Friday, June 20, 2014

Not expecting the unexpected.

 Time just seems to keep on moving faster and faster especially when the unexpected happens. Alistair ended up landing himself in the hospital for six nights at the end of May here. I truly didn't see it coming. I believe it started with him having some nasal reflux of food on a Tues. Wednesday he could only handle an hour at daycare and only drank a couple cans of pedisure and by Thursday the kid didn't move. AT ALL. It took me until that evening to realize that I needed to take him into ER. I always have been able to turn him around till this point but not this time. He has never done this before. He would only move to gag and vomit. Ugh I hated it for the poor little guy. He didn't start eatting until Saturday and that was still minimal. Unfortunately I had a sour taste of what its like to be on the otherside (patients side) of the curtain and having to speak up and advocate for proper care when Alistair's situation seemed not be to taken seriously by the ER doc.
  So hard to do especially when that is my work environment but on top of it being totally sleep deprived and watching your kid deteriote before your eyes and not be considered as a credible source for your child. I could really go on but I won't. ......Or perhaps I will just a tid bit! If any health professionals are reading this...please keep in mind that you have NOTHING to consider as a special needs childs "normal". You can't look in a text book and go "o this is the way this kid would be if all his ducks were in a row health wise" So the parent is a huge source of information soley in this regard. Plus us special needs parents live and breath every breath and heart beat of our kids as they don't have a voice to tell us whats up so we have to read all the fine clues that occur throughout the day and compile them to determine what where and how things are happening for our peps as no one else can come along having never seen our child and read these clues the same way. I'd just love it if health care professionals could spend a month or so at Childrens' working alongside the professionals there and see how they include parents as part of the team. There is the odd hic up there too but for the most part the philosophy of care there is incredible. Another thing I wish is all health care staff had the experience of sitting on the other side of the curtain (without their title) and experience how difficult a position it is to be in ....the waiting, the lack of information, watching your loved one struggle as staff take their time to bring or provide interventions, juggling a balance of words to make sure you aren't offending the health care staff to prolong agony and struggling of your loved on....the list goes on and on....

Anyhow...moving on we headed up to Pediatrics and eventually got started on two antibiotics which eventually took affect on Alistair. But he did keep dipping down with his oxygen saturation and his heart rate was beating away more than my liking. But it seems that he got sinusitis. His xray and blookwork came back clear but it was obvious something was impacting him negatively. So it was to my great relief when he started consuming foods and liquids.
Poor Francis had her second birthday while we were in hospital. I had been telling her for the past week we would be having a party in the park for her. Fortunately she was unaware of actual time frames so we kept saying that it was coming. It sure did take a toll on her too though. She's already popping on the potty 99% of the time but she became severely constipated and completely out of sorts with her emotions. I kept thinking about poor families who have to leave their children behind with other family members as the parents head down with the primary child that is sick to Children's Hospital. Its got to be devestating. Anyhow one bonus for her is she got to sleep with her Dad everynight while we were gone. They definitely bonded during that period

It was pretty humbling all the people that came by for a visit to provide well wishes and entertain me as I waited out Alistairs time in the hospital. It was also eye opening how many people reached out to try and lend a hand taking Francis and just trying to make our lives easy just in those short...long six days. One forgets how extensive their support network is until something such as this occurs and then one realizes just how lucky they are.

Anyhow, when we finally got discharged I decided to withhold Alistair from school one more week as he had lost a couple of pounds which is huge when you only weighed 28 in the first place! So he had a week of drinking cream, eating a ton of avocados, along with lots of peanut and almond butter. Thankfully he had a good appeitie so therefore I just had to keep shoveling in the food along with the high fat smoothies.

We ended up throwing Francis a Second Birthday party the following weekend which worked out great.We still did the party in the park which seemed to make children and parents alike very happy with it all. Lots of places to run and play. We also did a nice little train ride around the park too which she found so much fun. So not only was her cup full at the end of the day I found mine was too!Grandma did a neat thing for Francis and resurected my old table and chair set when I was a little kid. She sure spiffed it up nice and Francis loves her new set in her bed room. I think there is a tad of resemblance between her and I as little ones!

So this last week has finally been a week of almost normal for us. The books are almost back on track. We are spending lots of time with her cousins as they are sadly moving North on us. We are learing to ride the bike she got for her bday. Socials are back in the swing of things. Plus my brain seems to be screwed on right for the most part. So all a big bonus.Now I'm just trying to get a bunch of summer painting started/ down when the weather is so gorgeous.

Well this girl has got to go to bed. I've been buring the candle on both ends for so long its time to put that down as a priority sooner than later!

1 comment:

  1. Hi Julie
    Excellent reminder for health care providers & so true! Glad your little man has recovered & back to his routine.
    Happy summer! xo