Days 17, 18, 19, & 20 Post Op Fontan (May 4, 5, 6, & 7)

Saturday, May 4, 2013:  Eli's wound vac dressing was changed about 1:30pm.  This was the first time I'd seen it since surgery day on Thursday.  I was absolutely shocked to see how well it was already starting to heal.  On Thursday I could see sternal wires and on Saturday they were already covered up!  The tissue was red and healthy looking.  The hospitalist, RN, and wound care team in the room with us were pleased with his progress.  Because he was healing so well they decided to change it again on Sunday.  Originally they thought they'd change the dressing every other day, but he was healing so quickly they felt it was necessary to do it every day.

Bryan and Zachary got to the hospital as the dressing change was starting.  When it was done I called them and they came in the room to help with Eli's bath.  Eli was still pretty loopy because of the sedation (it doesn't make him sleepy, just relaxed and he won't remember what happened).  It was the perfect time to bathe the smelly little critter.  He liked it and also got a bed change.  As he fully woke up, he must have liked having the four of us together in his room.  I thought Zachary and I would leave to do something fun together, but he wanted to stay and watch movies with Eli. 

Eli trying to fit his hand into my bracelet (it's his hospital bracelet that Bryan & I each wear while he's an inpatient)

Pablo (character from The Backyardigans) that Eli is attached to.  Pablo has been through everything with Eli this admission (two OR visits, PICC line placement, chest tubes, therapies, wagon rides, sleepless nights, etc)

Happy boy with a french fry from his daddy.

Eli being silly

We hung out until the evening when Eli was moved from the PICU to the third floor.  Zachary was fascinated with Eli's rolling crib and the fact it fit on an elevator.

After we helped get Daddy & Eli settled in, Z & I headed south to Greenwood.  He decided he wanted Denny's for supper.  In the parking lot he said he just loved their pizza and goldfish crackers.  That's exactly what he ordered and ate.  Isn't the pizza and goldfish crackers why we all go to Denny's?

Once we got to Ashley's house we did a few chores (I had laundry to do as well as some bottles & pacifiers to wash) and got ready for bed.  He had decided that we were going to the Children's Museum on Sunday, even though he'd been there two weeks ago with my sister.  It was wonderful to snuggle him to sleep.  He fell asleep on my shoulder and holding my hand.  I was physically and emotionally exhausted but tried to stay awake as long as I could so I could just feel his hand in mine.

Sunday, May 5, 2013:  We packed up & headed to the museum in the late morning.  When we got there, we bought a membership.  By the time the four of us go two and a half times, it's paid for.  Have you met my son with his dino fascination?  We'll be there many more times in the course of a year!

Practicing our dino roars and stomps before we left Ashley's house

The best way to start any day

The dinos were our first stop.  After that we saw the trains, the blown glass exhibit and play area, Hot Wheels display, Egyptian display, and the gecko area. 

Our young paleontologist asking questions at the dinosaur exhibit.

Climbing like a gecko

 
Bryan was on his way by then and we left the geckos to meet him at the entrance with our new membership card.  Zachary had to take Bryan back to the dinosaur area, the blown glass area, then to the geckos.  Then he wanted to see the science area and he played there for a long time.  The museum was closing soon and to get him out we told him if he wanted the gift shop we had to leave then so it wouldn't close before we got there.  He picked out a pair of dinosaur chopsticks for Eli to complement the ones he chose for himself when he visited with my sister.  For himself, he chose a small stuffed dino that's similar to the one he got Eli last time.

Mommy & Daddy with their blue eyed boy after a fun day at the museum

We came back to the hospital and after a brief visit, Bryan and Zachary left with Bryan's parents who had sat with Eli so Bryan could join us at the museum.  By the four of them leaving together, I got to keep the van.  Bryan was returning to work on Monday so now I have my own transportation up here if I need it.  Eli & I spent the evening trying to unpack into our new room (our fourth this admission!) and settle in to just be the two of us for a long time.

