Mickey Power!!! - July 2019 - Once Upon a Time When DHS Opened After Sunrise - 2/27

Here's another quick mini-update on R.

The surgery was to repair a hole in his diaphragm and get his colon back down out of his chest cavity before it became injured and we had a bigger problem. Based on the images and what they had to work with in his original surgery, they were afraid the patch had come loose near his esophagus. The plan going in was a 3-4 hour surgery where they would pull his intestines out to get them out of the way and give them room to work. They were going to remove the old patches and completely re-do everything before closing him up. Due to the immense amount of disruption to his bowels, he had to go clear liquid and get cleaned out on Wednesday. They then put a tube in to drain anything that got in his stomach after surgery to allow his digestive system to recover from the shock of the operation and get back to normal function before he could eat or drink anything. With the amount of disruption they were expecting, they had told us it would be at least a couple of days before he could drink something and then we'd see about food based on how that went. They told us to expect at least a week in the hospital with a few days in the PICU.

As it turned out. the hole was just about a half dollar size spot in the middle of his patch that his colon looped up through. Gore Tex doesn't grow and they think he just grew faster than the small amount of diaphragm his patch is attached to could and it pulled it apart. Once they made the incision and saw what they were dealing with, they altered the plan. Rather than disrupting everything, they went over the top and pushed the colon back down and laid a new patch down over the top. We were kind of shocked when the nurse came to get us after an hour and a half and said they were closing him up.

He bypassed the PICU stay entirely. He couldn't eat or drink anything Thursday and kept asking for a drink. We could give him some water by sponge or let him suck on a wet cloth, and for 24 hours, that's all we did. He got upset several times Thursday night, like out of his mind screaming, hitting, kicking and biting and asking everyone for a drink. It was kind of frustrating that we couldn't give him more, given that his stomach was being pumped out and every time he sucked water out of a cloth we could watch it come right back out anyway. Friday morning the surgeon indicated that the disruption to his abdomen was a lot less than anticipated and he could tell that R was more upset by the tube and thirst than by pain or discomfort, so he ordered the tube out and said we could let him drink something. The nurse offered him a few choices and he spent Friday drinking apple juice, blue powerade and eating ice. Friday night was slightly better... slightly, but by then he was requesting food. Pizza. Mac & cheese. Nuggets. The usual. Saturday morning the surgeon visited and asked how he was doing with liquids. We hadn't had any problems and he was very gassy that morning (signs that things were moving along as they should) so he said we could order him some food for lunch. He handled it well and the peds doctor on the floor stopped by around noon and told us he was leaving it up to us, but we could go home Saturday evening if we wanted. R was still upset and would try to hide or start screaming when someone walked into the room with gloves. We kept asking if his belly hurt and he kept saying no, but was very restless and acting like something was bothering him (turned out it was sticky residue left on him by all the monitors and tubes that had been disconnected - his gown was sticking to him and he was getting mad every time he moved). We wavered back and forth, but just before shift change Saturday evening, we asked the nurse to start the ball rolling for discharge. We figured we'd have to wait a couple of hours for shift change to take place and told her that much, but she got on it and had us out the door in about 20 minutes. It was the right call. Ever since we got home, he has been so much better. He hasn't complained about any pain at all, he's been eating and drinking and doing great. We just have to try to keep him from running around and acting crazy... you know, being a 3 year old.

We had 2 absolutely sleepless nights at the hospital. We all slept all night Saturday, napped about half the day Sunday and slept all night last night. We needed it.

Again, thanks to everyone for all the well wishes for R and for the rest of us.
 
He hasn't complained about any pain at all, he's been eating and drinking and doing great. We just have to try to keep him from running around and acting crazy... you know, being a 3 year old.
He is one strong little boy! Glad you are all home and resting. (As much as you can)
 
So happy the surgery was less than you expected and your son is doing well!

How hard for a 3 yo to not eat or drink for a period of time! What a little trooper. Glad you all got some rest once you were home.
 
