Monday, April 29, 2013

Day 11, Post Op Fontan (April 28)

Saturday night was a little rough for Eli.  He was hurting a lot and we gave him a dose of morphine around 9pm.  Everything he did seemed to make him hurt and his oxygen sats were steadily lower than what they had been.  After the medicine took effect he was pleasant to be around!  His nurse even stayed in the room for a long time because he was being so funny.  He slept pretty well, but his oxygen saturation was lower than it had been (although it was higher than when he was in pain).  His monitor is set to alarm whenever his sats reach 91% or lower.  They were going off all night long. 

As Sunday progressed, he was fussy and cranky.  Some of it is just the fact that he's done with being here.  Some of it is the fact that he hurts.  His chest tube only drained about 70cc Saturday (just over 2 ounces), but Sunday he beat that on day shift alone.  Dr. Kumar (cardiologist who was rounding this weekend) said we could think about taking the chest tube out when he had a couple consistent days of less than 40cc.  We're not there yet.  I'm sure it hurts Eli to have that fluid pushing on his lungs. 

A look at Eli's chest tube.  I can't remember if I posted this before.

In happier news, we had several visitors today.  Bryan's Great Aunt Jean and Great Uncle Larry along with their grandson Max came to visit.  Later in the day, Bryan's parents and sister brought Zachary to see us!  As they were getting ready to leave, my sister came.  It was nice to see non-medical adults again.  It was especially nice to hold Zachary!  He looked like he's grown in the past week!  He was a little sad to leave, but he did very well and not too many tears. 

While he was here, he stayed very busy.  He showed us a new game Aunt Judy bought him, we took Eli for a wagon ride (Zachary pulled most of the two laps while Bryan pulled the oxygen tank), the boys each had a popsicle from the nurses station, and Zachary got to help me unload our clothes from the dryer. 

The Veale men

Popsicles from the nurses...Zachary was happy, Eli not so much.

Eli was laboring and fussy after his wagon ride (second of the day) and his nurse didn't like his color too well.  We gave him another dose of morphine which again did the trick for him.  The night shift nurse turned his oxygen up from 0.25 liters to 0.5.  It seems to be keeping him more steadily in the low to mid 90s barring any outbursts from Eli.  Poor lil guy just can't get comfortable in bed anymore.  He'll ask to sit up and then he'll cry and want to move.  We'll move his position then he'll lay back down and fuss a little more.  I can't imagine how he feels.  Even more frustrating is that he can't really tell us when & where it hurts.  We have to guess and I'm always afraid we're wrong. 

Holding Daddy's hand

He needed some comic relief after the morphine started helping him.

Other than seeing Zachary and our other visitors, our highlight of the weekend was getting a refrigerator in our room.  Yesterday morning I made a comment to our nurse that I felt like we were wasting milk and juice because Eli couldn't drink a whole carton at a time and it would sit out too long for him to be able to take it.  She said she'd be right back and within a few minutes came pushing a mini-fridge into our room!  Later she came with several juices and cartons of milk to stock us up for a while :)  They're making it harder and harder for us to leave here... but leave we will when Eli is ready!

Full of goodies!

Here's a quick look at what our room looks like.  It's a little messy given we had just entertained a total of eight other people throughout the day and done some laundry. 

Sink, nurse's work area, computer, IV pumps & feeding pump, crib.

The desk and chair where we post updates & blogs!  Of course that's baseball on tv....every evening it's always baseball and/or basketball!

Our couch (pulls out into a bed.  Comfort level?  Not too shabby!)  Our closet, but it's blocked by all the junk on the floor we couldn't fit into the closet.  Tomorrow is definitely a "pack some crap out to the van" day.

Our bathroom, complete with our very own shower stall.  It's great having our own bathroom, but we'd love it if the mirror was a little higher.  It cuts us both off at chest level.  Granted we're in a children's hospital and most kids aren't as tall as we are, but aren't there a lot of parents who stay with their kids?  And aren't a lot of them taller than 5'2"?  And couldn't you have a pediatric patient who's in their late teens and taller than the mirror?  I do realize that if this is my complaint about the hospital, then we're in good hands....well, the bathroom mirrors and wishing they had Coke instead of Pepsi!
We also opened up some of the mail that has been sent for the boys.  This is a photo of things sent for Eli, Zachary's are back in Washington. 

Thank you to everyone who has mailed cards for our boys!  Some even included Mommy & Daddy!  It's so nice to see the messages people are including with their cards.  Thank you so much for the encouragement and support!
Specific Prayer Requests:

- that Eli continues to get stronger and experience less pain
- that his chest tube can come out soon (but obviously not until he's ready!)
- for Zachary to continue to be stronger than a five year old should have to be as he is shuffled among loving family members while Bryan and I are with Eli
- for things to be going well enough with Eli that Bryan can go back to Washington on Tuesday for Zachary's ball game & to spend the night with him
- for a fellow heart baby in Tennessee (Braxtyn) who is having a really rough time right now and was flown to Vanderbilt this evening because of some very serious complications.  His parents have become very vocal CHD advocates
- for all the doctors, nurses, and therapists involved in Eli's case, that they continue to provide excellent care and see all the pieces of the puzzle that is Eli

That's not asking for much, is it?  ;)  Thanks again for reading and caring about Every Little Beat...

1 comment:

  1. God Bless you, Eli! Keep fighting little man! Prayers!