I wish I was
Home, where my thought's escaping
Home, where my music's playing
Home, where my love lies waiting
Silently for me
This is the song that is going through my head this past week!
Well it's been quite a week and WOW what a weekend it was!! Braeden has been growing stronger each and every day and blowing his Doctor's out of the water. They are all stunned at the progress he's made in such short amount of time since his last surgeries. It is amazing what can happen when you get two nostrils to breathe out of (getting rid of the feeding tube out of his nose)! To say he is thriving would be such an understatement, he is so happy and content (most of the time, he is an infant afterall). I can see that he is feeling better and that he is realizing that this world is a pretty funky place to be.
Braeden's world got a WHOLE lot bigger this weekend! We took him on his first 'pass' out of the hospital to our 4th Blood Drive. It was very sweet, we went as a family to pick him up and the boys were so excited (at least until he started crying in the car, sorry T). I knew that CBC was planning on covering it if they could I just didn't realize that it was going to go national! Who would have thought that Mr.B's first trip out of the hospital would end up delivering him into homes across this huge nation of ours? (CBC Blood Drive Coverage), I just have to say that Dave Gilson was/is an amazing reporter! He was so kind and so compassionate to our cause and to Braeden. I almost broke down several times and was I was amazed I didn't appear weepy on the broadcast! Dave asked me a few times how it felt, to have B out, to be there with our friends but there really weren't the words to describe it all. I was certainly not expecting the reception we got walking off the elevator and you can hear me commenting "that's not going to help my make-up!". The whole thing was a tremendous experience and one that we'll be able to watch as many times over that we want and Torin is thrilled we have it PVR'd because "Ry is SO funny!!". It was also our biggest turnout yet and we had some more first timers come out!
Sunday was another pass and Mr.B and I got to spend some time with a few friends at a Shower compliments of my wonderful friend Lorna. It was another great afternoon but it was all a bit much for B. I had strict instructions not to pass him around on our outings as to try to limit his exposure to germs but even so he had so much stimulation over the two days. I think all of the colours and noises would have been an overload without adding all the new faces! We did a bit of a race back to the hospital (thank you Angie for riding in the back while watching him).
We all needed a break I guess because Torin and Rylan found themselves sick (again) this week. I had to laugh because Mr. B didn't get a break, word got out that I wasn't coming in because the boys were sick and Braeden got inundated with visitors! He is SO well loved there! I walked onto the ward last week with his stroller and car seat combo and some of the nurses got teary-eyed. I think about how exciting it is for us to move forward but also how hard it is for those that have gotten attached to him. I know Braeden's 'special volunteer', Grandmaman Monique is going to feel a terrible loss when he comes home. She was assigned to him and they both fell in love. She sings and speaks French to him and I swear he understands her! He responds to her voice and her energy and they both soak up each others companionship.
SO...the word came down the pike today (whatever that means)...we had the meeting of the minds with all the 'Powers That Be' and everyone voiced their opinion and (music please),
He has been cleared by all (and do you know how many he has??) Specialists and Dr's to come home now. How exciting and terrifying!!! What I came to realize this week is how little I do know about his care and how much the nurses do...no, that doesn't sound right because I am more than aware at how hard the nurses work it is just that I've never had to do it all! I had to vent his G-Tube at Lorna's house the other day and the room went silent as I did it. I didn't think it was a big deal but it made me also realize how de-sentized I've come to medical things. I joke that I've earned my Nursing Degree over the past 7mths but I don't want to nurse any other kids but mine! In all seriousness though, without these Nurses (past and present) I could not have made this journey thus far without the complete and utter loss of my sanity.
So the plan is (barring unforeseen circumstances, back off Murphy) we'll bring him home for an overnight visit this weekend and see how it goes. I am pretty much on my own timeline now, it is up to me to get comfortable with his care at home and just having him here with us! It might seem like a no-brainer to some of you but it will take a whole lot of self-esteem on my part to care for him with the confidence needed at home, not to mention to get any kind of sleep while he sleeps. The great thing is that he can also be discharged over the phone if we get him home and just don't want to take him back...I've asked and asked and none of the nurses want to come home with us! I know that I can do this, it is just a matter of doing it now. There are things that are still really difficult for me to do like burning the granular tissue as a result of his G-Tube but I'll get over it, I have to! The room is freshly painted (thank you Jodi, Scott and Troy) and waiting for him.
Everyone asks me how the boys are doing with all of this and it is a tough answer. They are both very excited at the prospect of B coming home...but I don't think they grasp the reality of it and how much attention he needs or how much of my day will be consumed with tending to his needs. It is going to be an adjustment, without a doubt. I keep thinking that Torin will have a difficult adjustment with the noise but I know it is Rylie that is going to be in for a shock when he doesn't get as much 'Mom' time as he's used to. Sigh, no point on stressing about it until it is here right??
The day I've been dreaming for is finally here and I find myself positively TERRIFIED! How funny is that?? We do have great follow-up care in Alberta, I won't really be alone, alone. I also can take comfort in the fact that we've got such an amazing group of friends here in Calgary and they have been my rock through this when I've not had family close by.
So deep breath folks, and here we go on our next chapter...