The River Church Community

Hi friends and family,

I want to thank you again for joining me, my son and Nathan's family in prayer.  I visited Nathan last Sunday... Nathan's family is praying and believing that Jesus will restore him again no matter what the doctors say... 

Here is the latest update. Thanks again for your company during this time and prayers of petition on behalf of baby Nate.

 

with love,

Jocelyn


 

----- Forwarded Message ----
 


The past few days had been physically and emotionally exhausting and spiritually draining.  Nathan had suffered setbacks after setbacks; he continues to struggle with his life.  On Friday, they rushed him to OR to put an "external ventricular drain" (EVD) system because the VP shunt he had is not working and the build up of fluids in his head is causing more pressure.   For a while, the EVD was working and was relieving the pressure but on Saturday, that too, is clogged.  He had 3 CT scans on Saturday, and finally Dr. Fullerton came to the hospital to talk to us.


The major veins they worked on during the angioplasty about 3 weeks ago had narrowed and clogged.  Dr. Fullerton said the venous pressure have remained high causing more bleeding, strokes/infarcts in Nathan.  She said that the damage has been extensive and that he will not be able to survive this.  She reminded us about the time in April, when Nathan was first diagnosed, that his case is so unique and they won't be able to treat the
"hundreds" of malformations in his head.  But, she said, "he surprised us" last July when the majority of fistulas were treated with embolization.  She was glad that Nathan was able to give joy to everyone up until now.  She said, they did everything they can do and even if he stopped breathing and was put on breathing machine, his brain had already been severely damaged.  She suggested that we don't put a breathing tube in case he stops breathing and pull out the drain and the feeding tube.  She just encouraged TJ and Jaimee and the family to just hold him and be with him because she thinks he will not last long.

Sunday was a little promising day; we refused to take the external drain out (she said it will hasten his decline if we take it out) even if it didn't work all day Saturday.  We were surprised when it drained a little bit on Sunday and his ICP (intracranial pressure) had gone down to normal levels.  By the time the evening nurse came on, he was surprised that Nathan survived the day and his vital signs were better.  He even had reaction in his pupils! to the amazement of the doctor on call.  TJ, Jaimee and Dani decorated Nathan's room with Christmas lights, a miniature Christmas tree with Christmas music on the background.  He had always been fascinated with lights that we kept telling him to wait 'till Christmas and I'm going to decorate our home with so much Christmas stuff. 

Yesterday, Monday, they had arranged a meeting with the family.  Dr. Fullerton, Dr. Auguste, the social worker, discharge planner, someone from Compass Care (Palliative care staff and several other doctors and staff were in attendance.  Dr. Fullerton relayed another heartbreaking news, Nathan suffered severe brain damage to the front of his head and she does not think he will ever be normal again; that he will remain in a vegetative state.  They were advocating that Nathan be placed at George Mark's House (Hospice for children).  They don't think Nathan will ever get better; he wasn't even a candidate for rehab. 


What do we say about all this?  I feel so numb, so helpless, so downcast; we are so tired and weary to the point that I don't even know how or what to pray.  Nathan has put up a good fight from the beginning of his precious life.  Some thinks he needs to just rest in the Savior's presence but for me, I am still believing he can get well.  Every waking moment, my heart cries for our perfect little grandson, hoping to see him run around, giggle, go to school, play; to see what a normal child can do.

Isaiah 40: 28-31 has never been that meaningful to me until now.  "He gives strength to the weary and increases the power of the weak....but those who hope/wait on the Lord will renew their strength...."  We are facing a new challenge with Nathan; we are still blessed because today is a new day, and His mercies are new every morning.  We had resolved to trust in the Lord and keep on believing that He would heal and restore Nathan to the fullest.  Please continue to pray for more miracles for Nathan so His name will be praised.

To God be the glory forever,
Kit and familly


to view his website: www.nathanj125.com