Author: Caitlin

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ETV Surgery

Endoscopic Third Ventriculostomy (ETV): A surgical procedure to treat hydrocephalus by creating an opening in the floor of the third ventricle. The opening allows the cerebrospinal fluid to drain from your child’s brain.

This is the surgery Ford had done on Friday. He had an MRI on Saturday to ensure the surgery is working properly and it is!!!  Because of Ford’s age, there is a 70% chance of this procedure staying successful. If the fluid continues to drain for 6 months, there is a 99% chance he will not have to have surgery again. After a year of draining, it would be extremely rare for Ford to ever have surgery again for hydrocephalus. My prayers were answered that he came back to me & now my prayers are that this surgery continues to work. ❤️

Update from Sunday: Ford was admitted to Primary’s on Sunday for Ilius. Ilius is when the intestines are “stunned” after a surgery & they do not work properly. He was observed for over 24 hours & we worked on getting his bowels moving again. Also, his pain is back under control. He was discharged today & we are home. He is doing well and slowly getting his appetite back. He is having severe separation anxiety due to being whisked away for 3 days of procedures. He goes through waves of pain & discomfort but shows glimpses of his sweet personality. I’m so thankful to call this sweet soul my son!

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Post Op: Night 2

Yesterday, during the day, Ford seemed to be improving! He was tolerating Pedialite by mouth and even got down 4oz of formula by evening time. Pain seemed manageable. We were discharged around 6:30pm on Saturday, August 17th.

We were home & working on getting Ford some pain meds down when everything flipped upside down again. He began vomiting (a lot and frequently). He was unable to keep anything down at all – including pain meds. I spoke to the neurosurgeon on call and she said if he couldn’t tolerate water to bring him right in. I gave him 1oz of water and he projectile vomited almost immediately.

We’ve been at Primary Children’s ER since this morning. He’s had labs, a new IV (after 3 failed attempts), and x-rays done. We don’t have any answers yet but one of the doctors believes his intestines might not be working properly which can happen after a big surgery. He will most likely be admitted for observation but we just don’t have any answers yet.

Watching the life drain from Ford (again) is heartbreaking. Not being able to comfort my baby or fix the problem is gut wrenching. I’ve never felt so helpless as I have during this experience.

**We also saw his incision for the first time today. It’s bigger than I had imagined.**

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Post Op: Night 1

For all the worry I had about Ford’s surgery I never prepared myself for recovery and what that might entail.

We were taken to the recovery room to meet Ford as he woke from surgery. As the door opened, I could here a baby crying hard & loud. I knew right away is was my baby. It was my Ford. They asked me to swoop in and hold him. I was extremely overcome with emotion as I held my sweet baby; he was ghostly pale, crying from so much pain, stitches in a spot that once had hair, and he was vomiting so much. We stayed in recovery for about 45 minutes before being wheeled into the room we will stay for the next few days.

The hours to come were/are excruciating for me. To see my baby so pale. To see him projectile vomiting for hours on end. To see his limp body struggle to make sense of what is happening to him. And to see him convulse in pain, only to be able to hold his hand and tell him help is on the way. His oxygen levels continue to drop. We’ve had to change his pain medication plan 3 times to get his pain under control.

I was not prepared for this. Idk what I thought recovery would be like, but I never thought this. Praying his body is able to continue to fight and that this surgery works so that he doesn’t have to go through another.

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The Eve of ETV Surgery

Anxiety is weird. Depression sucks. The combination can be unbearable.
 
My heart has literally not stopped racing since Monday. I break down & cry over the most trivial things. Yesterday I cried because Ford will lose a few curls when they shave his head for surgery… like get a grip Caitlin! I am in a constant state of panic. Will he be ok? Will he still be my perfect, happy baby? Will the surgery work?
 
The overwhelming anxiety tells me to create ALL the lists so I don’t forget anything. And makes me add the silliest things to my list. For instance, tonight I detailed my car because Ford needs a clean car to go to & from the hospital in. 🤦🏻‍♀️ And the gut wrenching depression manifests in my mind coming up with the most awful, worst case scenarios.
 
I’m not telling you this for pity. I’m telling you this because this is my reality and that’s ok. I am constantly told to be strong for my baby and guess what? I AM DAMN STRONG! But even the strongest of people have weak moments. Tomorrow is a big day for my baby and it’s ok for me to have big emotions. ❤️
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Chicken Peanut Satay

I am obsessed with Thai food.  Our friends own a Thai restaurant in West Jordan, Utah and I could honestly eat there every freaking day.  On a random Thursday, the craving for Thai was strong and it just so happened I had all the items on hand to make an easy version of chicken peanut satay.  It. Was. DELICIOUS.  I really didn’t even want to share but of course I did, because I’m nice like that. Hopefully you will enjoy this easy version of chicken peanut satay

Ingredients
1 Package Rice Noodles
1 Jar Peanut Satay Sauce
1 – 2 Tbsp. EVOO
1 – 2 Cups Cubed & Cooked Chicken
**Add in veggies of your choice to make this dish extra amazing
**Add a touch of soy sauce to add some salt (I love soy sauce)

Let’s Cook
1. Cook rice noodles according to package, strain, and set aside
2. Cube & season chicken with salt and pepper
3. In a large skillet or wok heat EVOO on medium heat. Add chicken and cook until no longer pink
4. Stir in peanut satay sauce TIP: I suggest adding in the sauce slowly and then doing a quick taste test to ensure the peanut sauce isn’t too overpowering. Continue to add sauce to your liking.
5. Add rice noodles to skillet and stir with tongs until sauce has coated all the noodles
6. ENJOY

**If you are adding veggies, add them in before the noodles. I used “broccoli crack” in mine. You can find the recipe for that here
**If you using soy sauce, top off individual serving with a touch of soy sauce to give it a salty bite