An Eli Update

It's been a while since we've had one of these, huh? Well, it's been a while since we've been to the cardiologist. And guess what? That has changed!

Eli has had two cardiologist appointments within the last two weeks.

Here's the deal:

he weighs 30 pounds, and is 33 inches tall. He is "a square," as one nurse put it.

AND...

... Eli will probably be getting his (hopefully) last surgery at the end of the summer. The Fontan Procedure, to be more precise. We will come back from Alabama August 6th, have a cardio cath done on August 8th in Boise, and then the following week or two have the surgery down at Primary Children's Medical Center in Salt Lake City.

There is a possibility that after they do the cardio cath, look at the heart thoroughly and repair possible leaks, that we will not be doing the surgery. There are two schools of thought on doing the Fontan Procedure. Some doctors believe it needs to be done as soon as the child is two, others believe that it can wait till as long as 4 years old. Our doctor and surgeon are more on board with waiting till the child looks like he/she needs it done (up till 4 years old).

Because Eli shows signs of cyanosis (turning blue/gray color), is pretty sweaty and beginning to breathe hard during play, they think he is ready. Also his mitral valve is leaky. (The valve between the left atrium and ventricle, the pink blood side.) Doing the surgery would greatly take the stress off of this valve--for it is dealing with twice the amount of blood than typical mitral valves.

And incase you don't remember what Eli has, I'll tell you! Tricuspid Atresia. His right valve did not form, instead a wall of tissue. So he has no right ventricle, and pretty much just has two chambers. The two atriums are connected, and all the blood goes down into the left ventricle. His blood is mixed. After this last surgery the blood will no longer be mixed, the heart will only be pumping pink blood, and all the blue blood is routed to the pulmonary artery which goes to the lungs. Crazy, eh? (Creating valves and ventricles is still God's thing. We humans can only reroute!)

................

Recap of today:

Eli wasn't allowed to eat or drink anything 8 hours before his sedated heart echo (ultrasound of the heart). Yes, Eli was crabby. He was very disappointed in my bag, there were no treats, no drinks, not even old crushed bags of Goldfish. (I emptied my bag out before we left, and there were like 3 bags of old crushed Goldfish.)

They didn't put him all the way under, which meant no IV! HOORAY! (IVs, oh how we hate thee!) Instead they gave him a nasty medicine which caused him to come drowsy, relaxed, and unable to form coherent thoughts. I held him the whole time while they did the heart echo, took blood pressure, and blood saturation levels. They got a good thirty minutes of this before he started to started to wiggle. We needed another 10 minutes to get all the looks at the heart that they needed. These last ten me and Matt were holding arms, and nurses were blowing bubbles and showing movies off of their smart phones.

Eli was pretty wobbly and cranky after he fully came to. This 2 year old was a handful till naptime. Wanted food, didn't want food. Wanted drinks, didn't want drinks. Wanted to walk, didn't want to walk.

At this moment (after naptime) he is enjoying a movie, juice, and Goldfish!

Sedated Heart Echo, etc.

Last week Eli had a sedated heart echo and check up at Primary Children's Medical Center in Salt Lake City. Oh, what a stressful time! Eli had woken up Monday morning with fever, but we had to leave Monday and stay the night in Salt Lake City for the appointment on Tuesday. Taking care of a sick baby on the road... I don't recommend that. Thank goodness my mother and sister were able to come with me. (Matt, my husband, stayed home with our 3 year old and finished packing the house. Oh yeah, we moved last week. Stress.) 

That night in the hotel my mom and I got a combined total of 2 hours of sleep. Eli could not rest because he did not feel well. But up and awake we were at 6am to give Eli his last bottle before the sedated heart echo and to be at the hospital by 7:15am. 

Eli has had one sedated heart echo before. But being so young (3 months old) he was able to take the sedation medicine orally. Not this time! His sedation medicine has to come through an IV.  Understand that he already did not feel well because of fever and was very cranky because of lack of sleep. So when the IV team came in and started touching him, he let them know he was not a happy camper. It took three pokes till they found a good vain. Lots of crying, lots of kicking, and a very stressed me. They finally got a good stick and off to sedation echo at 8:30am. 

Eli was so tired he only took half the sedation medicine alloted through the IV before he conked out! The echo began and Mom saw for the first time what Eli's heart looks like. She calls it an "open mouth bass," and kept wondering what we were looking at. It is pretty weird picture: the two chambers on top are connected, making one big chamber, then there is one big ventricle on the left side. And that is Eli's heart. 

Afterward Eli went to recovery for an hour and a bit to let the sedation medicine ware off. Wondering what an echo is? An echo is an ultrasound of the heart. They like to do this every once in a while to see how the heart is functioning in real time... gives much more info than an x-ray. Children Eli's age are sedated because they need to be very still for 45 min or longer. Make sense?

Met with the doctor after Eli fully recovered. There are concerns, one being the narrowing of the pulmonary artery on the right side where the stitching from the surgery took place. This can be typical in those who have had Glenn Shunts procedures. The worry is that the narrowing will cause a low blood saturation. Eli is already at 80 to 85 percent, so he does not need to go any lower. If this becomes a bigger deal before his next surgery--which is next year--then they will need to fix it before then. That is done through a cardio cath. They will run a line up his groin artery to his heart then expand a balloon to open the narrow pulmonary artery. 

AND I just got a call from Eli's cardiologist at Primary Children's saying that his EKG from last week shows some issues. Great. So tomorrow we are meeting a new cardiologist in Boise (because we moved) and are having another EKG done. Now an EKG is just stickers on the chest and measurements taken that way... not to big of a deal. Goodness, I hope everything is okay. It is okay that I cry a little, right?