A Routine Cardio Appointment Ends in Hospital Admission.

I’ll start off saying that everything is okay now and it was not life threatening just to ease some minds before I get into all the details.

Today at 11AM Evan had a routine follow up appointment with the cardiologist in Kalamazoo. I had to attend an all day training at work so Sarah and my mom took Evan to the appointment. Dr. Dommer wanted to do an echo to look at his heart function because when we were discharged from U of M they stated that his heart function was ‘moderately diminished’ compared to before the surgery and she wanted to check up on it. Her analysis after looking at the echo was that it was only ‘mildly diminished.’ If I recall correctly when we had the echo at U of M he was not back on all his heart meds so I would expect his heart function to be more diminished. While looking at the images of his heart Dr. Dommer noticed that there appeared to be some fluid buildup on his chest but she couldn’t tell for sure with an echo. She sent Sarah, my mom, and Evan downstairs for a quick chest x-ray. It was at this time that I started receiving texts about what was going on. The x-ray showed a sizable amount of fluid on Evan’s left lung. When we were discharged from Ann Arbor Evan had a pleural effusion (fluid) on his left lung but we expected that it would have been gone by now. Dr. Dommer said that Evan needed to be admitted and a chest tube placed to get rid of the fluid, he was put on oxygen to help evaporate some of the fluid on his lungs and to help his oxygen saturation which was in the high 60’s (75-80 is normal for Evan) We could be admitted here and have the chest tube placed or we could be admitted here and Evan transported to Ann Arbor. Sarah and I decided that we would prefer for him to be transported to Ann Arbor. I’ll say again as I have in other posts, it’s not that we dislike or distrust Bronson, it’s just that we want to be in Ann Arbor in the event that something unexpected occurs, they deal with these heart babies all day every day and if Evan “spirals out of control,” I want to be at Mott… Period. We’re also much more comfortable at Mott, we were there for 6 weeks and know many of the doctors and nurses.

Well wouldn’t you know it… Mott did not have any beds available to accept Evan! WHAT!? You built a $754 million hospital, expanded the rooms substantially, and you don’t have any beds? Here’s the truth. They have beds, they don’t have enough staff to open all of the rooms. The PCTU currently has 17 beds open but 31 beds total. The general floor for heart kids has around a dozen unoccupied rooms. They are currently working hard to increase staff but I think they are at a bottleneck of having the staff and time to train all of these people (sound familiar to anyone?). It takes 3+ months to train and not every single person is a trainer. It takes time, I understand, but the hospital wasn’t built overnight. It’s 5+ years in the making…. get on the ball. 🙂

We didn’t end up getting transferred. We were admitted to Bronson and moved to the ICU. At about 4:30pm the doctors came in and put in his chest tube. We were able to stay in the room and watch the whole thing. Many parents would not be able to handle it but Sarah and I are big science nerds and really enjoy knowing as much as we can and seeing everything that goes on. We even asked Dr. Hirsch if they recorded the heart surgeries because we would have liked to see it. (They don’t record them) Within 20 minutes of placing the tube 120mL had drained out of his chest, since then there has only been another 10mL.

You must be wondering, what is this “fluid” and where did it come from? The fluid is called chyle (pronounced like the name Kyle) and it’s a milky red substance consisting of lymph and emulsified fats. Chyle is a normal fluid that is produced in the small intestine during the digestion of fatty foods and is transported by the lymphatic system. Because of the stress of surgery, damage to the lymphatic system,  and the change in pressure within Evan’s vessels the chyle can diffuse through the permeable vessels and accumulate in the chest cavity. The goal during his hospital stay is to 1) reduce the excess fluids quickly via the chest tube and 2) reduce the amount of chyle being produced and transported through the lymphatic system so that it has a chance to heal/rebound while Evan’s pressures settle out. The second part is done by changing his diet to something with much lower fat content and higher fat absorption. This special formula is called Enfaport. When we asked Dr. Dommer how long we should expect for him to be in the hospital she was very frank with us, as she always is, “It varies a lot, it could be a few days or it could be as long as six weeks.” Six weeks!? Let’s hope it doesn’t take that long.

Evan also developed the worst diaper rash he’s had so far. He’s got a very tender butt. It’s so strange how quickly it popped up, yesterday it was just a little red and today it’s very inflamed, almost to the point of bleeding. Luckily, we’re in the hospital and they have some super duper butt cream that they mix up special. The base cream used? Triamcinolone cream… that’s right Pfizer friends, be proud.