[AzNASCARfan]

Things can change so quickly... I saw this post on my daughters page yesterday and meant to post it to the group because it was a good explanation of how Jaxson has lived for the past 7 years now... I think I was probably already a day behind and I got busy with work and forgot to post it. In a separate text, she told my wife he was up to 60ml continuous feeds and they were only shooting for 65ml as a target. They even mentioned possibly discharging him in a couple weeks.I think I was probably already a day behind and I got busy with work and forgot to post it.

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. It’s 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, it’s going to be so weird when he doesn’t have to rely on it anymore! So close!!

[FES0844]

Prayers up for Jax. Amazing little boy. God bless.

[left that other site]

Wow...thanks for the update. There has been so much weird news that we need to keep being reminded.

Prayers up for Jaxson!

[RoseofTexas]

Please know that I’m praying for him daily!! God bless our little Jaxson!!

[Bigg Red]

Prayers for this dear child and for all of you.

[fieldmarshaldj]

Continued prayers for Jaxson.

[generally]

Grateful for the update.

More prayers up!

[nclaurel]

Thanks for update. Prayers.

[TalBlack]

May the Holy Spirit be with Jax and his family.

[prisoner6]

Prayers continuing.

[Flaming Conservative]

Lord, have mercy on this child and his family, and heal him. I plead the blood of Jesus over them. Give them faith, hope, and the peace that passes all understanding.

[laplata]

My heart goes out to brave and remarkable Jaxson and you all.

Prayers continue.

[eldoradude]

Thanks for the update Az! Keep on praying for the little guy...

[stars & stripes forever]

FATHER GOD,

Thank You for Your continued love and care over Jaxson and his family. Bless each one of them and give them strength to see the ups and downs of Jaxon’s recovery through.

Regulate the fluids in Jaxon’s body. Allow him to breathe normally so he will not need a tracheotomy. Surround Jaxon with Your ministering angels.

Thank You for the good plans You have for Jaxon and the testimony of this loving family. You are faithful.

In JESUS’ Name we pray. AMEN.

[Exit148]

Prayers continue for this dear little boy and his family. And that the good Lord will lead and guide his doctors.

[FreeperCell]

Hope you get good luck. Prayers!!

[LYDIAONTARIO]

Poor little child going through so much! And i was just lamenting our kitchen floor rotting away and the upcoming expense! Makes me realize my problems are so trivial! Praying for this boy and his family. May God give them healing and strength!

[annalex]

Lord Jesus Christ, give strength to Thy servant Jaxson.

In the name of the Father and of the Son, and of the Holy Ghost, amen.