31 March 2014

Hospital Day 7

Now that we're in the intermediate room, Kayla has to go to radiology for her x-rays.  She enjoyed traveling in a wagon.

Kayla getting her x-ray.  The doctors said it looked good.
We even got Kayla to smile.  Smiles are coming easier today.  I think we've finally got her back today.  She is her normal chatty self.  
She even let me hold her today.  I missed having her in my arms so much!  She is such a sweetie pie.
The nurse gave her a little purse to hold the box that is connected to her leads.  She went for a walk to the playroom.
Kayla was excited to see another little girl in there.  They colored together and played with the kitchen.

Kayla wanted a big bow in her hair because the other girl had one, so I found her a big flower one.  Here's a video of her today that shows her mood.  She's pretty happy, but keeps rubbing her chest because her scar is very itchy.  I tell her not to rub it.  If she scratches it, it could become infected.  That would cause the doctors to need to open her open again to drain it.  We definitely don't want to be here any longer than we need to be.

Overall, she is doing better.  Her afternoon walk was good.  However, we were barely able to get her to do her walk at night.  She had just woken from nap and was not in the mood.  When we did get her to the playroom, she cried and complained that her tummy and back hurt.  She walks a little hunched over.

She is eating better.  We are slowly reducing her medications which helps a lot.  I think she's starting to love the room service.  She enjoys choosing her meals.  For breakfast she wanted oatmeal, toast, fruit cup and chocolate milk. She had a few spoons of oatmeal and ate all of the honey dew and cantaloupe that came in the fruit cup.  For lunch she had baked fished sticks, baked chips, apple slice, and some carrot & celery sticks.  For dinner she had 1/4 of cheese hamburger, leftover baked chips, and some cantaloupe.  She kept most of it in.  

She is on a very strict heart healthy diet for at least the first 3 months after surgery.  This mostly means only eat foods that are low in fat.  We have to switch to skim milk and can't eat fried foods.  We'll also have to monitor her liquid intake carefully.  She can't have more than 900 ml of liquids.  This isn't really a problem for now since she's so small, but as she gets older it'll probably be more difficult.

30 March 2014

Hospital Day 6 - (4 days post op)

 We're seeing progress everyday.  She was able to get her chest tubes and pacing wires removed.  They gave her morphine for this.  She was so brave and didn't complain or cry at all while they removed these.  They said she did better than teenage boys.
 This is how she looked with her tubes and pacing wires removed from her chest.
They took an x-ray afterwards and she actually said cheese for her picture :)
 Here's what our ICU room looks like.
 We got her to sit in a chair again too.  She loves all the gifts that she's been getting.  She was also able to get the oxygen removed too.  Her sats are in the 90s which is best we've ever seen without oxygen.  
 Now that we've gotten the chest tubes, pacing wires, and nasal cannula removed, we were able to move out of ICU.  Yay!  Her mood was a lot better when we moved to this room.


 Thanks to everyone who made something for her room.  She loves all the decorations that all her friends made.  

She still hates taking her medication.  Just the mention of it makes her cover her mouth and cry.  It's even difficult to even get her to take the half baby aspirin that she is used to taking everyday.   We've tried all kinds of ways of hiding it like mixing with ice cream or apple sauce.  She gags and vomits a lot, but we've been successful a few times.  She knows we're trying to trick her into taking her medications a lot of times too, so that makes it even harder.

She was able to eat some real food today.  The morphine made her nauseous again, so she wasn't able to keep anything down until dinner.  I ordered her some spaghetti, a roll, and mashed potatoes and she ate some of it.  She had a few spoons of mashed potatoes.  However, when I put a little gravy in it, she threw up.  I think she thought I was trying to put medicine in it, and then refused to eat any more of it.

She was pretty grumpy yesterday and would barely talk to us.  She would mostly glare at us or give blank stares.  However, today she started talking more.  She liked having a bow in her hair, getting her toenails painted, and putting some of her own clothes on.  Although, later we found out that the nail polish on her toe nails prevented us from putting the pulse ox on because it can't get a good signal.  The pulse ox's red light is irritating her finger, so we're having to move it every 2 hours instead of every 4 hours.  I had to wait until she was sleeping to remove polish from her big toe.


29 March 2014

Hospital Day 5

Kayla wasn't able to get her chest tubes removed today because there's still stuff draining.  Hopefully, those and her pacing wires will be removed tomorrow.



She has a heart pillow to hug when she coughs.

She was awake for most of today and watched lots of DVDs.
We got her to eat towards the end of the day.  She was refusing to eat earlier because she didn't want to throw up.  Unfortunately, when we gave her meds, it all came back up.  The captopril and even Tylenol made her gag.  Chris and I remember her doing this after her first surgery too.  The doctor is prescribing the chewable and maybe that will help.

28 March 2014

Hospital Day 4

We had a little progress today.
 The dressing from her scar on her chest was removed.  The arterial line that was in her right arm got removed.  The NIRS on her head and back that monitor oxygen were also removed.  They took her off morphine.
 With some assistance, she was able to get out of bed and walk to a chair to sit.  Chris brushed her teeth. 
 She was really tired.  It was difficult to try to get her to stay awake.  I played the Frozen soundtrack on my phone and she'd quietly sing along with her eyes closed.  It was really cute.  
We attempted to get her to drink water and eat a Popsicle.  She threw up some. 

She's started a new breathing treatment today.  She has to blow into a green tube to make a ball to go up.  She wasn't very happy about it.
Becca is her night/morning nurse.


David While Kayla is Away

This week is spring break for David.  Chris's mom and grandmother are taking care of David and most importantly keeping him preoccupied.

