Bryson's Blog

Living with Trisomy 13

Friday, June 30, 2006

Very Scary Day

Who could ever guess that something so sweet and tiny can have a problem so big and scary.

Today was a very very scary day. Bryson stopped breathing 8 times. His apnea problem has really come to a head and we are so thankful Travis is here for his son. He had to administer CPR to him a couple of times and rescue breathing the other times. Dana, Travis and I have been holding vigil all day and all night. Travis has gotten only a couple hours of shut eye in the last 24 hours and Dana can't remember when she slept last. It's now after 2:00 a.m. and I'm beginning to wonder if I could sleep after how rough the day has been for little Baby Boy Bryson. Besides, it's my shift to stand watch.

During these episodes, he will arch his back, open his eyes as much as he can, although he has micropthalmia, and hold his mouth open while holding his breath. He will turn purple and his lips blue. Dana coaxes him to breathe, I pray and Travis does what he does best, save lives. The U.S. Army has trained him well to work in the trenches. And believe me, this is as tough a battle as any conflict.

To top it off, the oxygen ran out and more was in the process of being delivered when another episode was happening. I don't think the delivery guy had really witnessed someone's dire need for the oxygen tanks he delivers and he looked a little tense. After I signed for the delivery, he said "God Bless the four of you" and booked it out of here.

Tomorrow Paula from Hospice will be coming by. I've not met her yet. Everyone from Kid's Path (a division of Hospice of Charleston) has been great. Amy has been one of our Nurses and Gretchen is our Social Worker. They have been extremely helpful, caring, kind and compassionate people. I admire what they do.


Anonymous Anonymous said...

We have these similar moments. We had hospice for 5 months - Anthony will be 12 months next week and we still have these episodes.

My prayers are with you all - how can I help?

Janina Arritola
mom to Trisomy 13 son Anthony

2:16 AM  
Anonymous Anonymous said...

Dear Bryson: This is your "great aunt" Carol. I want you to know that we all have anxiously awaited your arrival into this world, and have prayed for you long before you made your entrance on the scene. We always knew you would be very special--why just look at your Mommy Dana, and your Daddy, Travis. What a great pair they are and they have been so excited about you since they first knew you were being formed (in that secret place). Dear little Bryson, I'm so sorry that things haven't gone as planned. It's not your fault. Life is just like that sometimes, and nobody can ever explain it. You know, if there is anything in the world that we can do for you, we will do it! I saw the pictures Grandma Dori sent of you, and I just fell in love with you right then and there. You are such a beautiful baby! You are such a big boy! My goodness! 9 pounds plus! And you have the most beautiful skin I've ever seen. And such gorgeous cheeks! You look so soft and cuddly, and I wish I could hold you in my arms. I'm glad that you have so many people around you that love you and can take care of you. We feel so helpless when you are having your "cranky" times, and it's hard for you to tell anyone how you are feeling because you are so, so small. I'm praying for you all the time, and I know that God has wrapped His loving arms around you, and will not let go--ever. You are safe and whole and perfect in God's eyes--and in our eyes, too. You are our first little baby for such a long time--and you will always be very special to us, I want you to know that. You are loved, near and far little Jellybean. You have touched all our hearts and we love you. Hang in there, little buddy. Everything's going to be alright. Love, Auntie Carol

6:39 PM  
Anonymous Anonymous said...

Hello everyone, I finally have found an oppertunity to leave a message on this beautiful site dedicated to my son. This is Dana and the time being so early is that Travis and I have traded shifts so that we can watch him continueously 24 hrs a day. Bryson was cheating death more times than I could have ever thought humanly possible. During the course of 2 1/2 days he stopped breathing and was blacking out and was in dire need of cpr more times than we can recall. It was completely terrifying to witness the light in your childs life flickering to very dim to what at times looked like there was no lights on at all. But being a Nault has taught me a few lessons in strength and endurance. This little boy fought for his life and won!!! Right now he's peacefully sleeping and breathing normally!! His Daddy helped him to live because Bryson wanted to live, and Bryson and Travis worked together to survive the most harrowing experience. I am watching over my two strong men, as they sleep now I am able to feel relief that all will be well for a little while longer.

5:04 AM  
Anonymous Anonymous said...

Dana and Travis,
I met you on Christmas Eve at Colleen and Daves in Elkart. Love that little guy that was given to you both. God has a plan for each one of us. I know it's going to be tough. There's reason for everything. I spent 2 months in a burn unit, and I still don't know why things like this happened to me or you. Stay strong and try to pray every day. Hugs and Kisses to all of you.
Love from your cousins,
Robin, Bill, and Rob
(The 7 cats, dog, and 4 fish too!)

9:55 AM  

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