Blog Overview


Byron Pratt, age 10, has Cerebral Palsy (Right Hemiplegia) caused by a stroke before birth. In 2015 he developed seizures and a rare form of Epilepsy called ESES, neither of which responded to treatment with medications. On November 3, 2017 he had a Functional Hemispherectomy. He has had many other major procedures in his short life including surgery for exotropia in both eyes, tonsils and adenoids removal, Selective Dorsal Rhizotomy (SDR), Constraint Therapy, and heel cord lengthening. The recent posts are about the Hemispherectomy and what follows. Older posts about other procedures can be found earlier in the blog or by links in the sidebar.

Thursday, June 23, 2016

Walking

Remarkably, Byron has had almost no pain.  We left the hospital with codeine and valium but did not use either which is great.  Just a couple of doses if Ibuprofen when needed but that was it.

Today was the day I got him up and walking.  He was VERY resistant.  The fear of pain was actually the hardest part.  But he is getting now he is doing a great job.




Tuesday, June 21, 2016

Everything Went Smoothly!

Thank you everyone for all your kind words and blessings!  The surgery went amazingly well, without a hitch.  The doctor was very happy.

Byron threw up twice on the way home (in the cab) but we were well prepared with buckets and cloths.

Byron is eating now and said "all this is so relaxing!"



We go back in one month to get the cast off.  At that time he will be measured for a brace and a new cast will be put on for two weeks until the brace comes in and is fitted.  I hope that one will allow swimming!

Byron is well and home

All went well. The surgeon said the surgery went beautifully. Byron is very tired but ok.  More in a while.  

Byron is out but still asleep

Napping!

And he's out. Good to sleep while we wait. 

Waiting

Going to be about 2:00pm. 

Monday, June 20, 2016

Surgery Time

Byron's surgery is scheduled for some time around 1:00 pm tomorrow Tuesday.   He needs to check in at 11:00 am.  This means no food after midnight and no water or drinks after 9:00 am.   He is going to be an unhappy, hungry camper.  They explained to us that they have to take the babies first.  Must be a lot of babies

But today he is happy!  He doesn't seem nervous at all and informed us that after the surgery he is going to want Mountain Dew and Chips. These are two special treat only items.  And he said he will want to rest for awhile ;)  "Before"  foot photos at end.



Left Foot Before

Left foot on right  - notice minimal weight on it and heel up






Wednesday, June 15, 2016

Surgery on Tuesday

It's been a while since I have posted a medical update about sweet Byron so this one will have two!

Byron is one year seizure free - YES!!!!    We shall see how the coming year unfolds but we are so happy with this news.   It is rare to control the seizures on the first try with the first med  - we attribute it to Blessings and Grace and LOVE.

Byron pushing a cart with TWO Hands at Home Depot last week


The next news is that Byron is having surgery on his foot on Tuesday, June 21.  The head of Pediatric Orthopedic Surgery at Columbia, Dr. Joseph Hyman, will perform the surgery.  It is a Tendon Transfer and Heel Cord Lengthening.

Basically, from what I understand, the tendon on the inside of Byron's left foot is pulling his foot inward and it is very strong.  The outside foot tendon is weak.  So they will move the interior tendon to the outside of the foot.  This will pull his foot forward and straight.  Then they will lengthen his heel tendon so that he can easily get his heal down when he walks.

This surgery is quite common after SDR surgery  (link to SDR post)  which Byron had a couple of years ago.  SDR reduces the spasticity, but if the tendons are already short at the time of the SDR then they often don't lengthen on their own.  Byron's Physiatrist determined that no amount of physical therapy or bracing would correct the problem as it is now - so surgery it is.


Dr. Hyman thinks this is the perfect age for the surgery and the prognosis is good.  Byron will be under anesthesia for a couple of hours and end up in a cast.  He will be in this walking cast for one month so no swimming (bummer!).  And he should be up and around the next day.  It's amazing how fast children can heal.

We don't know yet whether it will be in-patient or out-patient.  Because Byron has seizures, it all depends how he comes out from the anesthesia,  whether he will be released or not.

I'll post updates as we go.