Hope

Hope

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 :)

Tuesday, January 20, 2015

Hypovolemic Shock

I wish I still blissfully didn't know what that word meant.

I was all ready to update the blog this past weekend about how the boys had started basketball at the YMCA, and they just loved it, but we've had quite the turn of events that have totally shaken our family to the core.
Brady was sick Monday evening (January 12th), and had been up all night vomiting, with a little diarrhea. He was really sick, but his harsh symptoms ceased after about 8-12 hrs and then he was much better the next day.
We got a call on Friday at 3:30pm to pick Jax up from school because he had started to vomit. We were pretty sure he had gotten Brady's GI-virus, so we felt confident to know what to expect and that that the next 8 hrs would be rough, but it would pass quickly after.
We realized he was getting exhausted fast from the vomiting and was laying on the bathroom floor. I called the doc's office knowing they were about to close, but was hoping to get some guidance. The nurse told me she suggested we take him to the ER or Urgent Care, but she'd have our pediatrician call shortly. So, we actually packed a bag and got Jax ready to head out.
The doctor called back and we decided to keep him out of the ER and try to treat him at home with some Zofran to cut the vomiting down and try to get sips of water.
We did that, and it was working. His vomiting came down and he was constantly taking sips. He was trying to chug the water, which made him sick, so we had to limit him to sips.

Our pediatrician called back around 9:30pm to check on him and I reported that his vomiting was coming down, he was taking sips, but diarrhea had really picked up. He was responding to me each time I changed his diaper. She said to stay the course and to start a Pedialyte pump through his feeding tube first thing in the morning.

I kept changing his diaper every half hour, if not sooner and Jay took over by midnight. Jay changed his last diaper and watched Jax poo all over the bed with his eyes wide open. That definitely was not normal. Jason brought Jax into the bathroom and realized he wasn't responding to him but his eyes were open. Jason came to wake me up and told me Jax wasn't responsive to him.

We rushed in by him and within a matter of moments he made some very odd head jerking movements and went into a full seizure. I have no idea how much time passed between me opening the doors and turning on all lights for the paramedics, but I do remember Jason calling neighbors and a police officer holding me in the hallway as I sobbed watching the paramedics try to stop Jax's seizure.

They weren't able to stop it, so they scooped him up and got him in the ambulance. I jumped in and Jason said he'd be right behind us once he banged on the neighbor's doors to take Brady. Oh poor Brady in this whole situation. Thankfully we had put him in the guest room that night so we could sleep next to Jax to care for him - which oddly we've never done since they've shared a room the past two years. It saved Brady from some of the horrible scene, but he came out to go into our room as they were getting ready to get Jax out of there, so I'm sure he saw Jax seizing on the ground :(
while in the ambulance they checked his sugar and yelled out some number in the 20s and suddenly the ambulance went FASTER. I've never had any clue what sugar numbers should measure up, but I realized quick that his number was not OK.

The ER was able to get Jax resuscitated about 20 minutes after arrival, so his seizure lasted more then 45 minutes (that just seems like a lifetime).
We were transferred to ICU and remained there until today (Tuesday) where we are now on the Endocrinology/GI acute care floor.
Jax was unconscious until 1am on Sunday morning. It took him a full day to become really aware/conscious of everything, but things quickly progressed on Monday into Tuesday. He was upset to find out he lost a day (was adamant it was Friday when we told him it was Sunday...), but he's doing well. His official diagnosis so far is Hypovolemic Shock with a hypoglycemic seizure. Any further diagnosis' would be to WHY that happened.

He wasn't able to hold his head up on Monday, and with OT and PT help, he was already able to take a few steps on Tuesday! So he is progressing quickly now.
Jax has been very emotional and has cried each time he's received a phone call, card or gift - it's heart warming and breaking all at the same time.
He only remembers up until about midnight that night it all happened. He asks each morning when he wakes up what day it is. I think he fears he'll suddenly lose another day or two.

Brady has been supported so well from school. We've been picking him up early each day and bringing him to Jax so they can be together. Brady seems to be getting better with it all too, but I think it will take quite awhile for them both to emotionally recover from this.
I'm pretty sure Jason and I are forever changed and have been trying our best to keep it all together as much as possible.

