Sunday, January 25, 2015

Home and re-adjusting

Jaxon got better each day while on the Endo-floor. His tests all came back normal, which is giving us the result that an imperfect storm happened. The specialist (who happens to be Jax's actual Endo specialist) said that this is technically a complication yet from the flu that he had the week prior (which we felt he did so well with) and that he was still systematically healing from it. He had a week's worth of Prednisolone for the flu that he had stopped about 4-5 days before this, so that always leaves your immune system a little deflated, he is growing taller but not wider so he fell into the malnourished category for weight again (which we knew from the week prior at the feeding clinic and had him on a new regime) and he came down with the stomach bug. So, he just couldn't beat this stomach bug - his body wasn't prepared for it. He lost too much fluid/salt causing Hypovolemic Shock and then his blood sugar plummeted causing the hypoglycemic seizure.

We were able to get Jax medical attention at the first sign of the seizure thankfully, so he was given treatment in time to come back. He hasn't suffered any neurological deficits or motor function and snapped back without any IVs after 8 days. If Jason hadn't been up changing him at that moment, the outcome could've been very different, so for that, we are ETERNALLY grateful for that timing.

We came home Saturday afternoon and have been re-adjusting back to normal.
I think I thought that once we were home, settled and had a night of sleep in our own beds, that everything would be back to normal.
We're struggling.
Jaxon himself is doing fine. He is back to his smarty pants wit while laughing, yelling, running and being his great little self. Brady has his partner in crime back. We took Jax up and down the stairs a few times and he is completely independent once again. He does suddenly stop, hug me and say he loves me more often, so I know he feels it too.

Jason and I still feel it though. Being back home at the scene and trying to just go about our day taking care of the boys and the house... it's odd. It's hard to explain, but it's odd. It feels haunting. Like this constant reminder that it can happen randomly and fast.
I have such mixed emotions about it because I am unbelievably grateful, thankful and humbled by it all.
We are so BLESSED.

So, we're both trying to not linger on it or let it ruin our healthy days with these little trolls, but wow... it's really taken us both aback. Almost like we were shoved and we've been stumbling backwards this entire time, yet not falling.
I'm trying to give myself a break and realize it literally just happened. But closing my eyes makes me relive... and go over the details of what was different so 'next time'... yet, there shouldn't ever be a next time we were told. Although, we were sent home with a new device to check, just to make sure. And IF it happens again, we'll do more testing... (sigh)
Neither of us feel like ourselves yet, so I'm hoping with more time and normalcy, we will. I mean... did all that seriously just happen??

I was supposed to be starting a new position in a new division last Monday (my 'meetings division was sold and I was kept for a different division - luxury vacations). I have to find a way to be able to focus on my new role - thankfully they were understanding it would have to wait a week - but that's all about to start up tomorrow.  All new programs, systems, clients, reports etc etc - gotta get my game face on!
Jason hasn't had a normal full week of work in almost a month between all four of us having the flu over the holidays and then this.
We need some 'boring', although it's been kinda boring with all the sickies!
Jaxon will have a physical with our pediatrician tomorrow to be cleared for school, and his teacher is going to meet us at our home to have a meeting about all of this and how school will go for him.

I'll update how the week goes for all of us. I have much better photos for you to see of our healthy little elf!

Jason and Jax watching the Packer game Sunday night. Jax slept through most of it and awoke for the end - the roughest part!

Getting his hair washed and not quite himself yet on Sunday.

Getting his Central line and cath out on Monday because of the high infection possibility with it's location. Jax was SO upset during this procedure (he's scared of tape on his skin) and the stitches holding in the central line were tight so it ripped his skin. He received this gift DURING the procedure which helped to divert his attention.

They wrapped him up like a burrito with warm blankets after this and he slept like this for over 4 hours.

With all that sleep, he had a burst of energy for an hour just in time for a visit from Brady for some video games. He woke up to a balloon party which made his face light up. The gift shop opened this day :)

A tutor from the hospital-school was working on letters/numbers/reading with him.

Jax had an OT for the week that worked on strengthening his motor skills. Here he worked on sitting up and reaching for extended periods.

Doing his activity 'homework' to work on that fine motor skill!

More OT homework through the week.

This is just funny. Shannon brought a monster truck hat that was a big hit.

Because it he wore it ALL night, even through dinner :)

First walk down the hall with his physical therapist!

He's just realizing we're up on the 11th floor and can see a lot of the city.

A surprise visit from his and Brady's speech therapist! She brought tons of pictures from the kids and some gifts from the teachers, office ladies and the principal! They were so embarrassed to see a teacher from school OUTSIDE of school! Jax received a video each day from his class doing cheers and sending love - they were SO supportive!

Just one of the girlfriends he made at the hospital, this is Nikki, one of his fav nurses!

Jax is living it up here. I however am clearly over life. We were on our way to do some art, and we were told Jax needed an EKG since his potassium level was high. Everything was normal and they assume it was a false blood reading since the finger was squeezed hard for that sample.

LUCKY Jax got a visit from ex-Badger and current Packer player Scott Tolzien!

He found out Jax had a twin so he included him in on the gifts!

He gave me a hat :) He could tell I was fumbling to put my unwashed hair back as this famous athlete was in the room all of a sudden - kinda hilarious!

This was the photo that the photographer emailed me that they may use on their website - how HAPPY does Jax look??

Sunrise by Miller Park the morning I knew we'd be discharged since Jax did well that last night...

On our way!
Sunday... spoiling the boys. Jason turned in their old Play Station (which was his from decades ago) to an updated one with some games. Jason told the boys how proud he was of their bravery last week. I was cooking dinner while they were doing this. We certainly had a nice evening of normalcy :)


Matt & Shana said...

cheers to normal days!! HUGS!

Stacie said...

I have 28weeker twins, both who have lasting effects from their prematurity. I been following your story for a while, but I don't think I've ever posted.

I just wanted to say that my heart goes out to you and your husband. I can totally understand how hard it is to get back to a "norm" when your whole world has been turned upside down from an experience like what you had. While we have not experienced what you did, I do know what it is like to see my boys take swift and dramatic turns for the worse and fear for their lives.

Anyway, all my best to you all. If you're like us, it will take some time, but you will eventually find your footing. Many hugs.