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. Older posts about other procedures can be found earlier in the blog or by links in the sidebar.

Monday, November 20, 2017

Welcome Home Byron!

Byron left the hospital yesterday in New York about 2:00pm.  All weekend he was determined to go home, told anyone who would listen that he was going home, and sure enough it happened!  It would have taken three-four days to get readmitted to Blythedale so we decided it was time to go home.  When Byron arrived at the hospital via ambulance on Friday, Bob forgot to grab his shoes and coat, so when we left the hospital Byron looked like this! (in my shawl and hospital socks)





But when we finally got home, after stopping at Blythedale via Uber to pick up all our stuff, he looked like this:



The journey is not over, it just relocates at home.  He will now have Physical Therapy and Occupational Therapy locally at the Center for Discovery and in January we will go back to the surgeon to have everything rechecked.  Then in about 6 months he will have an EEG to determine if the seizures are truly gone. If they are, he can be weaned off the seizure medicine for good. 💗

Byron may also get some home instruction this month and will start school again in January after the school holiday break.



Going Home?

Byron is incredibly homesick and is literally begging to go home.  I would really like to honor that if at all possible.  So I have asked if it would be possible to release him to home from here at Columbia today, rather than transfer us back to Blythedale.  I think Byron is ready, and I also think I am ready. When I say I am ready, what I mean is that I think Byron is medically stable enough for me to feel safe bringing him home. The medical facilities where we live are in general pretty good, but they would not be able to support Byron if something went awry when we got home.   But he seems good, the incision looks excellent and he is on an oral course of antibiotics for any further infection.

The team here has to evaluate him to see if he can go home and that includes getting a PT and OT evaluation.  I asked them why they needed that if Blythedale cleared him to go home on Wednesday and they just said it's procedure.

So it's Blythedale or home.  I hope to know soon.

Sunday, November 19, 2017

This "Awkward" (Byron's word) Weekend Adventure

Precaution is an important word in medicine.  "We are doing this as a precaution" is a term I have heard frequently on this journey.  Emergencies are truly rare.  I am beginning to understand that this entire weekend side trip away from Blythedale was not necessary but a precaution.    And while I totally agree with and understand precautionary measures, they keep us all safe in most instances, I will remember this weekend as a bit annoying if it was all not necessary.

It turns out the bacteria they found in Byron's blood, which had them very worried yesterday, was from bacteria that was on his skin when they took blood in the ER.  He did not have a fever when we arrived in the ER (and still doesn't) , so he was already doing much better in that regard  The doctors here have told us every day the the increase in white blood cell count is due to Bryon being on steroids.  And, I posted a picture of Byron's enlarged glad yesterday on the Hemispheretcomy Facebook Page (yes there is one - there are two actually) and one mother said that after her daughter's surgery, she had an enlarged gland for a year.  So, enlarged gland, bacteria in blood, increased white blood cell count, MAY turn out that to be a big nothingburger.   Which will be awesome and 😖 at the same time. 

Byron is doing SO well, everyone here and at Blythedale has said that.  Last night the doctor told me "Byron looks amazing, so just based on how he is presenting, there is not really too much that can be wrong with him".

If we keep on this positive trajectory, we should be back at Blythedale on Monday and home soon!

Here are a few words from Byron:










Saturday, November 18, 2017

No News Yet

Still no definitive news on what is causing the infection.  I keep asking them to tell us how they will know the antibiotics are working as the only other outward symptoms are a swollen lymph node.  They answer that question by saying that if Byron was REALLY sick he would act differently, and certainly not be so perky.    I hope they are right - of course one has to have a level of trust in the doctors or there would be no peace of mind at all.  But I keep asking questions and hopefully we will get an answer.  They are doing another very sterile blood sample this evening because they were able to detect some bacteria in Byron's blood from the last draw, but that was in the ER and everything was a little crazy then.  We should have some more answers tomorrow.



Tonight my brother Jeff is staying in the hospital and I am in a nearby hotel.  It's sooo nice to be in a place with out beeping.  I really need the rest.  I'll go back tomorrow morning.

