OK----nevermind---the first video didn't work. I was telling that she was going in for surgery and what they were going to do and then I told her to say hi to everybody. Then I turned off the camera then she started smacking her lips. So the second video is her saying hi to everybody by smacking her lips.
Wednesday, July 13, 2011
Videos before surgery
Here are 2 videos I took before she went in for surgery. You have to watch them in order. I turned off the video camera a little too soon on the first video. But she continued to do it on the second one. I asked her to say hi. I thought she wasn't responding, then right when I turned off the video she started smacking her lips like she was saying hi. So the second video is her smacking her lips saying hi to you!
OK----nevermind---the first video didn't work. I was telling that she was going in for surgery and what they were going to do and then I told her to say hi to everybody. Then I turned off the camera then she started smacking her lips. So the second video is her saying hi to everybody by smacking her lips.
OK----nevermind---the first video didn't work. I was telling that she was going in for surgery and what they were going to do and then I told her to say hi to everybody. Then I turned off the camera then she started smacking her lips. So the second video is her saying hi to everybody by smacking her lips.
ENT done
ENT is done. He traded out the left ear tube. He did not make a new incision. The old tube was a little blocked. He could see some spores possibly fungus. He said that cipro is good for bacteria, but won't touch fungus. So he wants to start her on some drops that are similar to vinegar. We will do the drops while in the hospital and might continue them at home.
He said the right ear looked good. He didn't do anything with it.
I have not seen her yet.
He said the right ear looked good. He didn't do anything with it.
I have not seen her yet.
Neurosurgery done
Neurosurgery is done. Dr. Walker said everything went good. Her catheter was nice and open. So she will only have the incision on the front, not front and back. He said that her previous pump was in the fascia (spell check), but now she has more fat. So he moved it closer to the surface of the skin. With it being deeper it makes it harder to find and reach the medicine port (to refill the medicine).
Also, I didn't know this...but rehab (the Dr. in charge of spacticity (tight muscles)) requested a larger pump be put in. The larger pump holds 40 CC of medicine. Dr. Walker said that it is not bigger around just a little thicker.
So due to the pump being moved closer to the surface and it being bigger it might be more noticable.
I'm a little frustrated that they didn't talk to me about the larger pump because her old pump held as much medicine as it needed to. She is on a fairly low dose such that when her pump is refilled we don't have to come back in for 6 months. Which is the maximum amount of time you can go between refills because the medicine doesn't last longer than that. So having a larger area to put the medicine isn't going to help us because she doesn't need to be able to hold any more medicine. Translation: It's not going to allow her to go any longer between refills.
But it's done now...what are you going to do. It's not that big of a deal...but they really should have talked with me about it.
Just waiting for ENT now.
Also, I didn't know this...but rehab (the Dr. in charge of spacticity (tight muscles)) requested a larger pump be put in. The larger pump holds 40 CC of medicine. Dr. Walker said that it is not bigger around just a little thicker.
So due to the pump being moved closer to the surface and it being bigger it might be more noticable.
I'm a little frustrated that they didn't talk to me about the larger pump because her old pump held as much medicine as it needed to. She is on a fairly low dose such that when her pump is refilled we don't have to come back in for 6 months. Which is the maximum amount of time you can go between refills because the medicine doesn't last longer than that. So having a larger area to put the medicine isn't going to help us because she doesn't need to be able to hold any more medicine. Translation: It's not going to allow her to go any longer between refills.
But it's done now...what are you going to do. It's not that big of a deal...but they really should have talked with me about it.
Just waiting for ENT now.
Summary of surgeries
Here is what they are doing today...
Dr. Walker (Neurosurgery) will be replacing her baclofen pump. She received her first baclofen pump in Mar 2005. The batteries only last 5-6 years. So the battery life is up.
Baclofen is a medication to relax tight muscles.