We're just waiting on labs to come back now to figure out WHY this happened. There's a few possibilities or there's just the idea that the most imperfect storm happened to him that night. Tell will tell while we wait and rehab Jax back to himself. He really has started looking HIMSELF again today!

Jason and I have felt so much guilt over the past few days feeling like we didn't support Jax enough that night. One of the ER docs heard us saying this and assured us that if we brought him in earlier in the night, he would've not been treated for asthma issues and the he would've possibly only recieved a saline IV - which would not have helped his blood sugar. So.. we're trying to accept that this insanely fast 12 hr acute illness was not something we could've known to handle or treat. We will forever NOW treat him differently, especially knowing the final word on what it all is.
I'll update when we get some answers and a plan of action. I had some photos of the first 2 days on this computer, but will get the photos from the last two days, which are MUCH more Jax being himself, so just know he's better then what you'll see below.
Please send him prayers or good thoughts if you can...










Waking up and showing the first hint of a smile.








Wednesday, January 7, 2015

Flu 2.0, 3.0 and 4.0

Everyone has been hit since I last posted. Hence, the lapse in posting!
Jason had been hit about 5 days after Brady started, then Jax last weekend (which was 5 days later as well) and I followed closely behind Jax. Everyone has done fairly well with it, but it's the lagging cough that makes the house sound like it has the plague!

I'm happy to see Jax doing well given our fears for him, but since he had Tamiflu in system before getting it and also receiving it on the first day as well as steroids (a fun Urgent Care run on Sunday) he's hanging tough and only fevered for one day. The awful coughing and non-stop pulse-ox checking for Jay and I the first night definitely pulled my immune system down. Well, the massive coughing in my face from the little guy is what really did me in!

I'm following the exact path of Jason of not being able to move for the first 24 hours - which if you know Jason and I, being bed-ridden is Hell on Earth to both of us. I was able to move on day 2, but not much. Now on day 3 I'm ok to be at my desk and showered and thankful I work from home so I can look like death and still work. The morning and evenings feel like a truck hit me. I feel more nauseous then Jay or the kids did, so that's odd, but they all had more sore throats than me, so maybe we just traded off a symptom!

Now to try and not write a book of the last 10 days...
We had a lot of board game playing, movie watching, cooking and guinea pig playing days over the past days. Jax had his 6-month followup with the Feeding Team and GI specialist last week Friday. The appointment went as expected since we knew Jax hadn't gained much. He seems to be growing vertically only!
Jax weighed in at 33.8 lbs (ouch) which was a slight gain, but not nearly what we had hoped for. We were interested to see how this appointment would go with Jax being in school full time now. They said this is very common in tubie-kids when entering school since they have a new routine and typically don't eat much with all the commotion and little time allotment for food. So, after I got some counseling that we're still doing everything we can... (insert the look of tears on my face), we came up with a game plan:
1. Jax will drink high calorie milk with his morning snack at school instead of water like all the other kids.
2. We'll add peanut butter, cheese etc to all cracker or veggie snacks we send.
3. He'll start his hunger-inducing medication back up and take it 3x/day for an extended period of time.
(So I need to figure how to get that squared away with the school)

The good news is that Jax's eating skills are getting better with the variety of foods he can eat. The problem remains with the volume that he intakes. So unless we can find ways for him to increase that, he'll require more tube feedings as he keeps growing taller, so hopefully we can this under control!

On the bright side of things, the boys are back in school (Jax missed Monday) and they're so happy to be back! We're surprised they had school today with the -30 windchill, but hey, they got there safe and Jay and I are able to get some much needed work done. We'll see about tomorrow :)



The boys at a bowling birthday party. Jay came down with the flu this night - gah! Just when we thought it was gone!


Who DOESN'T like to be woken up like this at 6:30am on the weekend? The boys showing me their bowling alley they made out of Legos...

Jax-Man and his 6-month photo at the Feeding Team!
The size of this bottle made me laugh - his hunger-inducing med. It's actually for allergies, but works on hunger for feeding-patients.

The boys with cousin Drew watching basketball the day before Jax was hit with the bug.

And he's down.

He was a good bed mate of mine when I got sick. Who doesn't want to share a bed with their sick kid and their light saber?

