Fwd: CODE RED!!! 3 1/2 y/o Cole ~ "horrible day" ~ kbryson24@hotmail.com - from Pastor Linda in NJ

[Patty]

Patty in Sunny Tucson
All truth passes through three stages...
First, it is ridiculed
Second, it is violently opposed
Third, it is accepted as being self-evident
Arthur Schopenhauer
"The truth shall set you free"

-----Original Message-----
From: Nathaniel & Margaret Williams <n...@hal-news.net>
To: 'The Family of Yahvah' <n...@hal-pc.org>
Sent: Wed, Aug 15, 2012 4:35 am
Subject: CODE RED!!! 3 1/2 y/o Cole ~ "horrible day" ~ kbry...@hotmail.com - from Pastor Linda in NJ

Thank you, Linda, Carole

Love/hugs, Nat & Margie

From: LINDA...@aol.com

Sent: Monday, August 13, 2012 8:20 PM

Subject: CODE RED!!! 3 1/2 y/o Cole ~ "horrible day" ~ kbry...@hotmail.com

 

 

...PLEASE PRAY...SOOO  SAD..........LORD PLEASE TOUCH THIS CHILD AND HIS FAMILY.....WHEN WILL THE CANCER CURE BE FOUND.........???

---

From: CGold...@aol.com
Sent: 8/13/2012 9:16:10 P.M. Eastern Daylight Time
Subj: CODE RED!!! 3 1/2 y/o Cole ~ "horrible day" ~ kbry...@hotmail.com

 

Dear Lord God!  we urgently pray for this little child, Bryson, who is struggling

just to breathe due to all the damage his lungs have sustained from his treatments.

We pray with all our hearts that he will tolerate the bi-pap, recognize that this machine

is helping him, and that he can stay on it until new lungs become available for him

very soon!  We pray as Katie prays.... that if there is another child who will be

called home to You in a short while, You will please help his or her parents to reach beyond

their own grief to give the gift of life to another.

We know and believe that "all things work together" and we pray that prayer

fervently right now, Lord!

 

Thank You, Father, for all You have done and all You will yet do.

carole in seattle

 

 

kbry...@hotmail.com

8/13/2012 5:49:10 P.M. Pacific Daylight Time

 

Written 10 minutes ago

Today has been very rough

Please visit Brysons new site where I already wrote the update. I couldn't copy it right now and it was easier to paste the site name

www.colespages/org/babybryson  (this did not work for me.. but I finally accessed the site and offer this link which may or may not work!     Cole's Pages    )

I will continue both sites right now but please check the coles page site out, on there there is also a "shop of items where a percentage goes to us" and a place where you can donate online. These were wonderful resources that I thought would be great to have.

Keep storming the heavens

(taken from new page...)

Horrible Day

Monday, August 13, 2012 7:38 PM

As I think back over my very first entries on caringbridge, when Bryson was first diagnosed with cancer, I remember saying that, that, was the worst day of my life. And then each day we got more bad news felt like the worst day again and again. Over the last 3.5yrs of Brysons journey we have had a lot of "worst days of our lives" today included. I guess ultimately the real worst day was the cancer diagnosis because all of those other days stem from that first day, including where we sit now waiting in St. Louis, 500 miles away from home, friends, and family, waiting for donor lungs.

