Uncertain Beginnings…..Part B

When Ben was about three or four months old I started to notice a pattern in his breathing while he was sleeping.  It went like this….breathe, breathe, breathe, stop…repeat.   At that point I brought it to his pediatrician’s attention.  “I’m worried about his breathing” I said.  “He keeps stopping, then it seems to restart”.  She did take my worries seriously, but it is a slow process of getting to the right specialist in the right amount of time.  (This is what I find frustrating with our medical system!)  When I initially brought his breathing to her attention in November, I was referred to the ENT (on a rush) for an appointment in January.  The ENT also took our concerns seriously and booked us in for an overnight sleep study (on a rush) in February.  The results from our sleep study were marked URGENT! and were forwarded to our pulmonologist that said our study was highly irregular – he was having about 50 or so events an hour – meaning his oxygen levels decreased significantly.  He then referred us back to our ENT saying that Ben needed a scope to figure out what the heck was going on.  The bronchoscope was booked for April and I was immensely relieved.  We arrived at the hospital on the day of the scope and while we were in the parking lot the hospital called to cancel our appointment state that there were no ICE beds available.  We were rebooked for Monday, May 23rd.  I was pretty upset about the continual delays.  We would never make it to that appointment.

I took the kids to Ben’s music group the morning of Friday, May 20th.  I was a little concerned because Ben seemed to be getting a bit of a cold.  Through the morning I noticed that his congestion was getting worse.  I didn’t know what to do.  I was worried if I told the doctor, his scope for Monday would be cancelled, but I was also worried if I didn’t, he would be at risk when he was under anesthetic.  I decided that I would pop by his doctor’s after music class and let her listen to him.  We finished music and met with his speech therapist for a little while, so we were later than anyone else when we were leaving.  I put Ben in his car seat and was looking for Hannah’s shoes when she said to me (she was three) Mom – you need to look at Ben.  I looked up at him in his seat and I could see that my normally calm child appeared to be sobbing at the top of his lungs, but there was no noise.  I knew something awful was happening.  I pulled him none too gently from his car seat and yelled out “someone call 911 – my baby can’t breathe”.  The receptionist didn’t hesitate and was dialing the second I said 911.  She then yelled upstairs for help.  With the seconds it took for me to glance at him and pull him out of his seat, he was unconscious.  Two ladies came down and began to do CPR on his blue lifeless body.  I remember one of them saying “it won’t go in” as she tried to blow into him.  I was doing a bunch of things during this time….I was talking into his ear saying things like “hang in there Benjamin” – “you’re going to be ok”….”do you hear me?”  I was also trying to contact my husband on my crappy cell phone with no reception =- I would replace it with an iPhone a month later – never to look back.  I was also (this is weird) trying to stack the car seat and find the kids stuff.  I have no idea why that was so important at the time, but in my head I thought that as soon as the ambulance came we would run out and race to the hospital.  The ladies were taking turns trying to blow and also trying to use pain stimulation to get a response from him.  Eventually it was the pumping of his 11 pound chest that allowed air to barely come in.  He was blue and looked awful.  I knew nobody could survive that.  A first responder showed up and cut off his clothes, continuing to monitor the almost invisible rise of his chest.  The ambulance did finally come 400 hours later….ok…it was 9 minutes…but…well you know.  I was ready to football launch him into the vehicle and hit the gas, but apparently that’s not the way these things work.  Anyways, they stabilized him to the point we were able to transport him and we headed to the hospital where he was admitted under an ALTE (Acute Life Threatening Event).  During the first two hours his eyes would flicker around and he wasn’t anywhere I could reach him.  What are the repercussions of this I wondered?  We were admitted and would spend the next month trying to figure out what happened.  What we ultimately discovered was that his trachea (air-throat) was quite soft.  This is why he had so many events when he was sleeping – his trachea would relax and he would desat (his oxygen levels would go down) like crazy.  His innominate artery from his heart was crossing over that trachea and slowly strangling him.  The phlegm from the cold pinched off his trachea that day and caused it to collapse.  We eventually figured it out and we did surgery to take that innominate artery from his heart and sew it into his chest wall.  His MRI came back basically problem free, which was a huge relief!

I should mention a few things here.  We were well taken care of once we were admitted, but I feel that this was an entirely preventable incident.  I think a lot of the problems with our system is that it is just so over utilized and busy that there is no way they can prioritize everyone.  Sometimes I think our healthcare system is similar to the forest fires in Fort McMurray.  It’s impossible to save a house when the town is burning all around you, but it hurts like heck when it’s your house that’s burning down!

I saw this ad today from the main children’s hospital in Toronto and found it touching.  It shows mothers in a new way – not the Superhero strength we are labeled with…and I like that.  What it doesn’t show is the power of the people behind us pushing us through those difficult times.

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8 thoughts on “Uncertain Beginnings…..Part B

  1. Courage doesn’t always roar , it is a little voice that keeps you trying one more time..
    I watched the video, it shows the emotional aspects and the anxiety the moms are experiencing when their dear children are sick and you Karen faces it everyday. And you do it with LOVE, GRACE and HOPE.
    May the rest of the week brings you some lifting news.

    1. Well said Solange! The video is very powerful! You amaze me, Karen and I’m filled with love and admiration for you: your advocacy for Ben, your determination to know and study the medical and physiological aspect of Bens challenges and your strength to pursue what is best for him! I so appreciate these updates, Karen and an eye opener onto yours and Ben’s day. xx

  2. My heart hurts for you, Benjamin, Hannah and Jesse for all of the trials and tribulations you have faced. May you have a blessed Easter. I won’t tell you stay strong because you are one of the strongest people I know. I will continue to pray for Benjamin’s healing and strength for you.

  3. I just read your post out loud to Michael, I barely got through it without crying, Mike is amazed you are not an alcoholic. Ben is destined for Great things, he is a tough little boy and so lucky to have you, Hannah and Jesse

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