Sunday, 13 October 2013

So Much To Be Thankful For

How it has happened that Fall is now upon us and the leaves have all turned is beyond me!

Gazing out Mr.B's Hospital room window is a sight to see
with the Mountains on the horizon and the leaves all the colours of fall.  I am amazed that Thanksgiving is already here and now winter will soon be upon us.

Today is a day of Thanks and do we ever have many of those.  I try very hard to thank the people that make a difference in our lives each day as we go along but I know that I don't always succeed.  Saying 'Thank you' may seem like such a small thing but to the person being thanked it might mean the world.

I am currently in B's room, listening to him sleep and thinking of all of the amazing and wonderful people that have come into our lives because of Braeden, his strength and his love. I am so very... thankful each and every one of you.  For all of you that have followed our story from the beginning and for those of you that have just joined in the fun.  It blows my mind when I see where in the world Mr.B's story is being read!  I'm thankful to those of you that are also following us on Facebook and sharing positivity the world around!

I am beyond thankful and grateful for all of the staff/volunteers here at Alberta Children's Hospital, you make 'living' here bearable and even fun.

We have also been continually blessed with all of our Aides, Therapists and Homecare workers (current and past for both T and B) which by proxy become honorary family members! Such amazing women and men!

I would also like to thank my family, friends, neighbours and fellow ACH have continually lifted us up when we've felt so weighed down.

I am also very thankful that we live in this great Country with Healthcare and Funding for Disabilities. I know I might gripe about our difficulties at times but I also know how very fortunate we are to be where we are! Thank you Alberta, and thank you Canada!

While this journey may be about our little Family it is really so much more.  Without the love, support and kindness of others our story would be so much less (and I might be rocking in a corner somewhere).  You are all a part of our story and a part of our journey.

The great outdoors escape!  Guess we could've taken his toe probe off...

It's been a bit of a long and rough week here at ACH.  Mr.B's been great, he's settled back into 'hospital' living which I guess is a good thing.  He's so used to being here that I think he just thinks this is his/our second home.  Some might have a vacation property...we've got ACH (and Rotary Flames House, which is kinda like a vacation property).  I had a busy week of meetings and appointments so Justine thankfully was able to be here with B each day.

Justine getting into the 'grit' of her job! :)
Mr.B had an appointment with Dr.Brindle (surgeon) on Wednesday so I walked over to cancel it since he's an inpatient (and she's one of the Dr's to bring him in) and asked if I could just see her instead.  Her gracious staff asked and I to use B's appointment to chat with her.  We hashed out what has been going on and I voiced my concern that we're 'missing something'.  Dr.B agreed that there might be more to B then meets the eye (he's proved that time and time again) and she did stress there is nothing 'symptomatic' about the way he's presenting.  She did go on to say that with B we just never know, there could be something completely asymptomatic that he's trying to tell us.  I told her that now that's it's been going on for six months that I would be asking for a CT scan to at least rule out all of the 'physical'.  I just felt that we'd been treating (trying) his gut for all of these issues but we'd never really taken a good look inside.

I went on the explain that I didn't want to expose him to more (unnecessary) radiation but that I couldn't possibly watch another six months of this with no answers.  Mr.B still weighs less then he did six months ago.  His weight comes up, he stops being able to handle food, weight goes down and on and on goes this cycle.  Dr.B agreed that a CT might be warranted at this point since we'd been coming up empty for awhile now.  We also chatted about the possibility of going back to a NG or even NJ (through the nose and down the back of the throat into the stomach or small bowel) tube if necessary.  Neither of those would be ideal since I'd have to replace them several times a day (he's been known to rip them out on more than one occasion).  I left her office feeling good, we had a plan of action.
Learning new things!

I finally got a chance to see his Pediatrician (on rotation) that afternoon as well (since I'd not exactly been easy to find earlier in the week).  I was feeling good about everything and then we talked.  Dr.MacNeil (who was B's first ever Pediatrician here on Unit 2 so she knows him well) told me that she couldn't see how we could warrant a CT at this time.  A CT scan needs to be ordered to find a specific problem and we couldn't order one to 'just look and see' like I wanted. 

