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 

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 

 

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. 

 

2 Days Post Surgery

 Hailey is progressing so well. We just completed 2 days in the ICU and today she got stepped down from intensive care status into not as intensive (I'm sure there's a technical term for that, but I can't think of it right now.) Everyone is blown away on how quickly she is recovering and hitting her goals a day before schedule. 

I went home last night to sleep while Steve stayed at the hospital. I came back this morning with some pancakes and corn soup. 

She had some apples juice before I arrived and was able to keep it down so the nurse gave me to ok to give her anything she wants to eat. She scarfed down the pancakes quickly. 

Hailey then took a nap, got out of bed and walked around the hallways for about 5 minutes and watched a movie before the grandparents came to visit. Her general mood is: grumpy. 

She's constantly requesting ice to help with her chest pain and to keep cool. The room's AC is out, but it's not unbearable. The room is around 77 degrees, which is what we keep our house at anyways. 

We then tried to do some craft or coloring but she lost interest after the first few minutes-very unlike her, but I would probably not be in the mood if I had a constant headache. 

You can probably see that Hailey has lost a lot of tubes and connections. She still has her chest tube to draw out any fluids from her chest cavity. The only medication she is on is Tylenol and a diuretic. They are keeping an IV line in to draw blood for labs. 

Hailey is finding out about how hospital food compares to my food. 

Hospital food gets 1 star. 

My food gets 3 stars. 

So after she gets stepped down out of the ICU, it'll be another 3-ish days before she gets to go home. The doctors are guessing Tuesday, possibly Wednesday and a slim chance of going home Monday evening. 

Well, that's about it for now. No news is good news. 

Recovery, the first 24 hours

7:30 am We went into Hailey's room in the cardiac care unit around 5:45. We were warned about the breathing tube and the other tubes coming out of her body. Steve and I went to get some dinner since we were told that it would be a couple of hours until she would wake up. She's on a bunch of pain medication, has an IV in her neck for meds and another on her wrist for blood draws. She's also got a catheter and a draining tube coming out of her body. She's drowsy and going in and out of sleep. 

When I returned, (Steve went home to sleep for the night) I was told that Hailey woke up. As the nurse was updating me, Hailey's little arm waved a little uncoordinated like a zombie would wave, which kind of startled me a bit. She then tried to pat her chest and let us know that her throat was hurting. The doctor determined that she was awake enough for the breathing tube to be removed and when it came out Hailey started to talk a little. She's on Tylenol and morphine to help with the pain. 

Around 11:00 the nurse, Britt, started to let Hailey have some ice chips and a few small sips of water. But this caused Hailey to throw up 10 mins later. They increased her nausea meds and throughout the night tried ice chips at 12, 1, 2 am- Hailey thew up each time. We eventually fell asleep for the night. Hailey, you woke up around 6, had some ice chips, thew up and asked to watch cartoons. And at 6:30, I got up when they said they were going to try a popsicle. You picked cherry, but they only had grape left. 

20 mins later you lost all the popsicles again. The nurse said that it's common for kids to be nauseous 24 hours after being under anesthesia, especially big kids like you. 

For now we chill and watch cartoons. 

1:30 pm You've been sleeping a lot. Morphine totally knocks you out. The child life experience nurse came by to get you out of your bed and into a recliner. You didn't love the experience, but when told that sitting up will help you get better faster, you were ready to start running. 

You still complain about your chest hurting, especially when your pain meds are starting to wear off. But you stood up today and walked to give me a hug. 

You got a grape popsicle as a reward and then you conked out for another nap. 

You are doing a great job being a trooper! 

4:30 pm The popsicle stayed in your system and so the next thing to see is if things will stay down without nausea medication. The occupational therapist came in around 2 and got you out of the chair, you said you needed to go potty, so the nurses made it happen by untangling all the connections and pushing all the machines to the bathroom. You were able to walk about 20 feet with some assistance. Your goal is to work up to walking around the hallway tomorrow. 

Now you are asleep again and back in bed. We will try to get you out of bed again one time before tonight. 

We are so proud of you! 

 

Surgery Day

We left this morning at a comfortably normal time of 6:45, which sure beats a 5:00 departure time. The car ride was quiet, soft radio music filled the still air, we drove into the calm of the sun rays as they barely peeked over the horizon. 

7:30 am We arrived at the hospital. We were quickly assigned a room and we waited. 

Hailey watched TV as nurses came in and out. We spoke with the anesthesiologist and he explained the whole process to us. Hailey's friend's mom also works at the hospital, so she came by to say "Hi." 

At 9:30 Hailey was given a dose of Versed and by 9:45, she was feeling very loopy. 

She was scheduled to go into surgery at 10, but Dr. Frasier was held up for some reason and she was admitted a just a few minutes later than scheduled. According to the nurses, that's just how they roll int he cardiac unit. 

We gave her our final hugs and they wheeled her in. For the first time, I felt butterflies in my stomach. 

In the meantime, we were assigned a waiting room to hang out in. At 11:15 the nurse came in and said that Hailey is responding well to the anesthesia and they will get started soon. Our next update will be at the surgery start. 

Around 12:30 The nurse came in again to let us know that the first incision has been made. Interesting fact: Even if they were to just open her up and close her up, without doing anything to her heart, it would be a 4 hour procedure. There's a team of 10+ people working on Hailey directly and who knows how many other people indirectly involved. We are thankful for modern medicine and this opportunity to get her heart fixed. 

1:45 Update. Hailey is hooked up to the bypass machine and things are going well. 

3:15 Update. Hailey is off the bypass machine. This means the procedure is completed, they are doing a final EKG on her to make sure everything is working ok and the surgeon should be closing her up and scrubbing out in about 45 minutes. 
 

3:37 I love when people under-promise but over-deliver. Dr. Frasier came in personally and talked to us about the procedure. She's doing well and things look good. We had a few questions for him: 

Will Hailey need a pacemaker in the future? Likely not, but not 100% 

Will she need to continue her atenolol? Debatable, but it will be up to her regular cardiologist to decide. 

Are they able to see the cause of the HCM? They have the tissue that they cut out and will conduct a biopsy. He asked the nurse to tell the lab to personally call him after they perform the biopsy. 

Has the scar tissue gotten worse? No, it was not touching the aortic valve yet. 

How long until we find out how turbulent the blood flow is?  It is already not turbulent anymore. The blood is flowing out smoothly. 

Anything unexpected come up during surgery? The tissue that he cut out was very fibrous in nature. He described it as "gristle-y." He showed us a picture of what he cut out -- a little piece of tissue about 1 inch in length along with some white-ish membrane. 

So, they will be getting her all ready to go into her room to recover. We won't be able to see her until about 5ish or after 5. They expect her to be semi-conscious tonight. 

Now the tough part begins: restraining a toddler with a fixed heart from being too active.