Byron and Jeff escaped the room earlier this afternoon.  I love it that at Columbia you can get permission to wander the halls and the main lobby.  Byron has been begging for us to put up our Christmas tree and I keep telling him "After Thanksgiving" but today he found one, and it's huge.






Admitted

It's an EXTRA large coffee, bagel with cream cheese kind of morning (diets be-dammed).


When you are ten years old, being in a New York City emergency room, arriving by ambulance no less, and staying up until 1:30 in the morning, life seems pretty ok. 

They admitted us to a regular floor at 1:30 in the morning.  By 2 am he finally fell asleep.  Then of course they make rounds at 6 am and woke us all up!  But we are in the right place.

They have Byron on IV antibiotics and the neurosurgeon who was making rounds this morning said it looked like the lump behind his ear is getting smaller.  Byron has MUCH better energy than last night as well.   Last night he was totally wired.  That could be the steroid wean or the stress of moving here, nobody is really sure. His pupils were extremely dilated as well.

But here he is this morning, sweet and loving, eating his bagel and cream cheese and smiling.  We should know more about what it next later this morning. YAWN 😝

Friday, November 17, 2017

A Little More Info

There is a large lymph node behind each ear, into which the brain fluid drains.  This is what is enlarged behind Byron's right ear.   This is similar to when you have a cold or sore throat and the gland enlarges in the neck.  This gives the doctors a hint that there is some sort of infection in the brain.  This is coupled with the increasing white blood cells, which are clearly fighting some sort of infection.

This is all not terribly uncommon with this kind of surgery but unfortunate.  If the little lymph node doesn't reduce in size by morning there are other tests on the table, a test for Meningitis which involves a tap for spinal fluid, an MRI or a cat scan.

This is an inner city emergency room and yet the energy is fairly calm.  The air quality is not great, it feels a bit low on oxygen, but in general it could be worse.  It's not like a TV Emergency Room at all 😁

We have Siddha Yoga chants playing on loop and this is helping.  Byron is much less agitated now.  He has had a little melatonin for sleep, and the other medicines will be coming shortly.

I believe he will sleep well in this little private cubby.  Me - well we'll see.  I don't have a bed or even a comfortable chair, but there are actually entire families in the hallways so we are grateful.

Just got a cot!  All is well now - zzzz

Back at Columbia

Byron was transported by ambulance to Columbia ER to check out why his white blood cell count is climbing.  We are currently in the emergency room and have been for several hours.




They took blood and then we had to wait for the results to come back.  Byron's neurosurgeon was in surgery so they couldn't ask him to look at the results until he finished. 

Mostly they think he's is doing great which is good.  They are worried about a very enlarged lymph node behind his right ear.  And that his white blood cell count is 26, was 23 this morning, and should be 5.

At the nuerosurgeons request, they have decided to admit us overnight, but the hospital is completely full so we are going to spend the night in the ER.  Byron will be given IV antibiotics and then in the morning they will decide what to do next.  If the lymph is getting smaller than he can go back to Blythedale on an oral antibiotic.  If it is getting larger than more tests may be needed.

I am going to stay here tonight and Bob will take the car back to Loch Sheldrake. Byron is a little wired but in generally good spirits.  He really wants to go home so all this is seen as a major side track to Byron.  But the adventure continues! 

Infection?

Byron’s white blood  cell count is continuing to rise. It looks like we are headed to the ER after all. Will update soon.

Fever Down!

It looks like the 101 temperature that they recorded yesterday was a recording mistake on the part of a nurse.  That's the explanation they gave us this morning for why Byron's temp was recorded as 101.  Sheesh!  Byron's temperature this morning is 98.5, corroborated by his dad in a second taking.  From now on we are going to check and recheck every temperature for accuracy.  But this is great news!! Thank you for all  your prayers and good wishes!


Thursday, November 16, 2017

A Little Hiccup

Byron's fever spiked to 101 today so they took more blood in the hopes of identifying what is causing it.  We should know more when the results come back tomorrow.  The fever indicates that there is likely some kind of infection somewhere but they are not sure where.  If another fever spikes, e.g goes over 101 as it did today, we may be back in the ER at Columbia in New York for further tests.  Please keep all your prayers and good wishes coming Byron's way!

