Bryson's Blog

Living with Trisomy 13

Friday, August 21, 2009

Important Day

Saturday, is a really big day. The doctors will extubate Bryson to see if he can tolerate being 100% on his own breathing with no tubes and vent and if he can protect his airway with coughing and swallowing. We will also be able to tell whether he can be further assisted with a traecheostomy to keep his airway clear. It is our hope that he will be able to do this all without a traech. Then come Monday, there will be another MRI to see if damaged areas of the brain are rejuvenating and healing. If he can breathe, swallow and cough and/or with the assistance of a Traech, he may be able to come home with hospice care. He will likely have to have a nurse 24/7. Nutrition at this juncture is planned only with an NG tube as we don't want to subject him to surgery for a GI tube at this time.

We don't know at this point what Bryson's long term development will be like as he is back to being pretty much as he was at 2 weeks old. We are holding out hope that some of the little boy we knew just last week will begin to shine through and bring us laughter and joy again. It will just take time, love and patience. This family has all of that and more. Because Dana & Travis are such wonderful parents to Bryson, they will fight to challenge him as that's how he got as far as he did and still exceeds everyone's expectations.

The doctors are pleasantly surprised at how Bryson has been progressing and they are with us in challenging Bryson to get better. I think they are beginning to find out what a true fighter he really is. Just telling them that he is a fighter isn't enough, they had to see it for themselves, and they have.

I have the utmost respect for the team treating Bryson at Madigan Army Medical Center. They have been caring, compassionate and honest with us every step of the way. They have answered every question we have made to them with candore.

I hope to be able to share further good news with you all soon.

Thank you for continuing to pray for our Bryson. Your prayers are being heard.


Blogger Unknown said...

bean showing everyone what a perfect little angel you are keep showing them that you are a strong little boy. i love you my little superman.. i am so proud of you in every way. i will see you the weekend of the 5th of september. love beany bean.

1:26 AM  

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