October 29, 2019

Okay, folks, time for a long update.

Oct. 17, visiting Yaya, my sister #2.

Braxon, the four year old great nephew, appears to finally be on the road to recovery.  But the road has been a very tough one.   Numerous twists, turns, ups and downs.

 After my last post about him, Brax went home on October 16 but had to return within 2 days, on October 18.  He was getting worse.  He could no longer walk and could barely sit unassisted.  He was crying in pain.  A check with the doctors and the answer was get him back to the hospital in Oklahoma City.

Oct. 18, 1:05 PM

Upon arrival at the hospital that is 100 miles from his home, he had a lumbar puncture and full spine MRI.  The MRI initially looked clear.  Lumbar puncture showed the white blood cell count rose from 4 to 44 between Wednesday tests to tests on Friday.  Inflammation in spine and brain and the antibodies that his body created to fight the virus were now attacking him.  No longer dealing with the initial post-viral cerebellar ataxia but an autoimmune issue.

Day 3 of steroids IV

The medical staff were leaning toward autoimmune Encephalitis.  Tests were run to confirm the AE.  IV steroids were begun on October 19.

In addition Braxon had continued just staring into space and being unresponsive at times. Doctors wanted an EEG to check for the possibility of seizures.   This is a 4 year old child.  3 attempts were made for the EEG, none successful.  Seizure medications were begun, also.

Day 3 of IVlg, poor baby.

The IV steroids started on the 19th were showing little if any  improvement.  Brax could not walk more than 4 or 5 steps with assistance.  He would be exhausted by the efforts of walking or sitting.  He had to be placed on IVlg therapy for 5 days.  Intravenous Immunoglobulin Therapy (IVlg) is explained here.
The staff did so much to help with all the pain and confusion for this sweet boy.  His dog at home is Ranger.  He was given a stuffed Little Ranger.  Little Ranger had his own IV cover.  Brax was given equipment to give Little Ranger IVs at the same time he was getting them.  Brax said Little Ranger said it hurts some.  Each of the IVlg's took 2-4 hours.

Mom, Brax and Kenadi on a visit day.

During this time Great Grandparents and Aunt Paige were caring for Braxon's older sister, Kenadi.  She came down with a stomach virus.  A few days later Aunt Paige found head lice on Kenadi!  PE is probably where she contacted them cause none of Aunt Paige's children had them.  Never the less, 3 houses and at least 2 cars had to be treated for lice.  My 79 and 83 year old sisters did a house and 2 cars.

Mean while back in Oklahoma City Braxon is improving is small steps.  Physical therapy is begun.  Brax had another ride in one of the cool little cars.  He rode up to the window, looked out and tears fell from his sweet eyes.  The next day the nurse saw to it he was able to drive the car outside.

After attempts at oral meds on Monday
Nana said, "he is pissed''.

At the end of the 5 days he was to be transferred to a children's' rehab facility.  October 28, 2019 was to be the transfer date.

First  morning at rehad.

That transfer was dependent on Brax taking oral meds.  He fought every attempt and would through up all meds as soon as swallowed.  Yes, they tried hiding in food, bribes, and you name it.  He was determined to be in control of something. 

Finally the doctors and the rehab facility worked out the problem.  The Rehab facility agreed to let him be moved to rehab with the IV from the hospital.  You know, rules and regulations to avoid lawsuits or something.

The following is his mom's latest post:

"Today has been eventful ♥️
Braxon is walking unassisted! 🙌
It is like a one year old that is just learning to walk, but he's walking UNASSISTED and that is a HUGE improvement 💙
His speech therapist said mentally he is testing at a 4 yr level, but that isn't where he was before this happened. He was advanced to 5-6 so he is still regressed from his previous level but knowing he didn't go backwards is amazing 🙌🙌

He is back to refusing meds by mouth. Even disguised. All med orders had been switched to oral. Tomorrow we are trying to disguise them all, which is ALOT. If he doesn't cooperate we will have to move to an NG tube so he can get his medication.

My prayers are for him to cooperate taking the medicine and continue physically improving 🙏"

A later post Brax's Mom said, "He took his second dose tonight in a slush puppy 😂 whatever works 🤷🏼‍♀️"

Braxon painting this evening.

And then this happened back home:

Yes, that is older sister Kenadi in an ER room.  She was on a skateboard and fell on her elbow.    My niece was at the rehab facility to relieve her daughter, Heather, from Braxon care for a few hours.

About 9:30 PM this was posted on FB:

"Leigh Ann Littrell Womack

Well... when it rains it pours.
Left Oklahoma City early to get back to Lawton since kenadi Grace (not so heavy on the Grace) crashed her skateboard and hurt her arm.. waiting on X-ray results.
#sigh

Update: Fluid and blood in elbow. Can’t see a break but there could be a hairline fracture so they are splinting it and treating it like a break and we follow up with ortho."

And you thought you were having a bad month.  One of my friend's grandson went through a disease that eventually took his life at 10.  So, yes, things could be so much worse.

Take care out there.