Monday, 30 December 2013

Happy Due Date Birthday Mr.B

We had to say good-bye once again to Grandma Hurray

T kicking Daddy's butt at the Rotary Flames House Christmas Party!

Nose-scrunchers!!  I LOVE this picture!
I know it's been too long between posts when I'm wide awake at 3 am.  I've been trying to get to writing for the past two weeks but life is just seemingly in the way (darn it all).  In all reality, I've been trying to take care of myself and the rest of the household and going to bed instead of staying up to write.  It is B's 'due date' Birthday today (as is mine) and I've been playing through different scenarios in my head about how life might look if he'd made it to his 40 weeks of gestation.  I was hoping that he would not have to be a Christmas baby (as I grew up being one with my Birthday only 5 days after) but I never in my wildest dreams thought we'd be desperately trying to keep him in to be a November baby instead of an October baby!

Mr.B did get discharged on the 14th (with a leaky g-tube) to only be back into Emerge on the 18th with severe pain around his g-tube.  I had tried to get into see Dr.B but she was in surgery all day.  Her (amazing) staff did see us in the clinic and Lana couldn't figure out the 'pain' either, just that for the amount of pain he was having didn't make sense with how it was appearing externally.  It was only an Emerge visit (no admittance) and in reality, they could find nothing wrong (and we were going to see Dr.B the next day).
Enjoying (?) the big boys Christmas Concert!

Off to see Dr.Brindle the next day and same thing, no outward signs on why B would be so uncomfortable.  We had an ultrasound of the area before we went up to see Dr.B, which was reassuring.  I was worried initially that the tube was too short (length from the stomach to the outside) but no, that was fine.  I even was able to distract B enough that Dr.B got right in close to the g-tube and there was no real 'flinching' what is it??  The ultrasound looked good and the 'outside' looks good.  We still don't know but he's still rubbing at it and at times seemingly in a great deal of pain with it.  Frustration!  Dr.Cassie did recommend trying him on Naproxen (as I was giving him Advil every 6 hrs to keep him comfortable) and that actually is helping somewhat.  Being as it is an anti-inflammatory I think that that is somewhat 'telling' that there is something going on with it.  The tube itself is great though, easy to use and it's certainly nice to be back to a 'button'.

B's 'Tiny Superheros' Cape arrived right before Christmas but he
was feeling so awful that I've not gotten a great shot of it yet..

Back home we went and just tried to lay low for a few days and let the tube just 'be'.  I do find that if I bathe him twice a day that the tube is a bit less irritating to him.  I am really thinking that it is all due to the trauma he suffered to the stoma (tract into stomach) and the fact that some food (gastric juices) are leaking and therefore it burns and gets swollen inside.  All a guess on my part but it makes some sense.
Being a stinker butt!

Hanging in his awesome jammies (thanks Gina!)

The not-so-fun part of the past two weeks is that B started up with a bad cough on the 20th.  He just started coughing that day and it was a dry hacking cough.  Being as we've all been sick in this house it really wasn't a huge surprise but a bummer nonetheless.  I had the grandiose plan to try my very best to weather through it at home.  I have a stethoscope (because of B's heart/lung conditions) so I was listening to his lungs a couple of times a day to make sure they weren't 'crackling' or 'popping' (signs of pneumonia).  What I was worried about (well one of the things) was that B's lungs can also sound 'okay' and he can be really sick.

I watched over him like a hawk, watching his chest for any signs of respiratory distress.  The cough worsened each day and B's energy dropped quickly.  I packed my bags on the 23rd, ready to take him in.  It is all a dance in a way, when to take him in and when to try to keep him at home.  If it was a year ago, I would have taken him in at the first real signs of the cough progressing (and fever) but I know his lungs are strong now, I know he can fight through illnesses (and I'm certainly more confident in my 'nursing' abilities with him!). I had the bags packed but he perked up a bit when Dad got home so we decided to wait it out through the night. 

Again on the 24th, I was ready to go but I just so wanted B home for Christmas (I would have taken him in in a heartbeat if I didn't think I could handle it or if I thought he was in great respiratory distress).  This was B's third Christmas and I selfishly wanted him to have it be his first Christmas at home with all of us.  I was so torn because he'd cough and hack and then be playful for a bit convincing me that he was still doing alright.  My in-laws arrived after midnight and Christmas was officially started.

All snug in their beds (kinda) Christmas Eve

Mr.B had a rough night (no surprise) and slept through most of the big boys opening their gifts.  There was no way I was going to postpone the Christmas morning (since the boys aren't allowed up before 7 am as it is) OR wake B up necessarily.  It was still a comfort to know he was home with us nonetheless.  I knew that since it would be day 5 of his 'illness' that he'd either be on the road to getting better or he'd be going downhill fast.

