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Testing Gwendolyn’s Ambu Bag Before An Emergency

November 27, 2010 by Bill Strong

Let's face it, emergencies are a fact of life for SMA families and we've had our share of urgent medical situations over the years with Gwendolyn -- collapsed lung, regular mucus plugs, power outages, sudden vomit with fear of aspiration, forest fires, battery failures, life-critical equipment issues, etc. So far we've managed to pull Gwendolyn through them all -- knocking HARD on wood -- but looking back we have definitely been more prepared for some compared to others and we've tried to learn from each experience.

Gwendolyn's SMA continues to progress and while she is stronger in some areas compared to others, she is extremely weak from a respiratory standpoint. At this point she is more or less 100% dependent on breathing using her Trilogy bi-pap machine. This leaves her -- and us -- pretty vulnerable to emergencies that involve her breathing and bi-pap machine. One backup alternative that we have is called an Ambu bag. It's basically a hand-held device that would allow us to try and manually breathe for Gwendolyn if something happened to her bi-pap machine. (You've probably seen this acted out on the various medical dramas as someone is led into an ambulance.) Since Gwendolyn's diagnosis at 6 months old, we have been carrying one in her stroller (so everywhere we go) and we have one permanently affixed to her machine cart at home.It could literally be a life saver for Gwendolyn. (Oh and as a tip to SMA parents -- we have the tubing all set up so we could also bleed in oxygen if needed. The last thing you want to have to do in an emergency is look for all the tubing and parts.)

We've had to use it before and somehow we fumbled through it. But at the time Gwendolyn wasn't as bi-pap dependent so we had a buffer where she could be off bi-pap for some time until we got her assistance. We don't have that luxury anymore. Within minutes Gwendolyn would need breathing assistance. We realized that, given the circumstances, it would be best to test the Ambu bag BEFORE we actually needed to use it again in an emergency.

So, last night before she went to bed we both gave it a try and Gwendolyn did amazingly well. We tried to make it fun, let her squeeze the bag herself, did it on Daddy first, etc. And within minutes she was ready to try it. Her patience and bravery through this stuff is remarkable. Not only did the test go well for both of us, but Gwendolyn actually wanted to try it again and again and again. She was enjoying it smile I just love that girl so much...

We feel a bit more confident that if an emergency arises where we need to use the Ambu bag that we'll be more prepared. Maybe more importantly we know that Gwendolyn will be semi-comfortable with the idea of us breathing for her with the Ambu bag. I think we'll try and continue to test her breathing using the Ambu bag from time to time. It can only help our confidence and her comfort.

Talk About It

Gwendolyn IS amazing..but it's the three of you together, and the boundless courage and love that bond you - you are the true model for all of us - you are my heroes. Just reading this simple entry, then re-reading it and realizing the incredible importance of it, but then how you made it a fun and appealing experience for Gwendolyn - this entry for me is so indicative of your whole lives - you live every second on the edge, yet instill every one of those seconds with calm and love and happiness and complete devotion to making each of those seconds a wonderful one for your child. Amazing....
Posted by Sheri on 2010-11-27 09:47:03
Great post you guys! Having everything hooked up in case of emergency is KEY! I SO wish there was a course in SMA for every new family because many unfortunately learn the hard way when their child needs O2 or a piece for their equipment. Hugs to you all and Miss G!!!
Posted by Sarah Turnbull on 2010-11-27 13:14:50
You three are a team. Everything you do, you as a team for the betterment of Gwendolyn. There is a reason you've been blessed with the last name of Strong. It reminds of class I took in college, The Sociology of Englsih history, and how surnames were assigned based on occupation and such. in this sense Strong definitly fits. --Mari
Posted by Mari aka "Thorney" on 2010-11-27 14:42:15
We really need to get an ambu bag to have on hand at our house. Could you please let me know the info for ordering one of these?? I would really appreciate it. Every nurse we've ever had has asked if we have one and each time I have to tell them no! Thanks for your help! Tera (Reagan's mom) http://reaganleigh.blogspot.com/
Posted by Tera on 2010-11-27 16:44:09

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