Saying Thousands Words

Eli's hospital visit for the Fontan Procedure was just a week long (Aug 17, 2011 thru Aug 23, 2011), but there was a whole bunch going on.
These pictures give a great recap of all the events. If you have specific questions about a picture please feel free to contact me at shandud@gmail.com

 

6 Weeks Later

Can y'all believe it? It has been six weeks--today--that Eli had the Fontan Procedure! Wow! He is doing awesome. Too awesome, actually. It's been difficult to keep him from running around and injuring himself during this time of recovery.

See, a heart surgery patient needs to be careful the first 6 weeks after surgery (if the sternum was cut open) so that the bone can set right and heal right. "Careful" is not in this 2 years vocabulary... especially when he is the middle child of 3 boys, and loves to wrestle!

I can now breath easier. I no longer have to be nervous if Isaac (5 year old brother) runs into Eli, I no longer have to be extra careful when holding him underneath the arms, and I no long have to the stop crazy-fun play when Daddy comes home and all the boys want to dog-pile!

...........

Eli is doing so well.

He started to refuse to wear the oxygen a few days after he come home. I was a bit nervous about that but was able to talk to the doctor on the phone before our scheduled check-up appointment, and he said he'd be fine if he looks fine. And Eli looked great!

The day of his check-up appointment I was telling Husband Matt that Eli looks so good, and so pink! I wondered out loud if his oxygen saturation were in the high 80s (when he left the hospital two week before, his levels at room air were at 82).

Well low and behold, when Eli was hooked up he was at 95! That's right, 95!! He hadn't been in the 90s on his own since he was born. And he'd gained his weight lost in the hospital visit, so he was back up to 31 pounds. 

Life is truly wonderful after the Fontan Procedure. I always said that Eli was just Eli, and his mood could flip-flop to happy and sad within seconds. But he doesn't do that anymore. He runs without too much sweat, he plays without too much whine, and he's happy without too much upset screeching.  

Life is good. Really good. 

Here is Eli just 1 week and 2 days after surgery.

Oh how I love to see his pink, pink lips!

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%.)