24 April 2014

Post Op Cardiology Visit

Kayla had her post-op cardiology visit.  They did all the normal checks.  Her pulse ox was 93, height 36.75"...I forgot the weight.
They also did x-rays.  The doctor said she was looking good and took her off 2 medications.
She got sent home with this lifecard cf/holster monitor.  She has to wear it for 24 hours.  It's like an EKG.
She got this mesh shirt to go over it, so she wouldn't mess with the leads.
Here are the leads.
It's too bulky to wear, so I put it in one of her purses.  She likes wearing it, but has a hard time not pushing any of the buttons.  We're only supposed to push the green button if she has issues like vomiting.  
The day before Kayla had another dental visit to checkup on her grey front tooth.  The dentist said it didn't look like it changed, but if it gets bad it might need to be pulled.

17 April 2014

Pediatrician Visit

A nurse called me earlier this week.  Since we got discharged on a Sunday, they missed that we were supposed to be scheduled for a pediatrician followup and that Kayla has to have lab work often because of one of her medications.

Kayla's nurse said Kayla's lips were the pinkest she'd ever seen them.  :)  Her pulse ox was 91, weight 27.7 lbs, and height 36.5"

We listened to Frozen music while we waited for the doctor.
Luckily, they have a machine that can check her levels with just a finger poke.  She cried as soon as she saw the lady put gloves on.  She used to do the same when she was a baby.  
Afterwards, she got a pink band-aid and was able to get a prize from the treasure box.
Here's a pic of Kayla's breakfast.  Kayla's next cardiology visit is on Wednesday.  Hopefully, we'll be able to get rid of 4 of those medications.  
Scars 3 weeks post fontan

16 April 2014

Frozen 24/7 - Making Clothes

Ever since we got back from the hospital, all Kayla wants to do is anything related to the Frozen movie.  We watch the movie, listen to the soundtrack, read the book, sing the songs, and play it.  

Kayla would sing the "Let It Go" song in her Cinderella dress.  Super cute..but I wanted her to have an Elsa dress, so I searched online and at Walmart, Target, and JCPenny stores in town.  Most stores were sold out of any Frozen toys/clothes.  The dresses were being resold on eBay for way more than I wanted to pay, so I decided to just make one.  


I couldn't figure out what to make with the top part.  My fabric choices were limited at the fabric store that I went to, so I chose the only shimmery blue knit fabric available.  



Instead of making the cape go around the neck, I made it with shoulder straps.  The sequin ribbon was elastic, so that made it easy.  If you notice in the movie, the cape is actually attached on the back of the dress under the arm area.   

Kayla wasn't really satisfied with that and got her super hero cape to go over it.  She watched the movie more and realized the cape that Elsa wears around her neck is the one she wears before she changes to her main outfit.

We went to Walmart today and she found this wig that she had to have.  We don't normally buy toys at the store when the kids are around.  However, I told her after her surgery that she could pick anything she wanted as her "after surgery" present.  I thought maybe she'd pick an Elsa doll or the castle, but the wig was a must-have.
She was excited to get it.
She loves wearing it with her dress.
I also made her a Frozen shirt.  Kayla chose which picture she wanted on her shirt and I cut the design and used my neighbors heat press to get it on the shirt.

10 April 2014

We're Home

We've been home for a few days.  Kayla is getting better everyday.  


Kayla has been a great napper.  The meds make Kayla and Chris tired. haha.  Chris has been getting up early and giving her the meds. He's such a great dad.  

We weren't able to get her the sodium chloride prescription until Tuesday night.  I went to the store to find some salty snacks that weren't too fattening.  I found these pretzel crisps that had a ton.  Unfortunately, Kayla prefers sweet snacks.  David loves the salty.  I made a super salty popcorn snack that Kayla wouldn't eat, but David loved it.
 Thanks to Chris's team at work for sending us a cheesecake!  We all loved it.
It's always easier to take great pics of the kids when there's cake involved. :)

We enjoyed the warm weather today.  

It's so great to see Kayla playing outside.  She is doing so well.  I think she is still a bit sore around her chest.  The scar on her chest is healing nicely.    I haven't really heard any heavy breathing from her like she was doing before surgery.  I'm so glad to see her with energy.  Chris and I are amazed at the improvement that she's made from just being at home.  I never would have thought that she would be on her bike or plasma car 2 weeks after surgery.

She still hates taking her meds.  Yesterday she threw up after we had dinner at just mentioning having to take them..  We hadn't even started giving them to her yet. 
We've been figuring out ways to get her to take her meds.  For example, today I mixed her sodium chloride (salt) in her milk with a packet of carnation breakfast essentials.  I let her pick the flavor at the store, so it made her happier when she was drinking it.  She had the rest of her sodium chloride in chicken soup that I made for lunch and dinner.  Yesterday, she finally started eating regular amounts of food.  I think today was her first day eating normally without any vomit.  Yay! :)

06 April 2014

Hospital Day 13 - Discharged! :)

The doctor had told us yesterday that if she had a good day and they got the right dosage of her Coumadin, then we'd be able to go home.  We weren't quite sure until after Kayla had visitors on Saturday.  She's been pretty sad most days and unmotivated to do anything, but seeing people she loved really help her get out of that funk.  We got the OK from the cardiologist in the morning.
 Kayla IV from her neck and hand removed.  The leads and pulse ox came off too. 
 Being unplugged from everything feels great.  We were all excited to go home.




She's still going to be moody at times, but she gets over it.


Since today was Sunday, we had a difficult time with getting our prescriptions.  The pharmacy at the hospital was closed, and we didn't get back in town until 4pm.  The resident had phoned in the prescriptions, but our pharmacy was only able to fill a few of them.

Here are the meds that were prescribed:

Coumadin is a blood thinner.  Kayla will probably be on this for 6 months to a year.  While on this, we have to make she avoids consuming too much vitamin K which is in leafy greens like spinach.
Digoxin helps with the heart rhythm issue that she had a couple days ago.  This is another one that she'll be on for a while.

Captopril is for high blood pressure. Lasix and Spironolactone are diuretics needed so she doesn't get fluids in her lungs.  NaCl (Sodium Chloride) is needed because she doesn't get enough salt due to the diuretics.

Hopefully, we'll be off the Captopril, Lasix, Spironolactone, and NaCL after we see the cardiologist for our follow up appointment.

Oxycodone and Tylenol are for pain.  We chose not to get those since she doesn't have much pain.

She's been taking baby aspirin since she was 3 months old after her Glenn surgery, so there's no change there.  She will be taking aspirin her whole life.

Unfortunately, we weren't able to get the NaCl or Spironolactone.  Hopefully, we can get it tomorrow.

Kayla is also on a heart healthy diet which is mostly a low/no fat diet.  We also have to monitor her fluid intake and make sure she doesn't consume too many liquids.  No more than 900 ml a day.  I think the biggest change will be that we switch her to skim milk and I will have to check the labels on everything to make sure I choose foods that are low fat.  Thankfully, she is my healthy eater, so it's not much of a change.

Kayla will still be recovering at home until our follow up cardiology appointment in 2 weeks.  We will be avoiding sick people and large crowds.  So please don't come around Kayla if you're sick, and make sure you wash your hands before being around her.  Thanks! :)