Monday, June 18, 2018

Awareness Walk in Michigan & Axi update! RePost

I'm sorry! I don't know how some of my posts reverted back to drafts. :(

Hello, happy summer!
I'm still short on fun sewing/embroidering projects, sadly.
If you had a baby at home that could melt your heart with a look or even a tiny sigh, you would have a hard time, too! =D

Mostly, I wanted to fill you all in about a couple of things..

Firstly, Axel continues to be amazing! He is almost 7 months old (I have NO idea how that happened!!) and he is ALMOST back to 15lbs (he lost almost 2lbs when he was in the hospital). He's learning to clap and it is SO cute!! I started teaching him by letting him hold my hands while I clap, clapping his hands and also, he LOVES when we clap his feet =D -I hold his hands to his ankles and clap them, it's really funny! He is also smiling a lot more now and we can even get a laugh out of him once in a while! We continue to talk with him and let him feel our vibrations. We have some very interesting conversations with him! He is so vocal these days, you would never even know that he can't hear!
He's also discovered how awesome the iPad and YouTube are! There are some GREAT contrast videos for babies! We also thought he might enjoy some classic Disney, as it turns out, he just LOVES Donald Duck. haha- who doesn't!?

I'm going to get back to the update on Axel in a moment, first I wanted to mention the Hydrocephalus WALK August 26, 2018 in Novi, Michigan (click this link to view).
Our team is AxelOliGests (if you search for Axel on their website, it brings him right up<3). We are really excited to be able to support our extraordinary boy and everyone else whom suffers from this awful condition! 
So far, we have met about 28% of our goal of $1,500 and I am working hard to get that to 100%! I am talking to anyone that I can about it! We would love to have a BIG team there, wearing AxelOliGests shirts and supporting our boy! Currently, we have about 15 people and that isn't too shabby!! I've been calling businesses and really trying to appeal to them in hopes of their support. That is slow going but I'm not giving up! If you want to WALK with us, leave me a comment or go to contact me, at the top, and drop me an email! If your moved by Axel and would like to show your support, please tell people about our cause!
Send them the link, give them my blog address, email address, social media info or anything else you can think of! lol 

Okay, back to the update!!
He had an unexpected 5th surgery, due to some big complications with the previous surgery, anorectalplasty.. (Basically, I call it his anus surgery, it's a lot easier that way. ;)
My husband and I are now praying fervently that there will not be any lasting consequences for Axel.
In April, Axel was in the hospital for a few days for his anus surgery, then he came home for almost 2 weeks.
However.. He wasn't able to urinate without help from a catheter. 
Due to the in depth nature of the surgery that had been done; leaving the catheter in place was only agitating the urethra. Axel's Urologist then decided that a Vesicostomy was necessary, so his urinary tract could get complete rest. My poor babys' belly now has a G-Tube, colostomy and a vesicostomy.. Unfortunately, he will have the Vesi for at least a year maybe more. -The last time we looked, his bladder wasn't contracting.
Apparently, there is a distinct possibility that the in depth surgery caused a Neurogenic bladder. (another new term for us...) Neurogenic bladder can come on suddenly. Great.. With all that Axi has going on, his urologist has been on the lookout for anything "off"..
The operating report (lengthy though it definitely is) states that the surgeon "nipped his urethra" and "split his coccyx"..
#1.. Our boy doesn't have a coccyx, he has spinal abnormalities and in his case, that means the bottom portion of he spinal cord isn't there and he has at least 2 sets of fused vertebrae.. Kind of hard to split some thing that isn't there..
So there is a very high likelihood that the surgeon splitting a vertebrae (that was most definitely fused to another) caused his neurogenic bladder.
& #2.. "nipping" ANYthing would obviously need to heel, but nipping something so small and delicate could/would be catastrophic.
The thing is we weren't told of those things until after everything was hitting the fan. Its really hard to trust someone with your babys' life ,if they pick and choose what they tell you. Who are they to decide what I need to know. We are talking about our baby here. not a car, for crimminy sake!! Odds are, we would have understood the complexities of our boy and we would have dealt with it a LOT better if everyone had stood up and told us what the heck happened!!

