Posted on 12/21/2019 8:24:09 PM PST by AzNASCARfan
I am trying to get the prayer chains going again... For those of you unfamiliar with Jaxson's journey, We have had some previous prayer threads for him over the past few years... Here are links to them to give you some background on Jaxson's condition if you don't know it.
July '16
October '16
February '18
March '18
My Daughter, Katie, had a page that has his history on it up to about May '18 here Jaxson's got guts until she stopped updating there and moved it to Facebook... I don't think she has done much updating anything since she started school and working awhile back.
Continued prayers for Jaxson. What precious pictures of brother and sister, too. Happy Birthday to your grand-daughter!!
Perhaps 'mimi' can read him some childrens stories to read to him to allay his concerns about the 3AM wake up ?
Young Jaxson remains in my daily prayers as well as my nightly prayers.
He is a warrior who has endured a lot, but story time with mimi could ease him back to sleep.
Just a thought..
Heart warming to see Jaxson and his little sister together!
Thank you, Lord, for this wonderful moment in the lives of these sweet children.
Just wanted to give a quick update and say Praise the Lord for progress. We always knew this part would take time, just glad to see him doing good and making progress.
Here is Katie's post from Facebook - this cute little giraffe mask is the bipap that he wears at night and according to the pulmonologist he may need it for the next six months to a couple years but it makes me feel more at ease when it comes to discharge and is sleeping without nurses/monitors.. plus he seems more rested during the day so thats a good thing. Though it will take him some time to get use to.
The transplant PA also just came up and talked to me and todays scope showed some inflammation in the intestine which could indicate mild rejection but theyre not too concerned. Theyre thinking it could be a virus but are still treating it as mild rejection and increasing his steroids & anti rejection med. The CT scan from the other day showed a hematoma but it was nothing they wanted to drain & theyre just treating that with antibiotics & he hasnt had much pain in that area the last couple of days.
Tomorrow he will have a GJ tube put in to replace his gtube. This will allow his tube feeds to bypass the stomach and go straight into the intestine. Theyre thinking this will help with stomach pain and decrease the possibility of vomiting due to the bipap and how much air may enter his stomach from it.
More prayers for sweet Jaxson. In Jesus name.
Such a sweet boy and continued prayers for him.
You are very busy with the little ones at your home and it’s understandable why you can’t always give updates.
Prayers ongoing.
Still praying for our Little Warrior!
Prayers.
PRAISING THE LORD for marking improvement for Jaxson. Declaring GOD’S Promises of healing over our little warrior. May his life bring hope to many.
Prayers for this sweet boy
Godspeed, Jaxson, honey.
Rest well tonight.
Praying for Jaxson every day. Hes an amazing little boy! God bless you.
Still in our prayers
Glory be to Thee o Lord. Please continue healing Thy servant Jaxson.
In the name of the Father and of the Son, and of the Holy Ghost, amen.
Then I get up today to my wife saying they have taken him back to the ICU because he was retaining fluid and that he needed to be on the Bi-Pap during the day too. Katie said he was also having some anxiety issues and asked for the bi-pop mask. Now we hear that they are thinking they will most likely have to do the Tracheotomy they were hoping to avoid too. This poor kid, it seems like it is never ending for him...
I am going to go ahead and share her post anyway, just to provide some understanding of how Jaxson has been living his whole life to any of you that are interested... as I mentioned once before in a post, he won't eat anything because he has never had to. He will drink water and also lick salt off french fries or potato chips, but he has issues with food that Katie calls texture issues. He just does not like solid food in his mouth.
The yellow bag on the left is TPN. Its what has been feeding him for the last seven years. Vitamins and minerals that your body would normally digest from food is in this bag and infuses intravenously. It has literally kept him alive. The purple bag on the right is formula. It is pumping right into his small intestine and he is digesting it! He is so close to coming off TPN, its going to be so weird when he doesnt have to rely on it anymore! So close!!
Prayers up for Jax. Amazing little boy. God bless.
Wow...thanks for the update. There has been so much weird news that we need to keep being reminded.
Prayers up for Jaxson!
Please know that I’m praying for him daily!! God bless our little Jaxson!!
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