Tuesday, February 18, 2014

Smooth Seas Do Not Make Skillful Sailors

After two fairly good days with Mister Max, we had a few more scary moments today that left us feeling utterly exhausted and increasingly scared. We knew it was going to be a difficult ride, but I don't know if anything can quite prepare one for such an uncertain and turbulent future.

This is our theme from here on out. 

Upon arriving at the hospital this morning, we found that Max's final chest tube was removed, which is great seeing as how they generally are not kept in longer than a week for fear of infection (this is the ninth day of that particular tube). Unfortunately, the nurses told us that he had been nearly inconsolable since the removal of the tube despite light sedation. He seemed really uncomfortable and didn't quite look himself. He was getting an echocardiogram, something he usually sits for very well, but his numbers weren't great and he seemed like he needed a break. After trying a few things to comfort him, his oxygen numbers began to quickly de-stat and Max started to lose color in his face, and his eyes began to glaze over. I grabbed our nurse from the adjacent room--she had two patients today--and told her what was going on. She quickly came in and started turning up the oxygen on Max's breathing machine. After the O2 saturation was pumping out 100% and Max's numbers were still dropping, our nurse grabbed nearby doctors who were fortunately making it towards the room for the morning rounds.

Once again, right place right time.

Almost instantly, we had 12 physicians and nurses in the room trying to figure out what was going on. They rushed an x-ray machine in to get a look at Max's chest to see why he couldn't breathe. The RT on duty today rushed to go grab a scuba mask again; even though Max was having difficulty breathing, we knew this was a bad idea and would only set him back further. I voiced my opinion on the matter, but they tried to use the horrible mask, again. Luckily, with my protest and the insist of the attending doctor on duty pointing out how distressed Max was getting while simply trying to put the mask on him, the mask was put aside in favor of a manual bag valve.

We all hate these. I threw them away after this morning. 

Once the x-ray was completed, the doctors immediately noticed that his right lung--the good one--was collapsing like a balloon. When the large chest tube was removed, a decent amount of air entered Max's chest cavity and was putting pressure on he lungs from the outside, a condition known as Pneumothorax, which is simply a collection of air or gas in the space between the lung and the chest wall. Basically, Max had a lot of air where air is never suppose to be.

Obviously, this is not a good situation to find oneself in.

The doctors explained that in order to get this pressure and air out of Max's body, he had to have an emergency procedure to put a chest tube back in near the problem lung. Luckily, this tube is about 1/10th of the diameter of the last one and therefore wouldn't be nearly as uncomfortable for the little man. The room was getting a bit overwhelming and it needed to be sterile, so we decided to try and go for a walk while they preformed the quick procedure. It wasn't doing either of us any good just standing there feeling utterly helpless while they tried to keep oxygen pumping through Max's system.

About 15 minutes later, we returned to the room just after everything was being finished and a post x-ray was being taken to see if the tube was placed properly and if the lung was looking better. Fortunately, Max started to respond immediately and his O2 stats started to climb again. We were able to let out a small breath of relief and hope that we got the stressful situation out of the way for the day.

Our wonderful nurse did a great job at putting off some of Max's tests and labs so that he could have a few hours to just rest and take things easy after such a stressful morning. A surgeon came by shortly after the tube was placed to check it out and to put a couple stitches where the other tube was removed earlier. This was an extra precaution to keep any air from entering the chest cavity in the future and will hopefully keep those wounds a bit more protected.

Other than a couple other minor tests and medical changes and briefly getting out of the hospital for a real person meal, the rest of the day went really well after such a rocky start. We had some good friends from Flagstaff come visit us as well as Max's godparents. We were glad the morning calmed down enough so we could all have a nice moment together.

Emily helping give Max a bath last night

Later in the day, one of Max's main physicians returned after a temporary absence over the last few days. He was briefed on the blood clot in Max's neck and was concerned because there is no logical reason for it to have formed where it did. Even though the swelling is down, an ultrasound showed that the clot is still there, but Max's body has adapted to it and started to reroute blood around it--pretty cool when you think about it. His Doc didn't like the blood thinners Max was placed on, so he changed things around a bit to hopefully get the clot moving, but he said that Max's body will likely have to do most of the grunt-work to get the obstruction removed. Luckily, it is in a vessel that isn't absolutely crucial for blood flow to the brain, so there is no immediate rush to try and surgically remove the clot. They are going to keep a close eye on Mighty Max to make sure that no other clotting issues arise, so hopefully this is a one-time occurrence as a result of the heart transplant or something related.

Also, as of tonight, the chest tube looks to have removed everything it could, so it could be removed as soon as tomorrow. Let's hope for no lung collapses this time...

Even though the start to today was horrible once again, we are still moving forward and Max is making small advances each day despite some major setbacks. Fingers crossed for a better day tomorrow and a continuation of improved health!

Let's also hope Max starts to gain a little weight, he is starting to look a bit like Benjamin Button.

Yeah, time to chunk up, Max!