Monday, December 29, 2014

Christmas 2.0 with the flu

We were hit. Poor Brady started fevering a bit on Monday night, then it came around Tuesday night higher around 101.  I knew something was up because he'd stop playing and ask me to cuddle on the couch with him. Which isn't TOO different for him, but he would literally just stop playing and beg for couch-time. On Christmas Eve-morning he hit 103 which is very unlike him, so I took him to the doctor. Sure enough, he tested positive for Influenza A, blech. He ALMOST made it out of the school the week before without getting it!

He was put on Tamiflu and told to not go around anyone until 24 hrs after his fever stopped, so we knew right away that Christmas day plans to go by family would have to be canceled. The doc put Jax on Tamiflu as well to try and prevent the severity if he contracted it as well. She was a bit concerned about him getting it and reviewed the protocol with him in case he started to show symptoms (since it's a respiratory infection and he has asthma).

After night #2, the Tamiflu made Brady's stomach 'burn' and he was up all night moaning and trying to vomit. The nurse the next day said it was our call to stop it if it was creating worse symptoms for him. The drug worked fine with Jax since he was fed his thick milk all night through his tube along with a dose of Zofran. The doc said Jax had to continue no matter what, which thankfully wasn't an issue for him.

The good news is that Jax NEVER got it, WHEW. Brady perked up fast after some medication and Ibuprofen. Thankfully he didn't go down too hard. We have to wonder if his nasal vaccination wasn't as effective as Jax's shot this year, although the doc said this year's vaccines aren't working against Influenza A very well because the strain mutated. (*Children with asthma can't get the live-nasal-vaccine, so that's why they get different vaccines.)

We were able to enjoy some Christmas time together just the four of us, but were also lucky enough to have Jay's parents and his sister and her family come Friday to celebrate. Thankfully we didn't have 'travel' plans out of state this year like we did the last two years!


Waiting for flu-test results. I sat holding him like this for about 20 minutes.

Jax and Daddy trying to stay occupied Christmas Eve night. Thankfully Uncle Adam sent LOTS of games this year!

Some dinner, Tamilfu, Ibuprofen and a bath perked this kiddo up to put cookies and milk out for Santa. Jax is being.. very much himself - always turned up to the highest notch.

Christmas morning.

Brady being... Brady. Santa brought him a guitar, lucky cat.

A jumbo remote monster truck with tickets to the show from Mommy and Daddy.

Fever gone and family visiting the next day - these four cats were in an intense game of SORRY!

The BOYS

Nothing keeps Jax down when getting neb-treatments.

Family!

An intense game of tic-tac-toe between Aidan and Jax at breakfast.

Jay looks HAPPY cleaning out cabinets, right?! We finally got rid of our old useless tupperware!

Monday, December 22, 2014

Christmas 1.0

The Christmas break is in full swing!
We had a family Christmas party this past Saturday for my side of the family. We picked up Marley and headed over to my Grandma's new assisted living home for a visit first.
We attended the family gathering at my Uncle Dave's house and we had such a great time. Brady had decided earlier that day that he was going to tape a piece of paper to his face and be Santa. The entire day.
And he was.
So, Jax had the elf hat on and Brady was Santa - they crack me up.

Both of the boys had started a cough on Tuesday night, so I was wondering how well they'd feel by Saturday for the long day/night of driving up to Green Bay and attending all the festivities. Brady's cough went croupy on us, but some steroids helped. Jax of course just needs round-the-clock neb treatments, which is a bummer to travel with a neb-machine, but it is what it is. They did pretty good, but I've noticed Brady has ramped back up a little bit with a cough and not feeling the best again since Sunday night (hmm).

So far, the boys are doing ok with being home while I work. Thankfully they only have to deal with that for one more day and then Jay and I plan to be off the rest of the week.

For the first year ever, we have Christmas Eve to ourselves at home, so we're going to try and have it be relaxed, yet festive! Planning is in the works... maybe we'll actually get to CHURCH this year!

Every parent can relate... this is just one of my kid's backpacks exploded on the floor after school.

Guinea pigs - the perfect asthma-pet.

Our daily veggy-delivery to the piggies.

Slightly excited for their last day of school before the break.

Great Grandma Carol with Marley and the boys.

Some great ornaments from Grandma.

She was so happy the ornament she gave me matched me that day.

Cousins!

Marley and the elves.

The boys "helping" during the gift exchange game.

Cousin Amanda helping Brady re-tape his paper beard.

Ohhh to be 6 at Christmas time...