Survies to Ponder

I've had two extensive phone surveys within the last 4 months about our stay and decision to chose PCMC, which have gotten me to pondering.
And holy smokes did I almost start to cry tonight at the end of the 25 minute chat.

Most of the time I think I'm healed, over all the trauma, but then I get sudden flashes of hard moments in the hospital.
Or in tonight's case a very peaceful memory...



... It was a hard first few days after Eli's (age 4.5 months) 2nd surgery, the Glenn Shunt.  It's kind of shocking to see my child's beautiful face double in size because of rerouted blood flow, and the pressures not yet stabilized.  And he's in pain, even with medication, because the pressure makes a "terrible, worse than a migraine head ache," they say.
He's just a baby.  My son, that I can't hold and comfort.

This specific day is hard.  Typically the nurses are out of this world amazing, but Eli's nurse on this particular day was... well, we know she doesn't really want to be there.  Close to retiring, and we can tell.  Matt and I spend an enormous amount of energy that day, doing our best to comfort Eli, help him eat, help him be comfortable, and we need a break.  It's shift change anyway, so perfect time to leave (since we must) and grab some food.

We are fed, we are rested, and we are ready to check-in on Eli and say goodnight.

I go down the hall, at first noticing the peace and quiet.  Soft dim light is emitting from the room, and we peek inside:  a small woman is sitting at her table going over notes, the room looks organized, and Eli is asleep.  I notice that he has been sponge bathed, he's in new pjs, and he's resting on his side (compared the back which he's been on all day).  Peace fills my insides, and I sit next to Eli's bed and just watch him...



... This memory is why I'm an emotional wreck tonight.  Wow it's a lot of tears!







  

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.

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

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

One Year Later

I have been thinking a lot about last year. Wow, what a time. Eli was born, had his first open heart surgery (the PA band), came home, and started the 6 weeks of recovery. When I look at the photos I get really, really weepy. I think I am feeling part heart break, part relief. Heart break because Eli was so small and so sick/in pain. Relief because we have made it this far, and this time last year I had no idea where we'd be at this point... 

Eli's birthday. 

He was brought to us after being seen in the NICU and before being transported to PICU

His bed.

Where he chilled, was held, and lived for 4 days before surgery.

Surgery day.

The surgeon (amazing!) coming to check on him.

Eli had a really, really hard time that night. He wasn't breathing well on his own so he couldn't have the full dose of pain medicine. Probably the worst night of my life.

In recovery! 

But still in lots of pain. We were fortunate enough to be able to leave 4 days after the surgery. So 8 days total at the hospital.

Hiccups.

Hiccups are the worst! The worst. Eli got them all the time. Just killed him. He got them a lot because he wasn't able to burp well, because his chest hurt. The only thing we could do was let him cry it out. This happened 5 or 6 times a day. 

Newborn nights.

Newborn nights are always hard. But his seemed harder. He liked the lights on, and did not want to be in the bassinet. Liked wide open spaces. Which fits to what he was used to in the hospital. 

Home recovery.

Recovery is typically 6 weeks long. In Eli's case he needed to come home with oxygen. Some need it up to 3 months afterward, but Eli only needed it for two weeks. 

This is where he chilled most of the time:

Oxygen gone, thankfully! 

Oxygen really does get in the way. 

And this is what is chest looked like 2 weeks after surgery:

I could go on and on. If you have any question feel free to email me at shandud@gmail.com

But for now, THE END.