Wednesday, November 9, 2022

3 Weeks Since Surgery

Dear Hailey, 
It's been 3 weeks since you've had your surgery and I'm happy to report that kids heal so quickly! 
We came home and the first thing that we had to make was some homemade cinnamon rolls from scratch. I asked you which ones tasted better and you chose the homemade ones...no surprise there. 


After arriving home, things went back to normal for everyone except for you. You stayed home for a couple of weeks and we did all the normal things for the big kids. Watching baseball games
Nathan pitched in a few games. 
We had lots of collagen rich food to encourage your body to heal. 

You especially like fish soup. 
A week after coming home, we went back to get your stitches out. 
You walked around while they timed your stride and you were running most of the time! 
Halloween came and you got to do all the things with your friends at school. 
Hannah wanted to celebrate by having a cake decorating competition against Nathan. Nathan ended up getting sick with the flu, so Hannah just made a cake on her own...using all ingredients that you are able to eat!
We attended the school's fall festival where you were able to do all the calm activities. 
And on Halloween night, we trick-or-treated up and down our street. 

Nathan's flu passed around. Hailey, you also got sick, but it wasn't as bad as Nathan's sickness. You are coughing and had a fever for a day or 2. Hannah had a sniffy nose for a few days and when it was my turn, I was laid out in bed for 4 days straight! I could not keep much food or water down, so I just stayed in bed and binge watched Gilmore Girls...32 episodes to be exact... I don't think I've ever felt this bad before, but I am sure glad that it is now behind me. 

The weather has been amazing for going hiking and exploring in the woods. You decided to make a potion with all the berries that you found the other day. 

Nathan, you got a new prescription for your glasses. While we were waiting for them to cut your lenses, we went to the library to check out a few books. When I called you over, this is the stack of books that you brought over. After thinking through different outcomes of you walking out with that giant stack of books, I decided to make you put back most of the books....which was not very fun, but this is what happens when you decide to pull off the whole shelf of boxcar children books, even the ones with multiple copies! 

We've been pointing out all of the instances where some common sense would've been nice. Seems like you are kind of lacking in that department these days at a ripe old age of 10! 

Yesterday, you big kids stayed home while Hailey and I went to school. It was election day and school was cancelled. As I left, you guys were making pancakes on your own...too bad I couldn't stay to have some. 

And then today, we went to have another follow-up visit with the cardiologist. They took an ultrasound of your heart and things look pretty good. You still have a leaky aortic valve, but things look good and blood flow is unobstructed. We go back in 3 months to see if you need to keep up with taking your beta blockers. 


 Well, we will make another post after Thanksgiving and all the fun things that come along with that week! 

Love, 

Mommy 

Thursday, October 20, 2022

If you give a girl some Oxycontin

Today the doctors decided that you were ready to get your test tube pulled out, so they gave you some Oxycontin so it doesn't hurt as much. But when it was time to pull it, you asked for a tablet for some distraction. 
You did so well! I read that this is probably the most
painful part of the whole experience. I could tell you
were in pain, but you were so  brave...You didn't even
cry. The nurses went on and on about how well you did. 

And when you got a tablet, you started to play a dress up game and started to wish that you could get dressed up to go to a party. So you put on a dress that your neighbor gave you. 
And once you put on that pretty dress, you are going to want to go to a party, so your mom and dad take you to a party that happened to be happening right after your tube was taken out. 

So when you go to the party, you're going to want some treats. But you realize that many of the treats have dairy in them, so you are going to want to do some crafts instead. 
And when you sit down to do some crafts, different characters come and bring you lots of random things like books, toys, and coloring books. You realize that they are all not the real characters (except for batman, who sounded suspiciously like the real one) and so you refuse to take any pictures with them and ask for some paint. 
And once you get the paint, you start to paint your unicorn ornament. And after painting for about 15 minutes, you realize that you are a bit tired and hungry so you ask to go back to the room. 
And once you go back to the room, mom and dad leave to go pick up the car that randomly lost a nut the day before your scheduled surgery. So when they are gone, you eat lunch. 

But after you take a few bites of cinnamon roll and pineapple, the medicine that you had earlier causes you to get nauseous and you lose your lunch and you cry out for your mom and dad. 

When your mom comes back, there is an EKG machine ready to monitor your heart and that involves peeling stickers off of your chest.  Because the stickers are sticky and hurt a little when you peel them off, you are going to want a popsicle. 
So the nurse brings you a grape popsicle and since mom couldn't split it in half, you get both halves. And after eating a popsicle, you are going to want to do a calming activity so that you don't lose the popsicle as well. 
And after you spend some time doing a calming activity, you are going to want to go outside to let out some energy. 

