Tuesday, May 21, 2013

Days 30 through 33, Post Op Fontan (May 17-20)

Friday, May 17, 2013:  Aunt Cara, Uncle Andrew & baby Alyssa came to visit.  Eli was pretty tired by the time they got here since he hadn't napped all day!  He wasn't super friendly, but did show them the play room and his room.  He and Alyssa had fun taking toys from each other!

Eli and Alyssa "sharing" some grapes

Saturday, May 18, 2013:  Big news of the day was the arrival of Daddy & Zachary!  They hadn't seen Eli moving around yet, so to have him greet them when they got off the elevator and escort them to his room was very exciting for them.  The boys obviously missed each other because they sat next to each other on the couch for a long time.  They kept leaning on each other and reaching out to touch the other one.  Very, very cute!  We ate lunch then went to the playground and play room.  Bryan's sister Ashley & her boyfriend came to spend the evening with Eli while Bryan and I took Zachary to the Pacer game.  We had a blast, it was game six of the second round and the Pacers wrapped it up by beating the Knicks.  After the game, Z and I went to my sister's house for the night and Bryan stayed at the hospital with Eli. 

Enjoying lunch together on the couch in Eli's room

New artwork for Eli's room, provided by the young artist known as Zachary.  Yes, it's five dinosaur drawings.  What did you expect?  :)         

The four of us on the playground
Blowing some bubbles
Daddy, Zachary, and Mommy in our Blue & Gold shirts that everyone wore for the exciting game

Zachary with a Tyler Hansbrough bobble head.  

Sunday, May 19, 2013:  Zachary and I came back to the hospital and spent some time with Bryan, Eli, and Bryan's parents.  Then the three of us went to Red Robin (had been given a gift card and we've never been there....it was very good!)  Bryan and Zachary headed back to Washington and Eli & I settled in for the night.  He's not gone to sleep before 11pm for over a week, but tonight he was asleep about ten minutes before 11.  I'll take it!

Mommy with her boys.  This photo was take number seven or eight because Eli kept attacking his brother.

One more "see ya later" kiss from Daddy

Monday, May 20, 2013:  Eli spent a lot of time out of bed today.  As soon as he was unhooked from his morning antibiotics, he wanted to walk.  We (his student nurse for the day and me) took him to the play room, the playground, and around the unit.  Well, really he took us.  We just follow his lead.  When we got back to the room he got a bath.  He had been wearing his Zachary's Fan Club tshirt and dinosaur socks since Saturday morning (by Sunday night we were both too tired to mess with a bath and we didn't really see the point!).  After his bath, the dressing over his incision was changed.  It looks great.  They may not replace that dressing when it comes off in three more days.  After he ate lunch he wanted to walk again.  When we came back he sat on the couch for a long time.  He colored and drew pictures and got his afternoon antibiotic.  Then we went to therapy.  The therapists and I have worked out a deal.  They let me know when they're in the area and are a patient away from coming to Eli.  I get him out of the room to the playground, play room, or wherever he takes me and they will "join us" for play time.  He responds to this much better than if they come in the room and try to get him to participate.  The sense of joy I get from partially outsmarting a two year old is kind of sad.

Found a new love in therapy today...the tricycle!  He did really well and wanted to use it again in the evening, but it stays locked in the therapy room so he had to settle for a Cozy Coupe car!

After a long therapy session he wanted to keep playing but mean ole mommy made him lay in his bed.  He was asleep in a few minutes.  As soon as he woke he wanted to go out again, so I ordered his supper and we walked.  Again.  :)  He wouldn't get into bed for supper so he sat in a chair in the room and ate really well.  Then we had to walk again.  Finally he consented to get into bed and was asleep by 10:45.  That's early for him these days!

Recap:  I realize I haven't given much medical info during the daily write ups in this post.  Overall, they're pretty much the same.  His energy is increasing.  His appetite is pretty good.  He's tolerating the low fat diet.  His antibiotics were changed from Oxacillin (which was four times a day) to Ancef (three times a day) because the Oxacillin was affecting his liver.  Dr. Belcher told us from the start that this would likely happen, but he wanted to use Oxacillin as long as possible because it's the #1 drug against Eli's staph infection.  He's been on it for over three weeks so Dr. Belcher was pleased it took that long for it to adversely affect him.  He's doing well with the Ancef and his liver function numbers are steadily declining.  We'll know more later this week about how long Eli needs to have the antibiotic therapy.