Dr.M also went on to say that she isn't convinced that this is something physical at all but instead believes that it is actually Neurological.  I explained that I could believe with 100% certainty that it could in fact be Neuro (we know B's brain is a 'Braeden brain' and small in size) but that I really felt the need to rule out the physical first.  Dr.M said that the risk of a CT was just so much higher then the possible outcome.  She also went on to explain that I might need to let go of finding a 'reason' for all of this.  We just may not find one.  I'm just not satisfied with hearing that 'it just might be Braeden' after six months of this.  Dr.M explained that B might just never get back to what he was eating before (250ml/hr vs only 150ml/hr now) and that that's okay.  She assured me that maybe we just need to look forward, not behind us and accept what he can eat and move forward with that. 

Dr.M also explained that the sleep 'issues' were also pretty typical for B's age/development and that we weren't really needing to take those into account for the GI issues.  We kind of went around and around and when she left I was more confused then not.

B's favourite position these days is on his knees in his ACH window
For those of you not sure how this could be Neuro, the gut has more nerves in it then even the brain and is in many ways more complex, and therefore even more of a mystery, then the brain.  If the neurological pathways of the gut aren't being communicated to properly (or communicating back) then an issue arises.  Could all of this be in fact Neuro?  For sure.  BUT could it also be something else that is physical?  I think so.

The other frustrating part for me was that GI hadn't been called to weigh in on all of this as well.  I felt that they should in the bare minimum weigh in with their opinions.

A wonderful surprise visit from "Auntie" Trish, B's NICU Primary Nurse
As I drove to pick up the boys from school I just burst into tears.  My main thought was why are we even in hospital then?  Why risk putting B at risk for all the viruses floating through these halls if we are just going to decide 'it's B'.  I fully respect Dr.M and I fully got what she was saying BUT I couldn't seem to let it go.  The thought of yet another 'unexplained' issue with B was just too much.

Braeden is SO complex, such a mystery, and so confusing!  I know that he's got Dr's scratching their heads but why, just once, couldn't I have a straight forward answer.  Did I really think they would find something on the CT?  The easy answer is no, I didn't.  So why, WHY did I feel the need to push for one?  I just was/am scared to think that in another six months we'll finally do a CT and find something that could have been seen/treated/dealt with now.

Sterile water is fascinating!
I came in on Thursday really thinking that maybe it would just be in all of our interests to take him home.  I hate to be here in hospital taking up a bed trying to see if we can catch one of his 'pain' episodes.  It is pretty much impossible to replicate home life here in ACH because B is so much more limited in what/where he can do/go.  When B has his bouts of (what I believe to be) intestinal spasms he is generally either having his food pushed too fast (which we're not changing here at the hospital) or he's been doing too much (which isn't really possible here either). 

Goofball Rylan
Justine and I have been trying to mimic home life as much as possible but I also found out (after agreeing to come back in) that B still needs to be on isolation for his VRE (super bug from his stay in here almost a year ago now).  I was so surprised because I was told that if you got three negative (anal swabs) then he'd be 'cleared' off isolation.  We had his third swab completed on his last admittance and it had come back in clear.  Three clear, yay!  Or not.  I guess what happened is that each time they swabbed him he was on antibiotics and therefore they were not allowed as a true negative.  Just a little frustrating!!  Being on isolation also means that he can't go to the playrooms (and therefore get more exercise like at home).

Of course B's been 'perfect' since coming in almost a week ago.  He's even sleeping well at night (which I have my own theory about).

Our meeting Thursday also included Dr.Volmiero and she re-confirmed what Dr.M had said about the unnecessary risk of the CT scan.

Happy big brother T, he's missing B something awful
Friday we came to a compromise and are going to do an ultrasound of the abdomen next week.  Dr.V and Dr.M both said that they can certainly see all that they need to on an ultrasound.  We've also started B on canola oil as a fat supplement to get his weight and calories up.  I was more than a little hesitant to trial anything new since the last two trials didn't go all that well but Dr.M had a good point that if we trial it while in here everything is documented.  So we are now on day three of that and so far so good but I am keeping a close eye on whether or not we're in for yet another round of constipation with this new addition.