What ever happened to accountability!???

THAT is when all hell broke lose..
Following the Vesicostomy surgery (which was relatively "easy" and could have been outpatient for someone less complicated, it was still surgery requiring anesthesia), everything went haywire..
The first week was spent with him not being able to hold food down. He wasn't having any bowel movements, at all. NONE.. That is not a good place to be!! Basically, his GI system shut down (having 2 surgeries in the same area within a couple of weeks of each other, was just too much for his sweet little body) and anything that was going into his mouth came right back out. Even the smallest amount. It was really scary!
After that first week, his GI tract started to wake up enough, with some medications' assistance, to start moving stuff around, thankfully!
We then gradually started to build up his feedings again.
The second week was a lot better! He was back to his happy self and had some energy!
Hospital stays are not fun for anyone, but especially for little Axi..
He was vomiting and that means they ALWAYS look for problems (clogs or infection) with his shunt (which is great, and scary! Shunt problems almost always mean brain surgery is necessary and usually, very quickly).
Add the other things he has going on and the poor guy had over a dozen tests. Xray's, ultrasound's, dye studies for his GI and Shunt studies.
In fact, the only thing they DIDN'T look at... His new anus.
Fast-forward a bit and Axi had a bit of a virus and started vomiting again. Dehydration is a very big deal, obviously, and try though we did, he couldn't keep enough down for us to feel like he was safe. Back to the hospital we went, 13 days after his big bad hospital stay.. o boy..
Again.. all of the tests.. Thankfully, they all looked good and he just needed a bit of time and care (and IV fluids!!) to get back to rights again.
Axi had a MUCH easier time getting past his issues that time, thankfully, and he went home after about 4 days.
BUT*** At our surgeon's recheck appointment for his anus, we find out that the anal dilator wouldn't go in as far as it should....
So apparently, with Axi being in and out of the hospital, he missed a check up and even though he spent 3 weeks out of a month in their hospital, no one thought to see what was happening with his rear end!!

As mom.. I feel like it is completely my fault. I should have thought to ask, I should have thought to do this and that and everything in between.
 I can't help berating myself. Unfortunately, guilt doesn't rest and I have this crazy amount of it festering, deep in my stomach. Screaming out for my boy..

When I look at it from a different angle I think WHY the hell weren't we told to begin with, that this could even be a possibility!?

How is it that our home nurse has NEVER seen this happen!?
She has never seen them need to repeat anorectalplasty.. Why is it that my sweetness should have this happen.. :(

So what it comes down to is that our boy will go in this week to get a scope done. If that doesn't go well they will have no choice but to repeat the surgery, but not until the Vesicostomy is ready to be closed up.
We were told he would lose his colostomy right around now.. With the turn of events, he might 2 or 3 years old.. (only slightly different then their 3-4 month estimate, huh..)
While we aren't in love with changing poopy bags and replacing his bag because it failed and got doody all over his clothes, we ARE completely and utterly over the moon in love with our boy, no doubt!
More than anything, we are beyond incensed that our miracle baby must go through these things!
It wasn't bad enough before!? When he had the battles he was born to face.. We have to add errors and omissions to his surgeries and stack up a whole list of new ones for him to suffer through.
That he should have NEVER needed..
At this moment, he is living through someones mistakes.
Mistakes that should have never happened.
Mistakes that could (and almost certainly will) change his (and ours and our familys') life forever.
Mistakes that NO ONE will ever care, have to watch, go through and comfort him through, but us.
There was at least a chance, before, that he could be free of incontinence issues.. I'm not calling it quits on my hopes and prayers but once again, my perspective is changing.

At the end of the day. No matter what is going through my mind, I look at my sweet, happy, energetic little man and just know that I/ WE will do EVERYTHING that I can to give him what he deserves. I don't know how I will give him the moon and the stars, but I will do my damnedest.

I apologize for the super long post.
I hadn't planned to go into quite that much detail but as I was typing, I decided, why not?! ...and also, my frustration got the better of me and I think venting to you all, helps. So, in that case, Sorry & Thank you!! xoxox

Have a fabulous week and God Bless <3