Friday, April 26, 2013

Day 9, Post Op Fontan (April 26)

Today started off like any other:  some omelet for breakfast, half a cup of yogurt, sitting on the couch with Peyton Manning getting our picture taken, going for a wagon ride.  You know, nothing new :)

Yes, Peyton came to visit today!!!  Yes, he really is that tall.  It was very quick and we didn't even have time to get our camera out.  Eli was on the couch on my lap and Peyton comes in the room and says "Eli.  I know that name!"  He shook hands with Bryan then me and sat next to me on the couch.  A PR lady was across the room and took our picture.  Eli wasn't sure what was going on.  He was upset (probably thought Peyton was another doctor who was going to whip out a stethoscope or put a tube in him) and Peyton joked that we'd need to photoshop a smile into the picture!  He had orange stadium blankets embroidered with an 18 to pass out to each patient. 

He told us he thought about and prayed for all the patients here as he shook hands to leave.  There was a nursing student and her instructor in our room at the time and he shook hands with them as he left.  After he was gone we all just looked at each other and said, "Did that really happen?"

It was a quick visit, but from what we understand, he was going to every pediatric room in the hospital that wasn't in isolation.  There were other events at the hospital going on today centered around his visit.  Tomorrow night is the big PMCH Gala which raises a lot of money for the hospital.  I'm sure he'll be at that.  We also heard that country music star Luke Bryan is performing.  It was really neat to meet him in here, but I have to say I wasn't as awed as I thought I would be.  Yes, he's a sports superstar and has done many, many good things outside of sports.  Lending his name to this hospital and supporting it the way he does is an example.  As great as it was to meet him, we're still more in awe of the doctors, nurses, aides, therapists, nutritionists, etc we've been working with to save our son.  That's why it pleased me so much that Peyton took the moment to shake hands with the nursing student and her instructor as well as visit with the sick children and their parents.  He is a gentleman and has earned the endearment he has to this city, not only because of his achievements on the football field, but mostly because of the person he is off the field. 

In other news, Eli went for another wagon ride.  It was much like yesterday in that he fussed and fussed until we started rolling.  He held himself up much better today and we went twice as long as we did yesterday.  He was definitely ready to get back to bed when we were done though! 

Day number 2 of walking the halls
A chocolate ice cream treat for the boy who worked so hard holding himself up in the wagon.  Eli wanted to hold the ice cream and feed himself.  He did a pretty good job!

This afternoon we had to get him on his feet.  He hasn't stood since Wednesday the 17th.  He didn't want to today either!  It was really hard to help him because we can't hold him under his arms.  That's one of the restrictions after his surgery, because his sternum was broken open, we can't lift him under the arms for six weeks.  We had to support him by one of us holding his legs and the other one keeping hands on his back for support. 

Trying to entice him to stand with some toys.  He wasn't falling for it. 

We tried to have him stand for a few seconds and he did well at first, but then his little legs started to buckle underneath him.  We put him back on Daddy's lap and let him rest a little.  He started whining for me so I got on my knees about two feet in front of Bryan.  We made him "walk" to me. They were shuffle steps and he had four hands supporting him, but HE DID IT!!! 

You can almost hear the protests as you look at the picture!  This picture doesn't show them well but I had found some "Rubbies" socks at WalMart yesterday.  I picked them up thinking they would be a good choice for when Eli had to get out of bed and start walking.  The pair I grabbed is blue with different colored dinosaurs!

It felt so good to scoop him up in my arms.  He kept crying and pointing to the bed.  These days when he asks for Elmo, he means his Elmo blanket from Aunt Cara.  He seems to think if he pulls it up to his chin, the nurses, docs, etc can't or won't get through it to him.  It's funny that he thinks he's figured that out but it's also sad. 

Before we had him up he had a snack.  He didn't have much lunch because he was worn out from the wagon ride, but we saved it for him.  He wanted the fruit so he did eat a fair amount of apple and orange pieces.  Then he saw some Pringles we had stashed in the room and had to have some of those!  


Overall he is gaining strength, it's just a very, very slow process.  He's been back in his bed for a while since we had him on his feet and he's taken two or three cat naps.  He's kind of whimpering in his sleep and I know he has to be sore.  He's still on Tylenol every six hours and he can also have Ibuprofen every six.  We've been staggering it so he gets something every three hours.  He's not due for his next dose for another hour.  He does have morphine available, but I really don't think that's appropriate right now.  I have no doubt he hurts, but he's not screaming in pain, his vitals are good, and his breathing is not labored.  It's very hard as a parent to make the right decisions regarding his pain control.  We want him comfortable, but we don't want to knock him out.

Speaking of vital signs, his oxygen was turned down again today.  He's now on 0.25 liters and keeping his resting sats above 94% most of the time.  We took the oxygen off at one point this afternoon just to see what his response was.  Within 5 minutes he was in the mid to upper 80s and slowly dropping.  He's back on the 0.25 liters and we'll just try again later.  For some reason these heart babies seem to hang on to that last little bit of supplemental oxygen!

As far as his infection goes, we know he has staph.  As of this morning, the cultures they drew yesterday are still negative.  They may still turn positive but the longer they take to turn means there's less of the bacteria in his system.  His antibiotic was changed to Oxacillin yesterday.  It's an IV antibiotic he'll have to be on for a minimum of three weeks.  As his healing from surgery progresses, he'll have his chest tube removed (maybe in the next two to three days?) and keep gaining strength.  Once we reach the point that the only reason he's here is for antibiotic therapy, he can be discharged home.  We'll either have to give him the antibiotic four times a day through his PICC, or get a backpack from the pharmacy equipped with a pump and timer.  They would be able to mix a day's worth of antibiotic and have the timer set to automatically give the medicine.  For the in-between times, he would receive a very slow infusion (approx 2cc/hr) of normal saline to keep the vein open.  We're not sure which method we prefer.  With the backpack we only have to hook him up once a day, but he'd have to carry a backpack everywhere (playtime, diaper changing time, sleeping) and have an IV line hanging from his right arm to the backpack.  The other option of hooking him up four times a day is an advantage because it doesn't have the disadvantages of carrying the backpack, but the less often the line between him and the medicine is 'broken' the better.  We'll have to keep the discussion going!

Today at Zachary's preschool, it was "Z" day.  He was excited because for Z show and tell he could take himself!  He wore his Zachary's Fan Club shirt.  My mom took him to school and was wearing hers too.  He was so excited when he walked in the room only to see his teacher, assistant teacher and one of his classmates wearing Z's Fan Club shirts as well!  Thanks to Ms Angie, Ms Carrie and London for helping make Zachary feel so special while Bryan and I have so much attention focused on Eli.  We are so fortunate to have our families close to home so Zachary's routine isn't totally rocked by all this.  Thanks to Mamaw Betty, Mamaw Linda, Papaw Mark, and Aunt Kendra for taking such good care of him while we're gone.  Also, a big thank you to Aunt Ashley Norris for taking three days off work last week so Zachary could stay at her house and come visit us those first few days.  Our family and friends are definitely keepers!

Right now Eli's sleeping in his crib.  He's sat up a lot today and used a lot of muscles that were cut during surgery.  I can't image how achy he must be.  Thanks for reading and for continuing to keep us in your prayers!

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