Another good thing that's happening is that his chest tube output is declining.  It's counted in 24 hour time frames, from 6am to 6am.  At 6am Sunday morning his 24 hour count was 68cc (just over 2 ounces).  At 6am Monday morning his count was 13cc!!!!  Everyone is cautiously excited about it.  Dr. Abraham ordered that no one draw off his chest tube today (unless his breathing was labored and we thought he would benefit from having the fluid removed in which case there would probably have been a large amount of fluid....nothing like that has happened for over a week).  He'll have a chest x-ray in the morning to see how much and where any fluid may be.  If there's not much, the chest tube will come out soon.

Everyone is VERY cautious about this because Eli's chest tube output has decreased twice before only to go back up.  This time they're feeling more confident about it since we know he's got the chylothorax (fats in the fluid which is why he's on a low fat diet).  We'll see.  Of course we want to go home, but at this point what's a few more days or a week?  Whenever the chest tube comes out he'll probably stay for a few more days to make sure he's okay without it.  We will still have antibiotic therapy to do at home through his PICC line.

What is a chylothorax, or chyle (pronounced like the name "Kyle")?  It has to do with your lymphatic system.  That's what helps filter the blood.  The thoracic duct is in the chest.  It isn't really a duct, it's more like a mass of tissue.  It can get nicked during surgery or procedures in the chest area because it isn't an identifiable object.  The doctor can't look at an x-ray before he makes an incision and say "we need to avoid the area lateral to the right fifth intercostal space because the thoracic duct is sitting there."  It's something that is a risk with any type of chest surgery, but obviously not a big enough problem to avoid surgery when your child needs his blood rerouted so he can live.  When that duct his "cut" or "nicked," the contents leak into the chest cavity.  By testing the fluid that is pulled off the chest tube for triglycerides/fats, we know it's from the thoracic duct.  Eli's fluid was checked weeks ago and it was negative.  Either it was a false negative, or the leak just became substantial enough last week to show up on testing because the amount had increased and the fluid itself was cloudier than it had been.  Since switching to skim milk, using Portagen (I think I called it Protogen in my previous post!) for his nighttime feedings, and trying to stick to a low fat oral diet, the amount of fluid has decreased and has gotten clearer.  Once the chest tube is out, he'll stay on a low fat diet for several more weeks.  As a regular diet is reintroduced, chest x-rays will be done to monitor for any recurrence or increase in fluid. 

So that's what's up for now!  We are not talking about any discharge dates because it's still too early right now.  We'll know more after the chest x-ray Tuesday.  That will help Dr. Abraham determine when to pull the chest tube.  Whenever that happens, we'll start discharge planning.  Until then, we've only been told we'll probably be out of here by the Fourth of July!  They're just being funny.  And, no joke, I was given the employee discount in the cafeteria today.  We are not complaining about how long we've been here because it's much easier & safer to stay longer than it would be to have complications back home and be readmitted & have to start all this over again. 

Specific prayer requests:

- for the amount of chest tube fluid to stay low and the chest x-ray to be clear
- for my sanity because I'm now caged in a small room with an active two-year old who has energy again.  I'm not upset about this, but it does make it harder to do some simple tasks:  blog updates, shower, and bathroom breaks!
- for all four of us who continue to miss being together for more than a few hours on the weekends.  Our boys are incredible troopers!
- for the families and patients we have gotten to know here in the past (almost) 5 weeks.  Many have gone home, some have just been admitted for continuing care of an ongoing medical issue, some have just been admitted with a new diagnosis they and their families are trying to understand.  They all need more prayers and guidance as they navigate areas of their child's health they never dreamed they'd be forced to face.  We've been there.

Thank you all for the continued prayers, care packages, cards, messages of encouragement, visits, and for caring about us.  I will try to update more often this week as we gain new information, but as I pointed out in my prayer requests, that's getting harder to do!  Just know that's a good thing :)  Until next time, cherish Every Little Beat....

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