Just Breathe...

Tonight Paul and I went to the book review and discussion with the author of the book "The Boy in the Moon" by Ian Brown. I found out this evening that Ian Brown is one of Canada's top journalists who is a multi-award winning Globe and Mail writer. I started reading the book today, but didn't get to far. As of know I can honestly say the number one thing I like about this book is the author's honesty. I love how "in your face" he is with his writing. He doesn't sugar coat anything and he manages to say the things in this book that we as parents of children with disabilities only think...and never say!
There were a few key points that we felt we could relate too, one for sure being the fact that this life is NOT easy, and sometimes it sucks. His son was born with a very rare condition called CFC which is a genetic mutation. Basically his son is mentally and physically disabled. He is non-verbal and to an average person un-responsive. However dad does see that he responds to his outside world, but at his level of understanding. You see, that's the purpose of his book. Too teach us, the readers that we have to stop trying to make these children fit into our relm of normalcy expecting them to respond to our standards. We need to learn to get into their world, understand them for who they are and learn to hear them. They do speak to us, they are responsive. If you look close enough and listen long enough you can see and hear that they are there, that they want you to see them.
Paul and I both found this evening useful, It was nice to hear someone else relate to your world. I mean, we do not have the same story as this family...and our struggles are slightly different. But, what remains the same are the feelings involved, the effects on your family, the effect on your other children and the effect on you...as a person, mother/father and wife/husband. Unless you are raising a child with special needs, you cannot understand the daily struggles and challenges that we face, nor can you not relate to the things in life that others take for granted...we have the ability to find greatness and appreciation in, and for that I wouldn't change a thing. He shared a story that happened with his son through the middle of the night, when he and his wife would take turns getting up with their son when he was unsettled. It brought back a very strong memory for me and on the way home we talked about it.
Ian Brown discussed how as parents of children with special needs spend numerous days, nights and weeks in the emergency room or even ICU. It becomes our "normal", you learn where the best parking spot is...closest to the elevators, you learn the sounds, smells and anxieties of the "new" mothers sitting in emergency room. It even became so familiar for Paul and I that we had the secret phone number to call straight into the ICU, department so that we could avoid the emergency room all together. We pretty much knew every resident in MacMaster University Medical Centre's ICU, and could call or page them at any time through the day or night. We were thankful for that even though we hated the fact that we had those connections.
On the nights that we knew our world was about to come to a hault the drill pretty much consisted of, 1. Braden presented with a cough, 2. usually at home oxygen would be applied, 3. listen with a stethescope to only hear upper air entry to the both lungs, 4. no air in the bases of the lungs heard. 5. 12:00am start physio therapy, chest percussion, 6. ventolin mask applies, more physio 7. chest vibration and coughing exercises started and increased to every 1/2 hour, 8. 2:00am oxygen saturation checked sat 89%, 9. oxygen increased and physio continuous 10. mucomist applied, increased coughing, listen to chest with stethscope, no air entry heard in lower lungs....call MacMaster ICU
2:30am, pack up Kailey and drop her off at nana's and papa's...off we go to the hospital with oxygen intact, Braden slightly reclined, breathing rapid, shallow and struggling.
By this point I would be in tears, because our world once again was going to be tipped upside down, we would be living in a hospital room, juggling two lives..one at the hospital and the other at home. We would loose sleep, loose time with Kailey and loose time with eachother. There was no time to talk to one another, when I was leaving day shift, Paul was coming in for night shift. We would pass one another with a quick chat about our days, Braden's medical update and Kailey's emotional status. We "hated" that world, we dreaded it every time we heard a slight cough. Unfortunately the reality being...we could loose him this time! Seriously, his blood oxygen levels would drop dangerously low, and he would be put on life support...he was 3 years old! Who wants to face that? We live constantly with a sick, upset stomach and a lump in your throat the size of a grapefruit. There is no sleeping, the phone could ring at anytime through the night, and what if I need to go back there? This life would last as long as 2 months at a time usually 2 times a year, some days good and some days not so good.

This one particular time, Braden was about 5 years old and Kailey was 2 years old and this memory I remember started at about 11pm. It started the same as any other time, with a cough. It progressed through the night. Braden was so little, he was still proportioned body wise but his weight was so low. Everybody know's inorder to fight pnuemonia you need some body weight and strength behind you! Deep down, we knew Braden was crashing quickly he just couldn't maintain his breathing, he was failing and so were we. I remember being in his room, the lights low it was quiet a typical little boy's room, sesame street character's looking at me all was so innocent. Except in this adorably decorated bedroom this little boy was fighting for his life. We were not new to this scene, we had dealt with it a hundred times. I sat at his bedside consistantly, listening to his chest, not hearing much air entry. So I would resume chest physio and start pounding on his chest...hoping we could unblock his bronchus which was blocked with a mucous plug, maybe we could break it down and he would cough stong enough to clear it. We tried and tried to break up that mucous plug with medication, oxygen and lots of physio and repositioning. Nothing worked, as the night progressed we tired and so did Braden. I knew we were loosing this battle, but damn it, we did NOT want to be admitted to that hosital, we were fighting so hard to avoid being admitted...Braden was getting so tired and I was about to have one of the biggest emotional breakdowns that I have ever had.
Out of fear, anger, desperation and fatigue, I fell to the floor with exhaustion..physically in pain, emotionally empty and mentally defeated. With Braden in my arms, literally un responsive, due to his body being drained I held him and deep down with the most fear ever felt screamed at him with so much anguish "Braden Breathe, Just Breathe"...my little boy did not have the strength any more to draw in, I was terrified.
We got the air bag, was about to dial 911...then he breathed.
It was not strong, but his saturation came up to a better reading..we were stuck,
if we called 911, they would transfer him to Cambridge hospital...oh god, that's just a waste of valuable time. We called MAC, and spoke with the paediatric on call intensivist. He told us to bring him in ourselves..it would be quicker than waiting for a ambulance from Hamilton, and he would meet us in ICU. Just so you understand, we would never have transferred him ourselves if he wasn't stable enough to transfer. He did perk up a bit, his color resumed somewhat and his sat returned to 93% and I can't remember how much oxygen we had him on. He was stable enough to drive to hamilton. Of course once we got him there, they intubated him and he was sedated, and a good, long nights sleep was had...by him!
This situation is terrifying for any parent, and I understand that we are not the only one's dealing with children who are medically fragile. It was frightening for us, every episode posed a life threatening ending. Just so those of you reading can understand that back then, Paul and I were trained thoroughly in paediatric ressucitation and life sustaining training. We were very capable to handle these situations..with saying that, nothing ever prepares you for dealing with the aftermath. Good night my friends..and god bless!!