It’s the end of a looooong summer for all of us. We are celebrating the end of Byron’s surgical journey. All of the things Byron loves are on the docket; soup dumplings, Broadway with Dear Evan Hanson, time with Uncle Jeff and Alessia, watching his brother Ryan complete a 10k in Central Park, The Stranger Things experience and more…
The great news is that Byron’s fevers seem to be gone! Now the real healing can begin. He’s pretty tired but in most ways he’s back to himself.
Maybe, just maybe we are rounding the bend with the fevers. Down to 100 with no Tylenol. Byron is much more like his old self. Energetic, loud 😂 funny. All in all a good day.
It’s very strange how Byron is still experiencing fevers almost all day ranging from 100-101.9. We are really hoping they abate soon. But he’s generally feeling much better.
Taken this evening
Today Bob took Byron to NYC to get the 60+ staples removed and to meet with Byron's epilepsy specialist. The removal went well with no pain (PHEW) and we have a slow weaning plan to get Byron off of the seizure medicine. I think the weaning schedule is too slow but I always do. He is on such a huge dose that I really want him to be finished. And, if the surgery was a success and there are no more seizures, we will know it once the medicines are removed.
The only minor hiccup is that he is still having fevers. The surgeon did not seem too worried about it. He said that they should level off soon. Hopefully the antibiotics will help.
Byrons attitude remains excellent. He has never complained except during the first few days. He takes this challenge in stride like most things. Truly a remarkable human being. Even being his mom, I'm not shy saying that :)
Sent the following letter off to the school today from the doctor.
Today Byron visited his pediatrician to see if we could uncover any reason for the fevers. Bloods were drawn and we just received the results. The blood tests look excellent. He has a slightly elevated white blood count (14.5 for those who know this stuff). This is actually really good. Ten days after his first surgery his WBC was 28. He also looks like he might have a very slight bacterial infection. So as a precaution she is prescribing an antibiotic. We agree with that recommendation. Other than that, his energy and alertness seem to improve every day. Thursday to the city to see the surgeon to have all 68(!) staples removed.
For the first time in many days Byron’s fever broke and returned to normal. His behavior changed quite significantly. He seemed more like his old perky, friendly self. He even wanted to play video games 😳😄(there needs to be a mixed emotions emoji). This was on Tylenol but in previous days the Tylenol only brought it to 100-101. Now the goal will be to keep it this way!
Fevers of 101 ish up to 102 all day. Tonight he said he felt “vulnerable.” It’s a good thing to acknowledge feelings like that as a 15 year old yet I feel him. What an ordeal to go through, not once but twice. I wish things could be different for him, but as a doctor once told me “you must play the hand you are dealt.” And he does. And we do.
Fevers went up to 102.2 today but came down with Tylenol so we are still ok.
Healing is a *#%!
No crazy trip to the NYC Emergency Room is in our plans for today, thank God! Byron's fevers are down significantly and his eyes are brighter. Praying for this to be our future.
UPDATE: Heard from the surgical team. Watch how he is overnight. If things stay the same or improve there is nothing to worry about and he is indeed getting better. If the fever gets up to 102.5 or 103 and he is lethargic, nauseous or vomiting then drive to the ER in NYC.
Fevers are too high, now at 102. Have a call into the neuro at Columbia. It's tricky because you don't know who you will get. Hopefully a smart, savvy genius who will tell us what's what.
This was the sky the night we got home. Beauty and fire.
Despite all the great news there are still things that make me worried. Byron had a high fever last night, 101.8 and a lower fever this morning. 99.7. Still having neck pain on the right side, light sensitive and pain behind the eyes and scarring area. If anything shifts and gets worse I will call the on call neurologist.
Byron is doing so well. No fevers. He had some pretty intense neck pain this morning so we took him to have a massage and that really helped. Tomorrow he gets some physical therapy and acupuncture. He is spending alot of time in bed resting but his appetite is good and his systems seem to be coming back online.
