Tuesday, December 29, 2015

December 2015 - Fire House Tour

Merry Christmas and Happy New Year!!

We saw Santa at the MDA Xmas Party (thanks Shriners!!)
Christmas 2015 was filled with love and many cherished memories.  Now with the his new wheels, he is learning to drive faster and with more confidence.
Mid December, as Bryce began his Christmas vacation, I was fortunate to have Fire Station 51 give us an awesome tour!
Driving through the fire house was hugely impressive for young Bryce - this was 4 days after they came to our home and rescued us from a respiratory emergency.  Bryce loved seeing the cool medical equipment, their uniform, their work out room and the amazing hoses, ladder truck etc.
Cheers for TVFR!! Our heroes!
The folks at Tualatin Fire and Rescue helped us twice in 2015 - The last, the scariest on December 13th, was Bryce's first MUCUS PLUG - really - terrifying. I had no idea this was a possibility for kids with SMA 1 - I never heard of a mucus plug and later I learned from other blogs, other mother's that this is one of the leading causes of death for children with this disease. Not being there or acting quickly enough and a child would stop breathing - In my case, Bryce said, mommy get my brace off, he started coughing, I picked him up from his brown tomato chair where he had been playing on his play tray, and at 100%, our cousins had just left from a wonderful play date.  - I hooked him up to pulse ox after removing the TSLO, it read 60, I was shocked, Bryce looked good, still talking a bit, I told my mom to get the oxygen - we had no ambu bag in our home, I tried to get him to help me suction out the blockage, we had everyone in the house, dad, grandma and I tried to get him oxygen, he improved to 80, we continued to suction, I used a plastic spoon to keep his teeth from biting the suction syringe, I finally removed an incredible amount of mucus from the back of his throat, he was still in the 80s.
The Key: I got the mucus plug out just in time, but it felt like an eternity with his alarms going, the numbers at the lowest I have ever seen, 60 for 02 -
The paramedics came in,  one young man didn't hesitate to take my word on hooking him up to oxygen with a cannula, Bryce's numbers immediately went back up to the 90's - Then they with my lead carried him to the gurney, we got into the ambulance, he started our normal routine of nebulizer / albuterol emergency - Bryce stayed fairly calm, and when we headed out of our neighborhood, his pulse normalized to 190 - his O2 continued to rise, Bryce stayed strong. He gave me the thumbs up as we loaded up into the ambulance. He was so aware, so positive, and he listened and responded so well to the treatments.
Bryce was a champ, paramedics heard me singing Rudolf to Bryce as we were heading to Doernbechers, then, they all started singing with me - Bryce was smiling and his heart rate started to decline, I was so grateful that these super heroic TVFR guys were so experienced with families and kiddos.  Bryce still looks back and remembers how the guys showed him videos on their cell phone
of start wars and frosty the snowman. 
Gratefully, we arrived at the hospital and Bryce was normalized, and doing well. Gave us all a scare, but a mucus plug it was; grateful I was to have learned  about what it was prior to the incident, but until I experienced this - I had no idea -
We now have an ambu bag in our home. NW Medical had not provided us with the proper one, it was one for a trach patient. WE now have extra oxygen and are working on getting a second stand alone o2 tank with a regulator and cannula.


Monday, December 7, 2015

My little Jedi "Fall Fun!"

May the force continue to be with us during our journey of SMA 1.
Grateful are we for Bryce's health.
Dressing up as a Jedi for Halloween,
 writing his own name,
 going to his preschool friend's birthday party at a horse camp
baking cookies
playing with cousins.

Bryce's quality of life is that of fun, use his hands and arms as much as possible and having time for breaks, resting during the day, doing activities on the couch or in bed.


At Sofia's Birthday Party

Driving around the neighborhood

Bryce and his wheelchair

Bryce is  zooming around town!!
Thank you Nu motion and Shriners. Thank you to all care providers family and friends
The first photo to the left, is day 2 at home with the electric wheel chair.
I signed the documents to start wheel chair training on January 10th 2014.   After months, at Shriner's, practice and navigational training, Oct. 28th, the wheel chair arrived.
Private health insurance paid for this chair. The state of Oregon does not pay for children to have an electric wheel chair because they don't feel its necessary for kids to drive and move independently when they have a care provider who can push them in a manual chair.
(a lobbying motion / bill - appeal I will attend to later in life)
Bryce loves being able to move around by himself, go to school, drive the local stores, drive around the library, Memorial Park, etc.