his lungs which is promising.

Getting to the point where his lung seems to be improving was kind of a chore today. Nothing seemed to be working between all the vomiting and the difficulty finding a nurse (again, more on that in a minute) until we finally put Max on his stomach. The doctor told us that that can help because gravity will move the heart forward a little and alleviate some pressure on the lungs and literally give him some breathing room. Initially this worked out well but then Max realized that his face was turned to one side and if he rubbed his face along his blanket, he could pull the ram cannula (his oxygen tube) out of his nose. I don't blame him for wanting to get the tube out of his nose but it was really important for him to leave it in. Plus, he kept trying to lie face down on his blanket which, naturally, scared the bejeezus out of me. We finally got him to settle though and he was able to sleep like that for about an hour before it was time for his next x-ray.

Now to explain the nurse shortage. We always have a nurse assigned to Max but sometimes they have two patients they're watching, particularly on days like today when there were only a few staff members on duty. Max's nurse today had a second patient and her other patient, who was two doors down from us, went into cardiac arrest. They had to call in one of the surgeons who showed up in the CV ICU in his running shorts and pretty much leaped into scrubs at the nurses' station across from our room before doing emergency surgery in the patient's room.

Normally this wouldn't be a big deal for us because obviously, the patient that's coding takes priority. However, Max kept vomiting in his scuba mask and his heart rate was about 20-40 points higher than it normally is and the CV ICU was kind of understaffed today. Our nurse needed to pass Max off to another nurse because she had to focus her efforts on her other patient that went into cardiac arrest but luckily for us, this turned out to be a blessing considering what happened next.

Our new nurse came to fill in for a few hours and we're so thankful that she came when she did. Shortly after she arrived, she was doing her normal checks on Max (temperature, diaper, etc.) and the last thing she was going to do was pull out some excess air from his belly through a tube in his nose. Between the scuba mask and the other breathing treatments, poor Max had a ton of extra air in his stomach which was causing him a lot of discomfort. When she went to pull out the air with a syringe, something that has happened to him many times before without incident, it was like a switch flipped and Max's heart rate shot up from 180 beats per minute (bpm) to 215 bpm. At first we all thought Max's monitor was malfunctioning but we quickly realized it wasn't. Our nurse stayed very calm and collected and grabbed the attending on duty, the respiratory therapist, and a few other people to get in Max's room to help him.

I think this is the most scared Jon and I have been since Max's transplant surgery. After the CV ICU already had one cardiac arrest, we were terrified Max would be next. I felt so helpless as he lay in his bed, crying and gripping on to my finger with a look of pain and fear in his eyes and I couldn't do anything but stand there and hold his tiny hand.

An emergency EKG determined that the cause of the sudden leap in heart rate to be the result of a supraventricular tachycardia, or SVT. An SVT is essentially an electrical impulse that's sent to the heart but rather than the impulse going down the whole side of the heart, it gets stuck in one chamber and essentially keeps cycling around and around the one chamber. Max has pacing wires hooked up to his heart from his transplant surgery and the doctors got a machine that they hooked up to Max's heart and gave him a mini-jolt, basically doing a hard reset of his heart. His heart rate went up to 250 bpm before dropping back to the 180 bpm it had been sitting at for most of the day.

Max was fine, crisis thankfully averted.

The doctor told us that this can happen and this particular organ has a little bit of history with SVT. We knew that right before the surgeon took it out of the donor, the heart had had a 6 beat run of SVT before stopping on its own and it did it again for about 8 beats when they restarted the heart after transplanting it into Max. The doctor also said that this isn't something we need to worry about. Yes, it's scary to watch his heart rate skyrocket in an instant, but if it happens again it's something that can easily be fixed with medication. There's also going to be an adjustment period as Max's body gets used to the new heart and the new heart gets used to Max.

At this point, the doctors are all more concerned with Max's lungs than his heart's terrifying 25-minute run of SVT because he responded immediately to treatment. They all really want to avoid having to re-intubate him and luckily his x-ray this afternoon showed an improvement in his lungs. We're hoping that with his breathing treatments, he'll hopefully continue to improve. He is already getting more vocal and he's coughing more on his own, both of which are great signs that his lungs are getting stronger.

Another positive improvement is with his neck. As Jon mentioned in the last post, the left side of Max's neck was swollen due to a blood clot but thanks to the blood thinners, the swelling has already drastically reduced.

I put out a request for prayers and good thoughts on Facebook earlier and I really want to thank everyone who took a minute to think of Max. Today was really scary for us and it helped to know that we had so many people out there rooting for him.

I know I've been asking for a lot today but if you could, I wanted to ask for prayers for the other patient in the CV ICU that went into cardiac arrest and needed emergency surgery. It was a baby like Max and the family looked exhausted and terrified. Considering how scared we were with Max's situation, I can only imagine the hell that other family went through today.

Thanks for bearing with us on this long update. All three of us are pretty worn out and we're all going to try and get some rest tonight. Thank you again for all the prayers and nice thoughts, they're very encouraging on days like today.

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