Going Home! and other stuff

 Hello Family and Friends,

Let me start out by saying life is life and God is good.

My temptation is to just vomit out all the things I'm thinking and feeling but let's try to recap and then deliver new information. Ready. Go.

 

Lucas got a cold

Monday 4/14 we brought Lucas into the ER at Children's hospital in Seattle. He was breathing hard. We got admitted that night. He got over the worst of his cold on Tuesday. Wednesday we was left with a very flemmy/gunky cough and needed oxygen when he slept.

FFWD a week later, this Monday 4/21 and he didn't need oxygen when he took a nap during the day and he hasn't needed oxygen since so yesterday we started talking about going home today, Wednesday 4/23 (day 10 of the hospital stay).

Because he needed oxygen while he slept a few days ago, I am going home with emergency oxygen supplies in case he needs them. He does not need to be on oxygen, but we'll have the supplies at home in case he starts breathing hard and needs support in the future, certainly until he has his heart surgery.

Lucas got a swallow study

I have had to thicken Lucas' liquids that he drinks since his last swallow study which is when he was 5 months old. There are different levels of thickness. Level 2 is nectar thickness & level 3 is honey thickness. At that time, he had to have liquids thickened to a level 2 thickness.

He just happened to be due for a swallow study TODAY. And since he happens to be still in the hospital and feeling mostly better from his cold they went ahead and completed it this morning.

Well.....so he is aspirating with his level 2 liquids that he's been drinking all this time!! Great. Not terrible, just means that little micro-aspirations of the liquid he's been drinking have been getting into his lungs and his lungs have been working harder to get more liquid out. Good thing we are catching this now. They kept increasing the thickness during the swallow study and even a level 3 thickness shows some micro-aspirations especially after he's been eating for a while and getting fatigued.

Why does he aspirate? Mostly because of his Down Syndrome which means he has lower tone in his muscles throughout his body.

What is a swallow study? they put him in front of an x-ray machine that can take video for several seconds while he is drinking and they give him a special liquid to drink that shows up super well on the x-ray.

Lucas will get a feeding tube

I am now waiting for them to bring feeding tube supplies for me to take home and then we can still go home today. They'll place the feeding tube before we go. They still want Lucas to develop feeding skills so I'll be thickening some formula to level 3 but only giving him a couple ounces at a time by mouth and then giving him the rest of his feeds through the tube. That strikes a balance of greatly reduces his risk of aspiration but still has him develop much needed oral skills.

We can still feed him table food and purees. He still doesn't have any teeth and he'll most likely need to drink formula for his main nutrition and therefore need the feeding tube until he gets teeth and is eating table food as his main source of nutrition.

The other benefits of the feeding tube is that Lucas hasn't gained weight since January and we've spoken with his cardiologist who said that the more he weighs, the better. So from now until the surgery we can make sure he gets a higher amount of calories through the formula we give him.

Lucas has heart surgery in June

Lucas was going to have his heart surgery on May 16th, but he can't have surgery if he's had a viral infection within 4-6 weeks of the surgery. Getting this cold necessitated us having to change the surgery date to June 11th. Fernando's parents are planning on flying out to stay with us during the surgery and the recovery time which is expected to be at least a week in the hospital and then 4-6 weeks after at home. I'm sure I'll be reaching out to people during that time for play dates for the girls and some support.

I have a lot of people ask if it is open heart surgery and, yes it is.

Lucas will be home

Ok, I think that's everything. I so appreciate you reading the updates here and then reaching out so i don't have to explain everything several times. ☺It feels like a lot! ☺

If you need us we'll be hanging out at home adjusting to our new normal.

We'll be keeping Lucas at home as much as possible until the surgery and limiting his exposure to the girls. We need to avoid him getting sick before his surgery as much as possible!

Thank you so much for your prayers and reaching out! My super power is communication so never hesitate to reach out and connect. It energizes me and please leave your first name if you are commenting so I know who you are! ☺

Love and Prayers, 

Christine

 

We're Home!