Because of the fever Bob and Byron had to hang out in the Cafeteria while they disinfected his room.


Wednesday, November 15, 2017

Moving Towards Leaving

The tentative date we are now looking at for transitioning out of Blythedale is Wednesday November 22.  Byron is VERY eager to go home.  This date is two days after the final dose of steroids.  The steroids help prevent brain swelling and they stop on the 20th.  Then we will watch closely to make sure once the dose is down, that he is still fine.  But I still have some other concerns.

1) Fevers are still between 99 and 100.  This can be normal for 2-3 weeks although all kids don't get them.
2) Byron has started to have a lot of trouble sleeping.  For the last two nights he has not fallen asleep until 11:30 or so and is getting very cranky again.  He has been taking morning naps.  I really want to make sure he is sleeping before we go home.  The doctor told me this morning that it could be the steroids.

I called his neurologist today to see when we can get an EEG.  I really would like to see that the seizures truly have abated.  It may be too soon for the test but it would be great to get an early idea.  It would make me feel much more comfortable about the sleeplessness to know they were not seizure related.

Other than that Byron continues to heal well.  He's eating everything in sight which is not typical for him and everything else seems really good.  


Monday, November 13, 2017

Byron Made a Video for His YouTube Channel

Byron has a YouTube channel called Byron Gamer Plus.  Today he made a singing video right from his hospital bed.  Take a listen... (and as Byron would say - "Subscribe and smash that LIKE button!")


Blessings Work!

I hear at least once a day from a doctor or a nurse "I have never seen a child recover from this kind of surgery so fast!"  Byron is only ten days from a major surgery, probably one of the largest surgeries a child can have, and he is doing so great.  A doctor today told me that children are usually quite out of it for a week to ten days cognitively.  They don't speak, can't remember things, and the personality is flat.  Today Byron passed all his physical and cognitive tests with flying colors.  Except for his greasy hair from the Neosporin, you might not know that anything had just happened.  And if this really is the cure for his seizures (we will know in a  few months when they repeat the EEG and MRI) then all has been a resounding success.

Anecdotally I can tell the seizures are better/gone.  He has no word retrieval issues, he is not stuttering, he is not vocalizing at random times and his energy seems 90% calmer.  If this is all we get from the surgery - I'll take it and it was worth it.




First Day of School and more

The day started out a little wobbly.  Last night Byron went to bed at 8:00 pm and was up again at 9:40 pm, 11am and 2am.  No real idea why and it did not look like there was any "seizure" type activity associated with the waking.  The doctor thinks it could be the steroids he is on causing the fitful sleeping.  His last steroid dose is on the 20th so that will be nice.

But because he didn't sleep well he was very cranky early in the day.  He napped at 10:30 am for about 45 minutes and that seemed to do the trick.  He has been chipper and happy the rest of the day so far.

Today he had one hour of private school instruction, and then he asked to go off to the school building.  They picked him up at 1:00 pm and he was there for an hour.  He really liked it.  He mentioned that his favorite things were the hamster and that they play a video game he likes called Roblox.

At 2 pm he was whisked off to speech and physical therapy.

Everyone thinks he is doing really well.  They keep asking me(?) when I think we are going home.  Today I said that I thought it could be two weeks from today - November 27th - but they told me that they are really not sure he needs to be here that long.  His physical functioning is almost where it was before the surgery, and we can get  physical therapy as needed at the Center for Discovery in Hurleyville.  But, in my opinion,  Byron needs to be medically stable before I would agree to take him home.  That would mean no more fevers or swelling.

They are going to have a team meeting about Byron's case tomorrow so we will see.  It would be really nice to be home for Thanksgiving I have to say.

Byron's recovery truly is miraculous.  I never imagined it would be this easy (knocking on wood superstitiously).  It is the boundless Grace and Blessings that carry us along. 💖💖