Friday, 17 January 2014

Back To Mr.B

Happy Birthday to my great big 9 year old boy! 

We finally have our 'full' Mr.B back!  He is certainly feeling more of himself the last few days which is so nice to see.  He is 'chatting' all the time and very playful and happy (all of life is a smile when you're Mr.B).

It's been a rough few weeks fighting off this virus with B finally feeling better and then I felt worse and vice versa.  We ended up back in hospital on Jan 2 because when the Homecare Nurse came for a visit he was only able to Sat at about 90-91%.  He had that audible 'wheeze' and was just not a happy boy.  I still had our bags packed from our last stay and I knew that I was most likely going to have to take him in but was still trying to manage it all at home. 

I didn't get to ACH until later that evening when Mike got home (if it was in any way urgent I would have gone right in).  When we got there the little stinker was able to Sat 97% at the Emerge desk!  We were still taken back right away due to the previous admission and the fact that his lungs were so tight.  It was a Dr that we've had a few times (thankfully) and he's seen B at some of his worst Respiratory admissions so at least he had a baseline to go off of.  The Dr walked in and B was laughing and playing with me, sating 97% on the monitor and the Dr said, "any other person and I say, why are you even here?".  It's so nice to know that the Dr's do take me seriously and do listen to me (most of the time anyhow).  I quite like this Dr because he then took a listen to B was not at all happy with what he heard.  "Ahh, yeah, that would be why".

I explained the constant need for ventolin at home and that he'd not really progressed to getting better after our release on the 27th (which, yes, I did push for).  We went for a repeat chest x-ray and had a chat with the RT.  The xray actually did show some improvement over the one on Christmas day so that was reassuring as well as the fact that he was still able to maintain his sats.  The main concern was whether or not B would be able to maintain his sats while sleeping.  I knew that with B sating as well as he was that I could push to take him home and I also knew that Nurse Bo would be able to come by the next day to listen to him and check him over.  The Dr wanted to hold us until B fell asleep but I explained with how over stimulated the ER makes him that that could be hours away (I also knew that the Emerge was packed).  I asked about 'borrowing' a Sat monitor to read his overnight levels and the Dr was happy with that arrangement.  Unfortunately the RT explained that I couldn't actually borrow one unless it came from the Respiratory clinic so that was out.  I reassured the Dr that I was completely comfortable having him at home now that I'd seen how well he was holding his oxygen and I promised that I would bring him back in a heartbeat if needed (this Dr also knows how fast B can flip from 'ok' to very ill).  He did stress that I should consider buying a Oximeter for home (measures oxygen and heart rate) and I had to laugh because I didn't want to bring B home at 7 1/2 mths without one and all the Dr's and RT's said if I needed a monitor then B wasn't ready to be at home.  The Emerge Dr also said that he was on shift the next day as well and that if there were any issues to just bring B right in to see him.

I did have the Homecare Nurse come out the next day and just take another listen to him (he wasn't any worse or better) and she said he sounded about the same.  We had an appointment with Dr.Cassie the next week so I was confident that we could make it through the next few days.

**I just have to say how thankful I am for the Homecare Staff (our Nurses, RT's and Physical Therapist) because they will try their darndest to help out a family when needed!  They will even rearrange a schedule so that they can come all the way over to your house!**

When we saw Dr.Cassie on Monday B was certainly still not himself but she did say that his lungs sounded okay.  Works for me!  I had arranged to get into see the Pulmonary (lung) Dr earlier then planned (we weren't supposed to be seen until March) so Dr.Cassie was happy with that follow-up to come as well.

We also got in to see Dr.Frank last week (Plastic Surgeon) and it had been almost 2 years since he'd seen Mr.B.  Dr.Frank was very pleased to see B's jaw growth and said that he would rate B's jaw (Pierre Robin) as being mild to moderate now when it had been severe when he was born!  Yay for B!  I was thrilled that we'd made the right choice not to trach B or to do the mandibular distraction surgery (move the jaw forward)  when he was tiny and let him grow instead.  (Of course if it had not been an option for B to breathe we wouldn't have opted out of it).  It was a hard decision to make at the time, we were never expecting that B would be off his oxygen at 18mths of age, it was expected he'd be on it for many more years.  I look back at what this child has overcome and I'm just stunned!  When you hear him screech now you'd have no idea that one of his vocal cords was almost completely paralyzed after his heart surgery!  Dr.Frank did say that yes, we'll most likely still need palate surgery (extremely high/peaked palate) but that it would still be a little ways off for now.  From a jaw standpoint though?  Dr.Frank was happy to see how things looked and said that B's jaw will continue to grow with him and may even 'catch up' by his third birthday.  It is SO nice to have good news for a change!!

We had an anniversary of sorts last Saturday (on Torin's Birthday), it was our second year anniversary of donating blood.  Mike and I decided two years ago that we wanted to give back and we weren't sure how.  Our good friends Lorna and Amie thought of the idea of a blood drive and it worked!  We got right on board with the idea and we've now donated with a group of 8-10 friends every 56 days (give or take) for the past two years.  This makes me proud for several reasons but some of the biggest are that we were able to replace (and much more) the blood that B needed to survive.  We have had friends and family literally from coast to coast go out and donate over the last two years (some of them multiple times) all in Braeden's honour.  We've also had so many of our donors be FIRST TIME DONORS.  That is huge!  We are so proud to say that more then 1/2 of the people that have donated in B's honour did so for the first time in their lives!  It was a great day to celebrate so B wore his new Tiny Superheroes cape and wowed the donors with his cuteness (and his story and probably the chocolate cupcakes!).

B continued to drag his butt a bit though through the weekend but we could see bits of improvement each day.  The viruses this season sure have one heck of a long life!  We started this week off (Tues) with another visit from Homecare and all three of them were very happy to see B up and at em (and maybe just maybe performing a bit for them).  Shawnee (RT) said his lungs actually sounded great and Luci and Andrea (Nurses) were happy to see him a lot more active and alert then the last time they'd seen him.

We also met with our Physical Therapist and Dietician this week and they were both happy to see B progressing.  He was actually back on the chart for his weight in the 3rd percentile...I'll take it. 
Mr.Poser and Miss Sweet!

Teaching Araya how to crawl!
Mr.B is making so many gains both physically, cognitively and in speech that it is amazing to watch.  He is happily and consistently now saying 'Hi' when I (someone he knows) walk in the room and he is mimicking our intonations on other words.  He may not be pronouncing them but he sure is trying out new sounds in his throat.  He is crawling at a rapid pace (especially if he's trying to get somewhere he's not allowed) and he is certainly acting just like a 2 year old!  For a kiddo who is 'globally delayed' I would say without hesitation that he's certainly acting his age! :)  He has learned 'No' really well (both from us telling him and his response to us!), he is happy to get into everything (Rylie calls him a 'cute little monster' when the boys forget and leave toys around), and he's more than happy to have a fit when he can't/won't get what he wants (along with the lovely stage of hitting and head butting).  I'm THRILLED to write down all of these stages (though not thrilled at all when the head butt comes my way)!  He's growing in so many ways and he continues to challenge me each and every day.

From Our Home To Yours...


Zoe Stevenson said...

He is doing so well and so are you. He is so cute and certainly looks like a mischievous 2 year old!! Love reading his story on here add Facebook xx

Zoe Stevenson said...

And he's adorable in his little waistcoat! Too cute!! Xx