So your mom takes you out to the garden and once you see a little pool, you're going to want to stick your toes in the water and when you do, your toes get wet. 


And once your toes get too cold, you're going to want to put your socks back on. And once your socks are back on, you are going to want to climb and explore the space. 
And once you realize that you can climb up the ledge, you are going to want to try to walk on it like a balance beam. (mom is super nervous this whole time...you just did have open heart surgery) 
After you are sick and tired of hearing your mom say, "be careful" or "please don't climb so high!" you want a change of scenery, so you ask for some cheerios to feed the fish. 
And once you use up all of your cheerios to feed the fish, you're going to want to explore around the pond. 


And after walking all the way around the pond, you're going to get tired and want to go back to the cardiac unit. 
And once we are back in the unit, you get a final x-ray, wait for the doctors to look at your images, and then you're going to need to pick up your medicine before you go home. 

And once you pick up your medicine, you are going to want to pack up all of your stuff to go home because you miss your family and sleeping in your bed. 
And once you are all packed up and ready to go, you're going to have to sit in traffic for over an hour just to get home. 
And when you get home, you lose a bit of your popsicle because Oxycontin seems to make you nauseus and have headaches. 

The End. 

Side note: I'm writing this post about to fall asleep. I had no idea that staying in the hospital can be so mentally draining. The constant sounds of monitors create a symphony of beeps that your brain kind of just tunes out after awhile. The sound of crying babies put me on high alert each time I hear a cry of hunger or of pain. Now we are at home, safe, I am really appreciating the stillness even though it is 10 pm Hailey and you are still awake! (You took a nap on the way home from the hospital, so I think that may have given you a second wind. 

Well, you rest up and eat up. You job is to heal. 

I want to give a special thanks for each and everyone of you who were praying and sending good thoughts our way. I want to thank all of you who gifted Hailey something special for her to occupy her time with. I also want to thank all of you who donated meals or uber eats credits to help make that task just a bit more easier. I also want to thank the hospital staff for doing all that they do to help patients in a positive and caring way. 

Love, 
Mommy 


Wednesday, October 19, 2022

Day 5 Post Surgery: Still at the Hospital

Since our last post, you've been making lots of progress. You went from having 4 heart monitors, 2 IVs, 1 JV,  an oximeter, and a chest tube connected to a bulky bubbly collector, to now just an oximeter, heart monitor and chest tube connected to a teeny tiny bulb. 

You can see the tube in the cavity. Apparently this is the thing that is causing the most discomfort right now. This is actually the thing that's holding us back from being discharged. You are still draining too much fluid from your chest. When the drainage reaches an acceptable level, they will take it out and then monitor you for awhile before discharging us. 


You sure love the cinnamon rolls at the hospital. Yesterday, you ate almost 3 cinnamon rolls! 
An art therapist came in the middle of the day to come and do some art with you. You decided to make a book with her. 

You hopped on a zoom call with your best friend and you two giggled like you were right next to each other. 
We ordered cinnamon rolls again for breakfast...I caught you licking the plate. You are also sporting a very cool (literally) ice pack necklace. 
And today, you got a chance to skype with your class at school. Everyone loves you so much and is praying for your quick recovery. I'm at home tonight while Dad is staying at the hospital. I'm looking forward to a nice hot shower and a quiet and dark room to sleep in. 

I'll be back to hang out tomorrow morning. 

Love, 
Mommy 

 

Monday, October 17, 2022

Day 3 post operation

I'm going to be able to get so much stuff done while Hailey is at the hospital! That idea quickly got smashed 24 hours after she came out of surgery. Each day is filled with doctor visits, occupational therapy, physical therapy, walking, going to the potty, medicines, vitals, x-rays, it's almost a constant cycle of stop and go. 

Hailey is doing great. The only tubes she's has coming out of her body is the chest tube, the IJ (it's like an IV in her neck) heart rate monitors and an oximeter. 

Getting her IV line taken out. Poor kid has so many IV bruises on her. 

We went on a few walks today and you are basically back to your normal self. You woke up with a smile on your face and I immediately knew that it was goin to be to be a better day. 


The x ray machine comes everyday. 
We made a little witch to scare the nurses on duty...hee hee. 
Spending some play time on the couch by the window. 

Talking to Nathan and Hannah at the end of the day. 

There's a good chance that you get to go home tomorrow. Everything depends on how well your chest tube is draining. 

We are so proud of you! You are a fighter, eating your veggies and getting up and doing your exercises are so important right now and you are rocking it all. 

Next post will be when we get to go home.