The big boys were thrilled that Grandma and Pappa had joined us for Christmas and surprised them this year (they didn't know they were arriving).  We had a lovely time watching them open their gifts!  Mr.B woke up absolutely miserable wanting Momma and nothing else.  He clung to me most of the day and just got seemingly worse as the day went on.  His inhalers were no longer giving him any real relief and his wheezing just got progressively worse and he wasn't able to handle much of his feeds.  I had to suck it up and realize that my 'dream' of Christmas at home just wasn't meant to happen this year (BUT we did make it longer at home this year Christmas day then we did last year!).  Mike and I took him into Emerge and they took him back right away.  I knew his breathing had worsened through the day and I knew he was most likely going to need some oxygen support.
So much fun to just sit and watch them

Amazingly he was still able to hold his own (sats of 95%) when we got there even though he was very audibly wheezing.  I had to laugh because the Emerge Dr (who we'd not met before) said, "kids that sound awful like this generally have an x-ray that actually looks not too bad".  She left and I told Mike that B's generally the opposite of that, he usually looks and sounds good but the x-rays are awful.  Sure to form, B's x-ray was not good.  As our stay grew longer he started to have more and more de-sats (oxygenation drops below 90%) and the blow-by oxygen just wasn't cutting it anymore.  Onto the dreaded nasal prongs it was and Mr.B was so not impressed.  He did troop through it though, in true B fashion.  Unfortunately each time B drifted off he'd go into a de-sat again and the O2 would be turned up a bit more.  The thought was that we were either looking at RSV or viral pneumonia (with bronchialitis).  I kept telling myself that he is so much stronger then he was a year ago when we ended up with a 10 day stay on ventilator in the PICU due to bronchialitis (with a month long stay in total).
Pappa snuggles as Momma got ready for the trip to ACH

The frustrating part is that we knew he would be admitted but the Emerge Dr didn't want to approve the admission until she found out if he could 'eat' or not.  I had to run a feed for him and see if he would tolerate it (mostly).  The Dr didn't want to send him upstairs if he'd just need an IV, so I get that, but it was a long and (to me) unnecessary hold up. We didn't get upstairs until almost 5 am and then once you get upstairs you have to go through a whole bunch of admission stuff before you can even dream of sleep.  We also found out that (once again) there was no room for us on Unit 2 or on the Purple Team.  Instead we were introduce to Unit 3 for the first time which (as you can guess) came with a whole lot more stress.  It is very difficult to convey to people who Braeden is (when he is well) and to highlight only the necessary parts (that have to do with the admission) without leaving out too much of his life story so that they clearly understand him.  There is no possible way to explain a complex child like Mr.B (especially after no sleep and spending the night in Emerge) to a brand new set of Nurses, it's very stressful.
My wee sick little Love

I forced myself to leave with Michael (at 7 am) to go home and get a few hours of sleep because I knew if I stayed that I wouldn't get any sleep with people coming in and out of the room.  When we left, B was on 3 litres of oxygen (which is a lot when you generally don't need any) and really struggling to catch his breath.  Less then 24 hrs later B was without any oxygen and perking up a bit, even gave me some smiles.  This super kid!
I wonder what's in this??

Might as well bring some Christmas to him

I expressed to the evening Nurse that I would be interested in taking him home the following day if he was able to maintain his oxygen at night while asleep.  She was concerned due to the fact that he wasn't on him home routine of feeding but I assured her that his feeds were the least of my worries.  I would be happy to run his feeds how he dictated that he needed them if I could take him home.  The less time we needed to spend around all of the 'germs' of the hospital the better!  

Looking and feeling a bit more 'B' like

When I got into ACH the next morning B was still off the oxygen and after the many rounds of ventolin/steroid and nebulizers he was breathing well enough.  I was confident that I could handle the rest at home and requested the Dr be paged so that I could spring him.  Thankfully Dr.Wong was on the Blue Team (the one we were put on) and she knows myself and B somewhat.  She was fine with me taking him home after we chatted a bit.  She agreed that home would be better if I thought I could handle it and that I promised to bring him right back if not or if things went south again.  Yay!  What I was sure would be at least a week long stay when we went into Emerge was less then three full days...SuperStar Mr.B!!
Life is better at home with Daddy

I can honestly say it's not been an easy few days at home, it never is with a sick kid, let alone a sick B.  He's still been coughing hard and there's been the non-stop snot flow (you're welcome) and the diarrhea to contend with.  I don't regret bringing him home though (even through my severe sleep deprivation) because he gets to spend more time with his Grandparents this way and I get to be with him 24/7 which is just not humanly possible when he's in hospital.

So was it the Christmas I'd imagined, no (although I had of course run through the scenario of him possibly being admitted in my head) it sure wasn't but it was still good.  Really, what it comes down to is that Christmas is only one day and it can happen on any day you really want it to (for Braeden).  He's been slowly opening a few presents over the past few days and he'll open a few more until he's done on his own time, at his own pace.  Life with B is never predictable and never will be.  Next year he'll be that much older, that much stronger and who knows?  Maybe his fourth Christmas will be the one where we all get to spend it together!

I hope you all have had (or are having) a wonderful holiday season.  Many great wishes for each of you as we enter into 2014 in less than 48 hrs.  Have a safe and wonderful New Years!

**I am still behind a few posts for blankie stories and our 'Season of Giving Back' but bear with me, they will come soon!**

From Our HOME (yes!) To Yours...

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