Very true. But still... that wasn't much room for 8 or 10 girls to swim around. Is it really that big of a deal to have a second lifeguard on duty?
Dude, I don't know. Maybe it was a liability thing, maybe it was a staffing thing. I don't know. I just know I'd hate to watch more than one kid in a pool with a tail on!
They didn't lack in the Disney service.
Good!
::yes:: They know what they're doing.
::yes::
As it turned out. the hole was just about a half dollar size spot in the middle of his patch that his colon looped up through.
Okay... so I'm no doctor... but that doesn't sound as bad as they thought?
Rather than disrupting everything, they went over the top and pushed the colon back down and laid a new patch down over the top.
So right back to the original thought no?
We were kind of shocked when the nurse came to get us after an hour and a half and said they were closing him up.
I bet!!
He got upset several times Thursday night, like out of his mind screaming, hitting, kicking and biting and asking everyone for a drink.
:( poor little guy
so he ordered the tube out and said we could let him drink something.
How much relief did you feel!
It was the right call. Ever since we got home, he has been so much better.
Yay! That's great news.
 


R sure is one tough cookie! So glad to hear that his surgery went well and he's home and feeling energetic like any other 3 y.o. Sending lots of positivity your way and still praying for R and his recovery!
 
I’m so happy to hear everything went well. I’m sorry about all the discomfort after the surgery. I can’t imagine how helpless, to want to help him, but you can’t. Hopefully things are much better now. Rest up and have a Happy Thanksgiving!
 


This was the first of multiple issues we experienced this trip with lid free cups.

Yess- even as an adult this was difficult for me. I'm all for environmentally conscious but there has to be an alternative.

48802931348_ce46eaa618.jpg

Great family picture!

We exited the theater and went to get the stroller. Right around the corner from the stroller parking area, Mom and Dad were sitting on a rock. The kids had no idea they were there, but B was the first to see them. She screamed and ran straight over for hugs.

Aww 🥰 🥰

See that puddle of condensation underneath the tailpipe at the back of that van? This was about 9 or 10 hours after our frustrations in the parking lot that morning.

The van was still running.

HA! That's karma.

I walked around looking to see if it was locked, and it appeared that it wasn’t. I didn’t touch it, obviously, but let me tell you the temptation to move it to a random parking spot clear on the other side of the lot might have popped into my head.

I would've thought the same! Good on you for being mature and not doing it.

Each kid, one by one was asked to swim out to the instructors... some with assistance and/or were given a life jacket if needed. They did this to gauge the swimming ability and comfort of the mermaids.

Smart.

They give you an opportunity to buy a mermaid tail at a $20 discount if you buy it the morning of your lesson. However, the discounted price is still $115.

Wow. The tails look cool but that's a steep price.


Adorable! She looks like she loved it.

Rather than disrupting everything, they went over the top and pushed the colon back down and laid a new patch down over the top. We were kind of shocked when the nurse came to get us after an hour and a half and said they were closing him up.

Wow. That's fantastic news!

We just have to try to keep him from running around and acting crazy... you know, being a 3 year old.

Glad everything went better than anticipated and he's back to regular 3 year old behavior. I can only imagine the stress on you and your family and the relief it was to get back to somewhat normal!
 
Hi everyone. I was hoping to catch up on my replies and post another update before we got here, but I just wanted to share that R had his surgery this morning and it went well. He has tubes everywhere that he wants to pull out and he isn't allowed to eat or drink anything for probably a couple of days so they can make sure his bowels aren't irritated from disturbance and working as they should. He's rocking on but keeps asking for water, juice, fruit snacks and ice cream. All we can do is give him a few drops of water on a sponge so it is a struggle. Thanks for the prayers and positive vibes for the little guy.

This is great news and even better than everyone hoped! So happy for you, and especially Little Guy that all went well and you're home for a family Thanksgiving.
 
Dang it, I'm getting behind again. I think it has been about 2 weeks since I've logged in here. Been catching up at work, busy at home and doing the holiday thing. R is doing awesome and pretty much back to normal. His steri strips are coming off now, but he still refuses to take his shirt off.
He is one strong little boy! Glad you are all home and resting. (As much as you can)
::yes:: Yes he is. Thanks!
So happy the surgery was less than you expected and your son is doing well!

