Preparing For A Surgery

We knew before Eli was born that he had a heart defect, and that a surgery would happen within his first few days of life (April 2009).  This we prepared for by ____ , and appreciated it because ___ :

• Touring the hospital(s), many times. He was born at University of Utah, and had his surgery(s) at Primary Childrens Medical Center. 
• It was great to see each room, and understand each phase of the schedule. More information, the better!
• Setting up a place to stay during the surgeries. We lived 3 hours away from PCMC, and didn't have any close family by the hospital. 
• We learned quickly how awesome the Ronald McDonald House was... It felt comfortable, and a place to go to a relax. Food always available, help always near.
• Getting family members to stay with us (me and my husband), for the first few days before and after the surgery.  
• It was really nice to have at least one of our parents near, so that we could--in good conscious--take a break from the hospital room. Those breaks really helped us recharge our batteries. 
• Buying some new, cute clothing. 
• This may seem weird, but it totally helped me out... I just gave birth to a baby who I couldn't hold or cuddle, and it was sad. Having new clothes, which were comfy but stylish, helped me feel in control and put together.

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Eli's next surgery was when he was four months old (August 2009). Preparing for this one was pretty much the same as before. Though I had tried to get Eli to be a pacifier taker, it didn't happen. If that would have worked out, things would have been a little bit easier. (Self soothing at 4 months old, and all.)

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Eli's last surgery was when he was 2 and a bit years old (August 2011). This one I had been preparing for since his previous surgery. It was hard to imagine a 2 year old sitting peacefully in a hospital bed, being okay with chaos and new people all around. This we prepared for by ____, and appreciated it because ___:

• Purposefully giving him a blanket to be attached to. 
• Since he was 18 months old he had the same blanket to sleep with every night. This blanket became a favorite, and we definitely took it to the hospital with us. It never left his side, and it helped him feel in control when things were hard.
• Purposefully did not start potty training.  
• Right before he turned 2 years old we found out that he was going to have his next surgery 4 or 5 months later. I did not start potty training so that he wouldn't be confused during and after the surgery. 
• Purposefully consistent with his diet. 
• I tired to keep basic favorite foods that Eli loved always present. Mac-n-cheese, yogurt, cottage cheese, mashed potatoes, Cheerios, Gold Fish, grilled cheese, pancakes. These were a staples, on purpose. After surgery Eli he didn't want to eat too much, but needed to in order to show progress and self sustainment. After lots of tries we were able to get him to eat Gold Fish and cottage cheese... and that's pretty much all he ate for days afterward. 
• Asking my mother to stay with us for the whole hospital visit. 
• By this surgery we had three kids, and needed Matt's parents to look after our two other boys (one older than Eli, and one younger). We asked my mom, in advance, to please stay with us in Salt Lake to be our helper. So grateful we did! It pretty much worked out that me or Matt took the night and morning shifts, and my mom took the afternoon and evening. It was a 3 person rotation, like this: I stayed with Eli at night, Matt would come early in the morning to relieve me, then my mom would come by at 10 or 11. I think no one got too overwhelmed, and Eli always had someone near that he trusted. 
• And of course, cute clothes.
• By this surgery I knew having an outfit that I felt good in helped me out so much. Probably sounds way superficial, but it's true. And important enough for me to put it down twice in this post! 

Save the Date!

Eli's surgery--the Fontan Procedure--has been scheduled! August 17th... 6 weeks away. AHH!

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!)

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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!

Change of Plans

Eli will not be having the Fontan surgery in May. Because he is doing so well, the surgeon wants to wait till he is bigger so that an adult size... something... can be used. Not sure when the surgery will be. He check up appointment will be in May, and we will go from there. I know he needs a cardiac catheterization done after that. Probably sometime in the summer. If he continues to gain weight and have higher oxygen saturation levels, then they may wait till he is even three years of age. 

Not sure how I feel. Watching him struggle and get tired after long play is hard. He's sweaty, blue-ish tint. I just want him to feel well and be able to keep up with his brothers. But what is best, is best. I'm just grateful we have the modern medicine to take care of him!