Monday, May 6, 2013:  Eli was NPO (nothing by mouth) at 6am.  His wound change was scheduled for noonish but it was able to happen a little earlier.  Again, he did well with the sedation, but since he's been sedated so often in such a short period of time, he's starting to build a tolerance to it.  It took a little more medicine today to achieve the same effect.  The whole process only takes about 15 minutes and he does really well.  The meds they use are Ketamine and Versed.  I think they may have used Ativan as well on Sunday (not sure since I wasn't here).

The wound is looking even better than I thought it would after seeing it Saturday.  His next scheduled change is for Wednesday.  They're hoping to let him last until Saturday for the next change, but we'll know more after Wednesday.  Once Eli was awake enough to eat and drink, he had a good lunch!  He doesn't eat a lot at once, but he eats several bites of things throughout the day.  Today, he ate a pretty fair amount in a short time and then took a much needed two plus hour nap.  He did well with supper too and is asleep as I type this.

The plan for Tuesday is to resume some Physical Therapy.  He hasn't had any since last Wednesday, the day his chest tube was accidentally pulled out.  Oh, yes, his chest tube drainage has been steadily decreasing.  Nothing yet has been said about when we may be rid of it.  

As of now, we don't have any guess how long we'll be here.  The wound vac is working great at healing him, but you have to remember he has a three inch incision about an inch and a half deep into his chest. He's doing great, but it still takes time.  No one has ventured any guesses, but I think it's safe to assume we'll be here for at least two more weeks.

Zachary and Bryan went fishing tonight at my mom's pond.  They had quite a catch and Zachary is looking forward to eating some fish!  I know he misses me & Eli, but it's already improved his mood to have Daddy home.  Hopefully spending some time with me this weekend helped him as much as it helped me!

Tuesday, May 7, 2013:  Eli got a blood transfusion last night.  His hematocrit was lower than they'd prefer for a single ventricle baby recovering from two surgeries in three weeks and trying to heal a large wound in his chest.  Blood was ordered yesterday morning.  It was finally available by 3am.  Eli's a type O, so if it took that long to match him I can only guess that the blood supply is low.  {Insert plea for blood donation from anyone who is able to donate.  FYI:  Eli has received 8 units of blood this admission alone.}  Because of his nighttime medication schedule, they've changed when his vitals are taken so they can coincide with medication times throughout the night.  That gives him more opportunity for sleep.  That didn't happen last night though because of the blood administration.  Because of that we slept in this morning (as much as you can in the hospital!).

In addition to his regular visits from cardiology and infectious disease, we met with a social worker who introduced me to some programs that may be available to us for Eli.  Some are financial and some are support systems.  She suggested that we apply for some of the financial assistance simply to get our foot in the door as Eli has an ongoing medical condition and will need care for the rest of his life.  The other meeting we had was with dietary.  They're trying to figure out the best tube feeding for him based on his oral intake.  Protein is crucial to wound healing and that's usually not one of Eli's strong points in a meal.  They're impressed with the variety and amount he does have, but agree we need to be a little more aggressive on his tube feedings.  When we feed at home and so far here in the hospital we've used a formula that is 30cal/ounce (a 1 calorie per 1 cc of fluid ratio).  They're changing it to 1.5 calories per cc formula and attempting to increase the rate of his infusion so he gets more in the same amount of time.  Depending on how he tolerates that for the next few nights they may add some protein powder to the formula to increase his overall calories and protein.  Ideally he should have about 1000 calories/day.  If he tolerates the new formula at a faster rate and the protein powder, that means he'll receive 540 calories via tube feed and his full requirement of protein.  We'll see how the next few days go.

His next dressing change is Wednesday.  We're aiming for it to happen between 8 and 9am so we don't have to keep him NPO all morning.  Based on what they see with the wound change tomorrow, they'll decide when his next one will be. 

I'll try to be better at updating daily or every other day.  This weekend was fun and I wasn't on the computer much, but overall it's easier for me to keep track if I do it more often!  Thanks for your prayers and support!