Friday, June 21, 2013

Bipap

"How do you do it Jenni?" my friend asks.  "how do you get up day after day and be such a great mom?"  My answer, "What keeps me going, is my love for my son;  when Bryce is gone someday, I can look back and say I did everything I could to make him the happiest and most loved child ever."

that being said, being alone at the hospital with the nurses learning to use bipap is very hard
Today is 9 months exactly since we got his diagnosis - it is true - I am much more 
at terms with this disease- yet moments like learning bipap is not easy
 

Last night watching Bryce cry and scream as they introduced us to the bipap was really hard. We took a break after awhile and the super great team coached me through the steps. In theory, this machine helps the child breath better especially when used at night; bipap will aid  breathing when he initiates, but if he doesn't it acts like a cpap and forces air into lungs - He tolerated it pretty well, but its a huge life-style change. Our pediatrician has been discussing this with us since the end of April - so its the most logical next step in the care plan.

I sat for a bit holding Bryce and thinking each night for the rest of his life being hooked up to a bipap doesn't really seem fair.  Caring for a child with SMA isn't really fair and really often times, life isn't always fair, It is what it is. In truth, I wouldn't wish this "SMA" on any parent.

I am not angry, though I have reasons to be - I was angry at this disease from Sept, till about January. Now, that I have my mom's group, a church that is super supportive, and great friends, coping is easier.  My friends tell me my greatest strength in life is  being positive, and forgiveness. There really is no other way to live life! Bryce is my joy! My life!

The past couple of weeks its been great to have so much love and support from friends;  have Kara on occasion come and stay with us.  Love to you all. Thanks St. Mathews and thanks Trish. Thanks neighbors, thanks Teresa, Claire, Martha!!  I am grateful  my smiling child with good happy energy. I am grateful for Laurel and Cher - their new mom energy keeps me so motivated.  Surprisingly,  Steve came last night  from 7 to 8 to play and be with Bryce- short visit, but I am always delighted to see Bryce have daddy time.

2 comments:

  1. Sorry its such a struggle, the video is heartbreaking, but hopefully this will be the best thing for Bryce's health. Our love and best wishes for you and Bryce.

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  2. Bryce is lucky to have such a strong, loving mom. His smiling face is just one of the signs of that. All our love! /Lotta, Ty and Erik

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