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! 

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

 

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