Saturday was not a good day, in fact it was a no good, very bad day for Momma.  I'm not by nature a confrontational person and in fact I'll avoid conflict in my own life if I can but when it comes to my kids the gloves come off.  I came in on Saturday morning and B had a new Nurse (which is fine) and when she was going over what had gone on during her shift thus far she mentioned that she'd given B a bath.  My response was "Great!  He loves having a bath."  She gave me a funny look and said that he really didn't enjoy it at all.  I thought that was odd and then realized probably what had happened so I asked if she'd tried to make him 'sit' in a bath.  She replied that yes, she'd 'sat' him in the bath, it didn't go well so he had a pretty short bath.  I was a little stunned that she didn't know that B can't sit.  Can't sit, won't sit and has NO desire to sit.  Now I can let that one go, people see B crawling and moving so I can see how one would 'assume' that he could in fact sit.

Then as we were chatting she asked if there was a secret to giving B his drops.  I inquired about what drops she was asking about and she showed me his probiotic drops.  I said, "No, no secret to them" and she said, "Oh, I couldn't get him to keep his mouth open to take them".....Oh dear lord, please tell me she did not try to give my 100% g-tube child oral medication...."So, um, to get this straight, you tried to give him his probiotics orally??"  Her answer, "yeah, the order wasn't really clear, it says to give 5 drops by g-tube but we can't just put drops in his g-tube."  "Well, you could certainly have put them in his know he's 100% g-tube fed right?!"  GAK!!!!  This, this is not okay!!  Now you might think that I was over reacting but I was not and I'll explain why this is such a big deal for three major reasons.

1) B has a massive oral aversion that we've been trying to introduce positivity around his mouth with gentle touches and such each day.   The fact that she tried to pry his mouth open to give him something foreign would have been a huge step back for him.

2) If (and I imagine she didn't actually get any in his mouth since he would have shut down like a steel trap for trying), if she had gotten some drops in he would have been screaming and fighting her tooth and nail and his chance of aspiration would have been huge.  It doesn't take much to aspirate and I'm pretty sure a probiotic in the lung would have some pretty serious consequences.

This is why I had to have a good cry afterwards:

3) Justine and I have worked SO hard to try to make this hospital stay a positive experience for Mr.B.  Braeden knows all about cause and effect now and it is getting increasingly difficult to get him into any of his appointments without a major meltdown as (cause and effect) he thinks it's going to hurt.  All of our careful planning and reinforcement would have been gone the minute she came at him orally.  Breaks my heart.

As I said, I'm not a complainer, nor am I much of a pot-stirrer but man was I MAD.  I actually had to play with B for two hours just to calm down enough to make my complaint.  I did inform his weekend Pediatrician as well as both of the Charge Nurses on the floor of what had happened.  I made it clear that she wasn't welcome in B's room anymore (I've NEVER done that before in almost 2 years).  Generally in the past when mistakes have been made I've not heard about them until afterwards so this time it was a shock.  The saddest part of it, I'm pretty sure she didn't/doesn't understand why I was so upset by this.

Daddy time
The good that did come out of it was that I realized that I've become too complacent in B's care, I can't assume all that have him will know him.  I've also realized that his 'care plan' that a new Nurse will go over before having him needed to be updated.  B now has a nice blue sign in his room that is the "FYI's of caring for Mr.B".  I feel badly for the Nurse in the sense that she didn't see the harm she was doing and learn from it BUT to not question something she didn't quite understand or comprehend is inexcusable in my opinion.  Of course, Murphy's Law, she was the first face I saw when I came onto the Unit today!

Anyhow, we are moving on.  It happened, stuff happens here, we're all human.  Moving forward.

Since tomorrow is a holiday Monday we're probably not looking at getting B's ultrasound until at least Tuesday at the earliest.  We also get to see Dr.Fruitman (B's Cardiologist) this week which I'm looking forward to, not just because we love her but also because I know B's heart is strong!

The assumption is that we'll be here for most of next week as well to do a good trial with the canola oil before going home on it.  Since we're in hospital B will also get his inoculations up to date on Wednesday.

Moving on!
Amazing friends (and they're pretty funny too!)

Today is Thanksgiving after all and we've got very much to be thankful for.  We had numerous invites over for Thanksgiving feasts but I'm cooking our own dinner tomorrow to have some normalcy for the big boys.  We did however receive some amazing pies today though!  Thank you Sumyu and Lisa for the pie deliveries as well as a huge thank you to Jodi and Kelly for cooking us all dinner two nights last week.  As I've mentioned, we are blessed.

but most of all,

Happy Thanksgiving All! Thank you for your continued positive thoughts and comments for us!
The countdown to 2 is on!!!

From Our (Unit 2) Home To Yours....

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