Like I had updated a couple days ago, Bryson had begun really struggling again to keep his oxygen sats where they should be. The decision was made to do his IV steriod burst 5days early (they had decided last month to a burst like this each month to hopefully buy him more time off the ventilator) Since we've been here Bryson has responded well to any kind of steriod burst so we were hopeful that soon we would be feeling comfortable again at where he stood respiratory wise. Unfortunately the day of the first dose things seem to only get worse. He began to drop his oxygen sats into the 80s even when he was asleep and not exurting himself at all. His coughing attacks were worse and he was needing the bag and mask blown in his face to help him recover. He was getting more scarred during them and so were we. After the second day (sat) that evening it finally seemed like things were turning around and maybe the steriods were kicking in, he was starting to sat better and his heart rate was better. But the next morning (sun) he was right back to struggling. The day pretty much went the same, struggling all day and finally a break in the evening up until about 6am today. Starting early this morning he started droping into the 70's just sound asleep. Once he woke up we couldn't keep his sats above 85 (which was already lower then they normally like him, above 90) unless we were holding the bag and mask up to him the whole time. He was getting agitated about that which was only making it worse. We were at a point where there had to be some kind of intervention and we knew we didn't have many choices. First we tried a cpap like support that can go through his special cannula he was getting his highflow through. That only made things worse and he was dropping to the 60's and fighting me having the mask over his face. In the middle of this he also needed and IV right away because his IV had come out over night and we hadn't replaced it yet. Not only was he already struggling but he is worse when he is upset and now we had to poke him and try to keep him oxygenated at the same time. They got the IV in and the doctors were really to just intubate him right then. We discussed trying the regular bipap one last time ( this one he doesn't usually like and gets more worked up with so we didn't know if it would work) The doctors first thought was we will probably have to sedate him to even give this a chance to work, but I asked that we at least let him try really quickly with a sedation med available that we could give if it didnt work. They agreed and Bryson settled into it pretty well and his oxygen levels and heartrate started getting better. It was a horrible few hours and this time we barely avoided an intubation, the tubes were out and ready, and code meds were drawn up for him. All I kept thinking was this could be the last time I hear his beautiful little voice, because if he gets intubated we will quickly have to move to a tracheostomy, and they feel llike he probably won't tolerated enough of an air leak around it to be able to talk. Let alone the thoughts of what if they have a hard time intubating and what will happen because of how compromised his is. We desperately didn't want to be in this situation before he got his lungs. With statistics not in our favor we were praying and hoping for the best senerios going into transplant, which would include still be mobile and not ventilated. We now know we are at a cross roads where it is not feasible for him to remain on bipap 24hrs/day and we will probably have to make a decision to put a trach in. That is also of course if he continues to tolerate the bipap and doesn't have another bad spell because now we have no more options left but intubation.

I think where me and Scott struggle the most about the decision is that even though his lungs are terribly sick and he going down hill quickly, you wouldn't know it if you looked at him. He remains his spunky self, yelling at the doctors and nurses "no no no" and "stop it please" bobbing his head to his "songs" being goofy with us and his priceless "I love you mommy's and I love you Daddy's" It is harder then words describe to make a decision that could take some of his spunk and livelyhood away from him. We both said if he was lethargic and laying in bed miserable it would be a easy decision but to think of what he will loose, what we will loose, is beyond heartbreaking and awful. There are all kinds of thoughts, like will he tolerate getting used to the trach and be able to come off sedation easily, how will he cope if he can't talk to us, when talking is what everyone in the unit knows him for. And the horrible possibility that if an offer came right after the surgery to put a trach in we might have to turn it down. All of this is just too much, its not fair that he is in this situation after all he has already fought and overcome.

Not a day goes by that we don't realize the blessing that he was 2yrs out of treatment in July, and still remains cancer free. And even though all this is in the forefront we know what a big accomplishment that is. We just hope and pray with all our hearts that he has the chance to keep living and celebrating beating one more thing. If 10wks ago you would have told me we would be talking tracheostomy for Bryson and possibly emergently intubating, even that we would be so desperately needing lungs I would have never believed it. I look back to how we felt when we came to St. Louis and how we weren't even sure they would think he was bad enough yet. I was looking at pictures from our make a wish trip in May and my heart was hurting just thinking how much has changed in this short time. I desperately want to be able to take Bryson back there, with no oxygen and enough energy to run around and put this behind us. So please continue to storm the heavens for Bryson, I know God can hear us and can grant Bryson his miracle.

Dear Lord I pray not to speed up the process of another small childs death or wish a death upon a parent, but I pray that the family that is already struggling with letting there child go, a family who, for some tragic reason, will loose their child today will be touched by you Lord and give the greatest gift of life from their tragic lose and let their child become a hero in their death. Please Lord, you know where this perfect match for Bryson is, please let this be in your will to let him live.

 

Thank You, Blessed and Risen Savior, for hearing our united prayer.

carole in seattle
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