Sunday, November 5, 2017
Sunday - Part Two
The physical therapist came and got Byron to stand and sit up in a chair. His face is still swollen on the right side but everyone is saying it is so much less than any other patient they have seen with similar surgery . The nurse this morning was quite shocked at how good he looked!
Byron has been complaining about how hard it is to chew. We learned just today (not sure why they didn't tell us this before) that they had to cut the muscle in his right jaw, so chewing may be difficult for three or four weeks. We will ask the hospital to keep the food as soft as possible.
It looks like they will not move him downstairs until tomorrow. They want to get an MRI done before they move him. The MRI will check to see that everything on the right side is disconnected.
Sunday- Part One
This morning they took the bandage off. Everything looks great. Everyone is amazed at how little swelling there is and last night he had no fever at all. Today they will likely move him out of ICU to the regular floor. This is the floor he has been on many times for EEG and other tests.
Saturday, November 4, 2017
Saturday Part Four - Eventide
Byron is much better this evening. His pain has abated considerably and he is now awake more. He's been awake since about 5 pm consistently. He ate 1/2 of a milkshake and one chicken nugget - yay!!
Just now he was remembering a picture he saw this evening of his brother's dog Penny and I saw him genuinely smile for the first time. This is the picture he was remembering.
One of the things they told us to expect was a big fever. But as Byron is breaking all the "rules", he has only had a fever of 99.5 which is perfectly ok.
He is also able to push himself up in bed using both of his legs. I am confident that when they get him up tomorrow he will walk just fine - fingers crossed!
Just now he was remembering a picture he saw this evening of his brother's dog Penny and I saw him genuinely smile for the first time. This is the picture he was remembering.
One of the things they told us to expect was a big fever. But as Byron is breaking all the "rules", he has only had a fever of 99.5 which is perfectly ok.
He is also able to push himself up in bed using both of his legs. I am confident that when they get him up tomorrow he will walk just fine - fingers crossed!
Saturday Part Three - Pain
We had been warned in articles we had read and accounts from other families that had gone through Hemispherectomy, that at some point there would be pain - and a lot of it.
The pain began around one. They weaned him off the morphine because they want him to move today. They gave him his first dose of Oxycontin soon after but it didn't help. It was painful for me to watch. He kept begging for them to give him back his "button" which I know gave him great relief every time he pushed it.
BTW - I would not recommend a surgery on a Friday, as the weekend is kind of sluggish in the ICU. It took them a very long time and much insistence on my part to get the additional pain medicine. Finally, after about 45 minutes, they brought him some more Oxy.
After about 5 minutes this extra dose kicked in and he was able to fall asleep. During that horrible forty five minutes I was able to make him feel better by getting into bed with him and putting my hand on the skin of his back and sending him healing thoughts. Up until this point he hasn't wanted me to stand too near the bed or put any hands on him.
He's peacefully sleeping now. He hasn't really eaten anything yet except a tiny bit of pancake. Chewing hurts. But he is drinking and he passed gas, which apparently is a very big deal and a good sign. 😝
When Byron woke up we chatted a bit and I put some on video. I would only make a video with Byron's consent, and Byron is usually pretty eager to make videos. The lights are quite low but as you can see in the video, he is really speaking and moving well.
The pain began around one. They weaned him off the morphine because they want him to move today. They gave him his first dose of Oxycontin soon after but it didn't help. It was painful for me to watch. He kept begging for them to give him back his "button" which I know gave him great relief every time he pushed it.
BTW - I would not recommend a surgery on a Friday, as the weekend is kind of sluggish in the ICU. It took them a very long time and much insistence on my part to get the additional pain medicine. Finally, after about 45 minutes, they brought him some more Oxy.
After about 5 minutes this extra dose kicked in and he was able to fall asleep. During that horrible forty five minutes I was able to make him feel better by getting into bed with him and putting my hand on the skin of his back and sending him healing thoughts. Up until this point he hasn't wanted me to stand too near the bed or put any hands on him.
He's peacefully sleeping now. He hasn't really eaten anything yet except a tiny bit of pancake. Chewing hurts. But he is drinking and he passed gas, which apparently is a very big deal and a good sign. 😝
When Byron woke up we chatted a bit and I put some on video. I would only make a video with Byron's consent, and Byron is usually pretty eager to make videos. The lights are quite low but as you can see in the video, he is really speaking and moving well.
Saturday Part Two
Since I arrived this morning Byron has mostly been sleeping. He wakes up for a minute or so and then goes back to sleep. I am sure that sleep is very good for healing but I am also guessing that this is the first time in a very long time that Byron's sleep has not been interrupted by the spiking and seizures that plagued him for so long. He seems so at peace.
Saturday Part One
Byron seems very good today. He's tired but alert. He's very grouchy but always says please and thank you :)
He is drinking on his own. He chewed a tiny bit of chocolate chip pancake. He said that chewing hurts which is to be expected.