How hard for a 3 yo to not eat or drink for a period of time! What a little trooper. Glad you all got some rest once you were home.
It's hard reasoning with a 3 year old on a good day. In this case, it was just unbearable.
Okay... so I'm no doctor... but that doesn't sound as bad as they thought?
Right.
:( poor little guy
It was rough.
How much relief did you feel!
I was too tired to feel anything. :rotfl2:
Yay! That's great news.
::yes::
Glad you are all home and resting up. Little guy sounds like a superstar dealing with everything. So tough on you all :hug:
He did well through it. It is good to have that behind us.
R sure is one tough cookie! So glad to hear that his surgery went well and he's home and feeling energetic like any other 3 y.o. Sending lots of positivity your way and still praying for R and his recovery!
Thanks!
I’m so happy to hear everything went well. I’m sorry about all the discomfort after the surgery. I can’t imagine how helpless, to want to help him, but you can’t. Hopefully things are much better now. Rest up and have a Happy Thanksgiving!
Thanks!
Yess- even as an adult this was difficult for me. I'm all for environmentally conscious but there has to be an alternative.
::yes:: I mean carrying a tray through a crowded quick service restaurant is nerve wracking enough even with lids.
Great family picture!
Thanks!
HA! That's karma.
::yes::
I would've thought the same! Good on you for being mature and not doing it.
Well, I think that's a compliment. I'm rarely called mature.
Wow. The tails look cool but that's a steep price.
::yes:: They were neat, but for something she'd likely destroy within a week or 2 it was bit much.
Adorable! She looks like she loved it.
She really did.
Glad everything went better than anticipated and he's back to regular 3 year old behavior. I can only imagine the stress on you and your family and the relief it was to get back to somewhat normal!
Thanks!
This is great news and even better than everyone hoped! So happy for you, and especially Little Guy that all went well and you're home for a family Thanksgiving.
Thanks!
 
Well, we didn't see any adults do it, but I don't believe there is an age restriction of any sort. I've heard of adults doing it. And there were a couple of girls that were probably 11 or 12 when B did it so Gia certainly isn't too old if she wanted to do it!

This is good to hear. Gia is only 9 now.
 
My heart was breaking for y'all when Little guy couldn't have something to drink or eat. It's great that his outcome was better than predicted and he's on the mend.
 
I'm so glad R's surgery was less intense than they anticipated, and that he recovered so well! I'm sure that was a huge relief for y'all as I'm sure it was pretty stressful anticipating that surgery. Best wishes for him to continue to heal!
 
Just caught up from the last few months of being away. Quite the frustrating day at AK! But mermaid school looks awesome - I had no idea that even existed. So glad that R's surgery went well and he's getting back to normal - how difficult for him and your family to cope with the restrictions. Hope you all have a happy new year!
 
Hey, Andy. Just caught up with your latest update.

We were kind of shocked when the nurse came to get us after an hour and a half and said they were closing him up.

So...that's great!

He bypassed the PICU stay entirely.

Also great.

He got upset several times Thursday night, like out of his mind screaming, hitting, kicking and biting and asking everyone for a drink. It was kind of frustrating that we couldn't give him more, given that his stomach was being pumped out and every time he sucked water out of a cloth we could watch it come right back out anyway.

Oh man. I can imagine that must have been really hard.

Ever since we got home, he has been so much better. He hasn't complained about any pain at all, he's been eating and drinking and doing great. We just have to try to keep him from running around and acting crazy... you know, being a 3 year old.

But that's excellent! I'm glad to hear he did so well! Hope you guys had a great Christmas.
 
I had been sort of crazy busy and since there wasn't a change in the title i missed this update until now. I'm glad to hear R came through alright, even if he was a bit ornery.

You folks are saints for how you've handled everything!
 
Hi everyone. I'm sorry for my almost 2 month absence from the boards. We had a couple of out of town trips for weddings, a couple of conferences and then the holidays. I actually took a couple of weeks off to be home and pretty much just disconnected from the internet during that time in order to avoid work, and to be a little more focused on spending time with the kids. So that said, I've been catching up at work and finally now starting to play catch up here.

In life news, the kids are doing great. L is playing in 2 different basketball leagues right now so our life is hectic on the weekends, but he loves playing, and frankly, it's one of the few things he wants to do aside from sitting around playing video games. B is playing in 1 basketball league and has tumbling one night every week so we're usually on the go. R has been doing awesome since his surgery and in follow up visits with the surgeon everything looks great. However, we have noticed some extreme behavior issues with him since his surgery. He's been very quick to revert to screaming uncontrollably and trying to bite and pinch, much like the night he was in the hospital, if things don't go exactly the way he wants.

So, with that, I'm trying to catch up on everyone's TRs and then I'll get back to mine. Unfortunately, I lost all my notes due to some technical difficulties, but I do have some pictures and some stories I remember, so I'll do the best I can with what I have to work with to finish up.
 
I missed the November surgery update, but I'm so happy to hear it was a simpler fix than the doctors initally thought. Glad to hear things are going well for the family. Busy is good. Hang in there!

Look forward to hearing more about your trip when you are able to get to it.
 
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