Tuesday, 25 June 2013

Room With A View

I just have to say that this city and it's citizens are amazing!  There was a call for 600 volunteers today for various tasks and (I think as there are mixed reports) that as many as 7000 people showed up to help!  Way to go Calgary!!  I'm still trying to figure out how and when I can be of assistance for the clean-up so if anyone knows of some smaller jobs please let me know as I'm happy to help!

Onto Mr.B...

Just chillin' with my (upside down) book
Happy Dance, happy dance...we have our own room!  Yay!  It was a long 5 days in the procedure room that's for sure but we made do and B really trooped through it.  His Nurse Rose put him in his bouncer in the door way a few times in the past two days so he got lots of lovin' from the traffic going by.  I can't even count the number of Nurses that commented on his smiles that he was freely giving out!

Waiting on my Girlfriends...
I can't even tell you how happy I am that Mr.B will finally get to see some daylight again!  It is hard living without a few things at the hospital but to never know the time of day is awful, simply awful!  Not to mention how much easier it is on our bodies to have some hours a day of 'natural' light and not the constant of halogens.

The boys and I went up for a visit tonight after dinner and we took Mr.B for a short walk around the hospital (gotta do all the floors and elevators of course) and when we got back to the room B's face light right up and he just beamed when he realized that "The Cat in The Hat" was on TV!  Hilarious!  It is sad when you realize that TV is one of the saving graces of hospital living...hard not having it for 5 days.  Keep in mind this is an active toddler who wants to go and interact and be entertained!

Apparently all of my anxiety leading up to the Metabolic test today was for naught...it was postponed until tomorrow...sigh.  I understand the need to postpone it, I am just feeling stressed knowing the B will be stressed.

Yesterdays bathtime bonanza!
His feeds seem to be going decently although he has had some tummy pains again the past two days.  He is up to 100mls over an hour every 2 1/2 hrs and all night feeds.  Everyone keeps asking me when we are going home and I'm not too sure.  I am thinking maybe as soon as tomorrow but more realistically maybe Wednesday?  The all-night feeds are going to be an at-home challenge but we'll figure it out and survive, we always do.  Envision a tube from his stomach attached to a tube running food and said tube comes detached during a night terror...ugh, mess.  Not to mention his feed is only good for four hours so his Momma will be getting up to warm new feed, clean/wash out the bag and reset the pump every 4 hours (not like I sleep anyhow right??).  All in all, it will be nice to be home again and to try to find some sort of rhythm for the summer months.

Getting a wee bit big for this but man was he happy to be in water!
Torin is on me repeatedly  lately asking if we are going to BC this summer.  I've not said anything to him about the possibility of a trip but he remembers the years gone by and he was devastated about not going last summer (some of you might think devastated is an overstatement but to a child with Autism it really sums it up).  I would love to go, few things would make me happier but it is looking less and less like a feasible option.  Mike certainly has more and more on his plate with his site and there is no way he'll be able to even have a weekend off this summer let alone any time to travel (to come out and drive back with us).  Dr.Brindle did mention she's gone for the last week of July and first week of August so we do at least know surgery won't be those two weeks.

Not too sure who is a bigger flirt?
I ran into Dr.Brindle today and we chatted for a bit about B and she'd seen him that morning and was pleased he was looking so well.  I explained that he'd been having 'pain' episodes again the past two days and she took some time to re-look at his xrays as well as his last contrast study with me (which I can only assume she was supposed to be doing 100 other things).  She said there really was nothing outstanding to her on it except for the fact that when they did the contrast study they were searching for upper GI answers (like if his Fundo was undone) and not looking at the whole gut.  It is possible that his 'problem' area is lower down and that doing another contrast study that follows it through might give us a better understanding of what is going on.  Since it is a wee bit of an invasive study they will only proceed with it at this point if B has trouble maintaining his feeds going forward.  

Dr.Brindle did mention as well that there have been numerous surgery cancellations and such with the flood issues so she really has no idea now what our time frame will be for surgery.  I know she has us in the back of her head though and if something comes up she'll think of B.

So very stuck...again (am thinking I should make a 'stuck'
photo album)
I'm not too certain what Dr.Volmiero's plan is for the feeds at this point, she was so very busy with other little ones today that we didn't really spend any time chatting about B (completely understandable).  I think we are getting to a point (fingers crossed) that will be adaptable to living at home.

Tomorrow we are onto the Metabolic test (which no one seems to have really seen or heard of...) and hopefully a pain-free tummy day.

I have to give some huge Thank You's! 

Thank you Gina for taking the big boys off my hands on Friday when the schools were closed unexpectedly from the flood.  Thank you as well for offering before I'd even thought about the fact that I was going to need help!  AND Thank you as well for going and picking up my 'essential' needs off my grocery list (after having my kids over to play AND during the craziness of the State of Emergency when the stores were crazy!)...you're wonderful!  You said you'd wished you'd been able to help me more?  Friday was a dream come true my Friend!

Thank you as well to Lisa and Preston for offering to take the boys today.  Not only did my kids get in a great playdate with their buddies, they got taken out to lunch AND a movie (with treats)!!  Both boys were so happy, relaxed and exhausted tonight!  Can't thank you guys enough for taking them again!

I honestly don't know how any of this journey would have been possible without our amazing friends and neighbours that have been willing to help on a moments notice time and time again!!  Thank you!!!

From Our Home (REAL Hospital Room) To Yours...

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