They are weaning him off of morphine. Since last night he had a little button that only he was allowed to use. He could push it whenever he felt pain and then it had a lock out for ten minutes. The parents are not allowed to push it by law which I think is pretty cool. They are transitioning him to just tylenol in a few hours.
He is drinking on his own. He chewed a tiny bit of chocolate chip pancake. He said that chewing hurts which is to be expected.
They are weaning him off of morphine. Since last night he had a little button that only he was allowed to use. He could push it whenever he felt pain and then it had a lock out for ten minutes. The parents are not allowed to push it by law which I think is pretty cool. They are transitioning him to just tylenol in a few hours.
His eyes are sensitive to light so we have the blinds drawn and the lights off. But he says his vision is ok. I noticed he is tilting his head to the left to watch the iPad screen and I'll pay more attention to his eyes as he is feeling better. But he very strongly said that his vision is not bothering him as of yet. This is more great news!
All of the blessings and prayers from around the world are still gracing us every second. Your love is very palpable. Thank you again SO much!
Friday, November 3, 2017
Surgeon Follow Up
The surgeon came by to see Byron in the ICU (Intensive Care Unit) about two hours after the surgery. I told him that Byron was speaking in full sentences and could move his left leg and arm, and smile. He said , "Certainly not on cue, just involuntarily right?' I said, "No, we asked him to move them and he could." The surgeon was very surprised by this. He said "Well don't be surprised if he loses that agin in a day or two, but if it comes on this early there is a very high likelihood that it will come back." He also let us know that Byron is on a very high dose of steroids to reduce swelling. He told us that he will be VERY cranky in the coming few days. Byron has been a bit cranky but hey - he's just had brain surgery. I would likely be cranky too!
The epilepsy doctor also came in and she was very pleased at how alert and present Byron was.
Bob is staying there tonight and I'll go back up in the morning. It's been a long but very WONDERFUL day!
The epilepsy doctor also came in and she was very pleased at how alert and present Byron was.
Bob is staying there tonight and I'll go back up in the morning. It's been a long but very WONDERFUL day!
Byron is Doing so Awesome!!
I have read so many accounts of children who have had this surgery who are not able to talk or move for a really long time. Byron is talking and moving both his left arm and leg which is amazing!! He is also already being generally himself personality wise. He just asked for a pillow. He is speaking in full sentences e.g. asking us to pull his socks up. He has asked what time it is. I can not stress enough how extraordinary this is. I'll post more as he is less groggy. I also made a video which is below.
Major part of surgery is done!
They are just closing now and we should be able to see him in about an hour. Everything went smoothly and easefully. Depending on how long he takes to come out of anesthesia they will remove the breathing tube before we see him. I would prefer that!!
No real updates yet
The patient advocate called in to the surgery to see how things are going. The surgeon said things are going fine but has no idea how long it will be. So we wait.
Byron was great going in
At about 7:30 am, Bob went in to the surgery theater with Byron. They put Byron on a warm air bed as the room was very cold. He was relaxed and asking everyone whether they were going to put him to sleep now. He had a case of the hiccups at this point. As soon as the anesthesia mask went on his face, the hiccups increased. He said "It's not working!" A second later he was asleep. We should get an update from the surgery by phone soon.
Byron Has Gone In
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| 5:30 am Subway |
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| Bob suited up to go in for the anesthesia |
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| Byron and the Surgeon Dr. Feldstein |
Thursday, November 2, 2017
ZZZ
Everyone (except me) is asleep. 5:00 am wake up on the phone alarms. We will take the 1 train subway from 137th and Broadway (Byron loves the subway) to the 168th street stop at 5:45/6:00 am.
We are resting peacefully tonight knowing that we are held aloft by the blessings of so many. We feel all the love and blessings deeply, and what could have been a very stressful evening, is turning into a calm and hopeful night. Blessed night to all!
We are resting peacefully tonight knowing that we are held aloft by the blessings of so many. We feel all the love and blessings deeply, and what could have been a very stressful evening, is turning into a calm and hopeful night. Blessed night to all!
Surgery scheduled for 7:30am
We just heard that the surgery is scheduled for 7:30 am with an arrival time of 6:15. Regular medicines and food until midnight and nothing after that.
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| Dinner Happiness - at OSO on Amsterdam and 141st |
Settling In
We just arrived in NYC to our lovely Airbnb in Harlem. We will stay here through next week. We were greeted with pastries and drinks and a parking space across the street. Magic! We will learn around 4 o’clock when the arrival time is for the surgery, but a quick call to the surgeon’s office preliminarliy indicated that we arrive at 6:00 am for surgery at 7:00.
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| Bob is sleepy |
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| Byron likes it here! |
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