David spent a few days on Chris's uncle's farm gathering eggs and fishing.

David eating eggs and toast with muscadine jelly

David caught his first bass!

And got to eat it with apple and pecan pie!



Kayla has asked where David is and David says he loves and misses his sister. It is sweet that the kids miss each other.

Chris and I are glad that David has wonderful people to take care of him.

27 March 2014

Hospital Day 3


In the morning the bleeding had significantly slowed down and Kayla's blood pressure was better.  The doctors said she most likely wouldn't need surgery.  

Kayla has 3 chest tubes that drain fluids.  This pic was taken last night.  Notice how red they are.

These measure the output of the chest tubes.
They are a bit worried about her lungs and started respiratory treatments. Kayla seemed to like it and the respiratory specialist said it feels like a massage.


 Almost every time Kayla has woken up, she always ask for water.  I was glad to finally be able to give her some ice chips.
 Kalya had her RA line removed from her heart. This line was used to measure blood pressure and give her medicine. 

The place with all the blood is where the line was removed.  Notice that the chest tubes are a lighter color now.  They'll need to be almost clear before they remove them.
She got an echo before and after the RA line was removed to make sure there was no extra fluid around her heart.
Our nurse Brandi for today :)


They also removed the catheter.  She refuses to pee in a pull-up, so we were able to get her out of bed and sit on a potty.  They've given her lasix to help her pee more.  However, she wasn't able to go on her first try.

26 March 2014

Hospital Day 2 - Surgery complete

Kayla is out of surgery and in a recovery room now.

 We got to see her for about 10 minutes.


We did see her wake up for a bit.  She kept trying to pull the nasal cannula out that gives her oxygen.  They gave her morphine to reduce pain.
----
We had a rough night after surgery.  Kayla was bleeding too much from her chest tubes.  She had to have blood, plasma and platelet transfusions. The doctor told us he was sorry and that she would most likely need surgery again to stop the bleeding. When doctors say they are sorry, it has not been a good thing. As a last resort they gave her Factor VII.  Then we waited for hours. The bleeding slowed down some and we fell asleep hoping tomorrow would be better.


Hospital Day 2 - The Fontan Surgery

Around 7:30 a.m., Kayla went into surgery.  Before going in, the anesthesiologist gave her some anti-anxiety meds.  Chris and I have her hugs and kisses, then we sat in the waiting room.



Writing this update.  It's like you're here sitting with me in one of the chairs. :)

7:30 - Kayla went into surgery and they started prepping her and connecting her to everything.

9:00 - The surgery has started.  They are working on getting to the heart and putting her on bypass.

10:00 - Kayla is on bypass now and they've started the procedure.  They will be using a size 18 gortex tube.

11:05:  The rerouting around Kayla's heart has been finished.  They're going to give her an echo to make sure her heart is functioning the way it should.  There's been some minor bleeding, but she hasn't had to have a transfusion.  They will still monitor the bleeding from her heart for a while.  They had to use a pacemaker to get her heart back to a normal rhythm, but that only took a few minutes.

11:55 - Everything has gone great so far.  They are closing up her chest and sewing it back up.  She hasn't had any additional bleeding.  They should wake her up and put her in a recovery room in about 45 minutes.

1:05 - The surgeon came and told us she is doing well.  The surgery is all done and Kayla is recovering now.  A social worker will come get us to see her in about 45 minutes.  We will be allowed to see her for 10 minutes every hour.

Hospital - Day 1 - The EP Study

We're back in Little Rock for Kayla's Fontan surgery.  We were scheduled to be at the hospital at 11:00 a.m., so we left the house around 6:20 a.m. and arrived in Little Rock around 10:00 a.m.  When we got there, we checked in, did some paperwork, and then sat in the big waiting room in the ambulatory surgery center.

They got her stats (height 37 inches, 27.7 pounds, 73 pulse ox).  Then, we went to another room to wait for her procedure.
  
The cardiac cath procedure was a little different this time and is called an electrophysiology study (EP study). Kayla's EKG shows extra electrical pathways which could cause Tachycardia.  Tachycardia is a very fast heart rate which could potentially be dangerous. This procedure had to be done before her Fontan because the surgery will remove the blood veins used to get to the heart. 

They started the procedure around 1:30 p.m. and called to give us updates every couple hours.  The procedure lasted 4 hours.  

Kayla was happy going in.  I guess her last heart cath wasn't too bad for her.

The EP study showed that Kayla has two extra pathways on the outside of her heart.  The doctor tried to remove these pathways for 4 hours. Because of the difficult location of these pathways they could not be removed.  The good news is that the doctor could not cause tachycardia.  She is considered to be at a low risk for tachycardia, so we are able to proceed with the Fontan surgery today.

Kayla had just woken up when we got to see her.

She was super hungry and chose a green popsicle.  She said it tasted like strawberries.

We moved to our room for the night and they took a couple x-rays.

She did well most of the night.  Since she hadn't eaten all day, she was starving.  Unfortunately, the anesthesia made her nauseous.  She threw up the popsicle and jello.  The nurse requested some meds to reduce the nausea, but she fell asleep before we were able to get her any.  The nurse was able to give her some jello around 11:30pm, but she couldn't consume anything else after midnight due to having surgery in the morning.  

Around 3:30a.m. she woke up and needed to pee.  This was a little difficult because she was still connected to a bunch of stuff. She refused to go in her pull up, so we had to get the nurse to show us how to move everything around to get to the toilet. Afterwards, she watched some Winnie the Pooh on Dad's ipad and fell back to sleep.