Made It!

Two weeks ago today Eli had his Fontan. He made it! And is recovering wonderfully. Just a one week hospital stay! Hooray!

We moved into a new apartment and the internet connection is not set up. As soon as it is I promise to post pictures and go into more detail. Thanks to all who have kept this lil man in their thoughts and prayers... We so appreciate all the support.

Picture Perfect

April 2009

Eli about a week old.

A few days after surgery number 1 (PA band) and on the recovery floor.

August 2011

Eli 2 and a bit years old.

A few days after surgery number 3 (Fontan Procedure) and on the recovery floor.

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It's midnight, I'm in the hospital room with Eli, and I just have ton on my mind. Enjoy the randomness:

Eli is doing wonderfully. Staying in his bed and not trying to run out is really helping his recovery. Today he got his big chest tube out, along with the pacing wires. The day before the extra IV in his foot, the urine catheter , and the two arterial lines (neck and chest) were removed. He still has the neck IV on his right side in and two small chest tubes... I think that is it! He'll have oxygen on the whole time we are here and I'm not sure if we'll go home with oxygen or not.

See even though this is his last (hopefully) surgery, and they did separate the blood, a small opening was left in the conduit--a fenestration--to help his body adjust to the new plumbing. This is especially helpful in high altitudes. If this fenestration does not close on its own in a year or two he'll have another cardio cath to close it. What all this means is that he still dips down into the 80s, and his oxygen saturation will probably level out to low 90s. Still tons better than 75 to 80 which he was at before this surgery.

We may come home soon, like Sunday, but I'm not sure. They need to make sure the draining from the chest levels out. It started to dry up yesterday and this morning but once we got onto recovery floor his chest started to drain tons... so we were told Sunday, but we'll see how his body levels out.

Really the only hard thing we are dealing with right now is the cough that Eli has. When a person's chest is opened the lungs are exposed, the lungs in turn create mucus to protect themselves, which of course causes that person to cough. He hurts when he coughs and get scared. We support him in the sitting position while he tries to clear his airways, and he looks at us with big eyes which seem to scream "What is happening to me?!" He sweats a lot during these episodes... I mean A LOT! Soaks through pillow coverings and sheets. He's on good medication though and once these episodes are over is able to catch a few hours sleep.

This hospital stay has been a lot like the others. Have had a lot of the same nurses, but some new ones too. I love these nurses. They become family during the 12 hour shifts. Jill was my favorite for this stay, but I did spend the most time with her out of any of the others. This is new: my mom is here for the long haul, her first time being at the hospital for the whole visit. (She usually takes Isaac back to Rexburg, but since we live in Boise now Matt's parents have the two other boys.) It's been nice to have her around. She's great with Eli and is a wonderful blessing to me and Matt. Each of us three take shifts and turns, so I hope no one is getting too overwhelmed with the hospital.

Eli misses his brothers. We looked through family pictures tonight and the only name he said was "Isaac." I don't think he has forgiven us for bringing him here. There has been one slight smile, but I think that was more for the "Cars Toon Mater Tall Tales" show than for us. I hope he will understand on day... or just forget! Please, please forget! It hasn't helped that he has had some traumatic experiences with needles and IVs. He gets stuck with a needle 4 or 5 times before one is able to get a stick for an IV or blood draw. For the cardio cath last week (in Boise) we counted over 15 sticks that they tried before getting a good IV. (Eli was unconscious and asleep during all those pokes though.)

Well I may as well try to get in a few minutes sleep. To be honest it doesn't look promising, but I'll try!

A Quick Eli Update

Just wanted to let everyone know what's going on with Eli...

He's pink! Pink I tell you. Pink!

(Shannon will post a full blown post later if anyone is wanting more detail). The procedure went quite well. We got to see him around 2pm and he was sedated and asleep in the bed. His sats (with a little assistance from oxygen) were at 97%! Holy smokes. Amazing.

We were told that when he came to he tried to jump up and out of the bed and run home. Crazy boy. I totally believe it too. The staff has been amazed at his strength.

Simply put - he is doing amazing. The first 12-24 hours are the critical timeframe and they are keeping him sedated during this time. We welcome the drugs. :-) He is well and we are well. We'll keep you posted later...

-Matt

Save the Date!

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

Bum-age

Eli is our chunky monkey. He weighs just a few pounds less than his brother (who is 2 yrs and 7 months older). We think Isaac is 38 pounds, and Eli is more along the lines of 33 to 35 pounds. This is pretty amazing considering Eli's heart condition.

Take a peak at their bums, and be amazed!

Weight comes with disadvantages though. His coloring can quickly take a turn for the worst when upset, and he is starting to look "blue" most of the time. Though it is really noticeable in pictures. Can you tell his coloring is off? (Remember his oxygen saturation is 78 to 84%.)

First Teeth Scare

This story starts out with a very worried mother, but all turns out well in the end:

One of my greatest worries with having a child with a heart condition is he/she getting a mouth problem. Oral hygiene and heart health are very much related.

Two weeks ago Eli took a big fall, and the inside of his mouth was a scarpped up. It looked like it was healing well, so I didn't worry too much.

We came to Alabama a week later, and for the first few days of the visit Eli didn't eat very much. He was crabby and started running a fever. I took a quick look in his mouth one afternoon and to my horror saw his gumline inflamed and red. I had all these horrible thoughts come rushing into my mind: "He's has an ifection!" and "We are going to be in the hospital for day!" and "We don't know anybody around here, how are we going to know what to do?!"

My mom said that she knew a dentist in town who would take a look. Phew! I was grateful that he said he'd take a quick peak to help us know what to do. (Oh, did I mention this is at 4:30 in the afternoon on a Friday?!) While getting things quickly together I started to cry. Beinging in a new area, plus worry of this little 2 year old's health, took it's tool on my very tired mind.

The cute southern drawled dentist opened his office just for us, and sat down and took a look. He seemed concered at first, but with some further looks he relaxed. "Gums do this when children are teething. His fall and this gumline are not connected." Wave after wave after wave of relief flooded my body.

Two hours after that visit Eli's fever broke and he started eating again. Isn't that the way it always goes?

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!