The baclofen pump is a hockey sized pump (like a feeding pump or IV pump) surgically placed under the skin in the abdomen. Hers is on the left side of her abdomen. You can feel it through her skin. From the pump there is tubing running under the skin around her left side and inserted into her spinal fluid. The pump delivers baclofen (medicine) through the tube into her spinal fluid continuously. You cannot feel the tubing.
She has scars on her front and back from the previous surgery. This time they will only be replacing the pump so there will only be an incision on the front. The tubing will stay the same.
It is a fairly long recovery. She needs to stay fairly flat on her back for quite a while...I can't remember exactly how long. I'll let you know when I find out. But she will need to be in the hospital from Today (WED) to Sat.
She has tight arms and legs and loose torso and neck. The baclofen pump is attempting to keep the muscles from getting contractures (tightening up so much that they can't be stretched out anymore). It is more effective on whichever limbs the tubing ends at...such as if it is lower then it works better on the legs and if it is higher then on the arms. Hers is low to help her legs. Which her legs are doing great. But her arms now have contractures even though we do botox and phenol injections to relax her arms. We debated moving the cathedar (tubing) up so it could help her arms a little more. But decided against it for several reasons...
#1) The Dr. wanted to leave it
#2) If it is higher it can slow breathing
#3) She already has contractures in her arms...if we move it to try and help the arms there is the potential that then her legs could get bad. If your legs/hips go bad then sitting in the wheelchair can become painful.
#4) they have the most problems with the cathedars going bad...if you have a good one, you really want to leave it alone.
The second thing they are going to do will be done by Dr. Park from ENT. He placed tubes in both ears in Sept. But she has still been having lots of ear infections. Mostly in her Right ear. But her most recent one was in her left ear. Remember she had Staph recently in her right ear and then east in her left ear. Anyway, he is going to go in under anesthesia and see if he needs to place larger ones or put them in a different location or what not.
Dr. Walker (Neurosurgery) will be replacing her baclofen pump. She received her first baclofen pump in Mar 2005. The batteries only last 5-6 years. So the battery life is up.
Baclofen is a medication to relax tight muscles.
The baclofen pump is a hockey sized pump (like a feeding pump or IV pump) surgically placed under the skin in the abdomen. Hers is on the left side of her abdomen. You can feel it through her skin. From the pump there is tubing running under the skin around her left side and inserted into her spinal fluid. The pump delivers baclofen (medicine) through the tube into her spinal fluid continuously. You cannot feel the tubing.
She has scars on her front and back from the previous surgery. This time they will only be replacing the pump so there will only be an incision on the front. The tubing will stay the same.
It is a fairly long recovery. She needs to stay fairly flat on her back for quite a while...I can't remember exactly how long. I'll let you know when I find out. But she will need to be in the hospital from Today (WED) to Sat.
She has tight arms and legs and loose torso and neck. The baclofen pump is attempting to keep the muscles from getting contractures (tightening up so much that they can't be stretched out anymore). It is more effective on whichever limbs the tubing ends at...such as if it is lower then it works better on the legs and if it is higher then on the arms. Hers is low to help her legs. Which her legs are doing great. But her arms now have contractures even though we do botox and phenol injections to relax her arms. We debated moving the cathedar (tubing) up so it could help her arms a little more. But decided against it for several reasons...
#1) The Dr. wanted to leave it
#2) If it is higher it can slow breathing
#3) She already has contractures in her arms...if we move it to try and help the arms there is the potential that then her legs could get bad. If your legs/hips go bad then sitting in the wheelchair can become painful.
#4) they have the most problems with the cathedars going bad...if you have a good one, you really want to leave it alone.
The second thing they are going to do will be done by Dr. Park from ENT. He placed tubes in both ears in Sept. But she has still been having lots of ear infections. Mostly in her Right ear. But her most recent one was in her left ear. Remember she had Staph recently in her right ear and then east in her left ear. Anyway, he is going to go in under anesthesia and see if he needs to place larger ones or put them in a different location or what not.
BG High
BG 117. A little high for her. As long as she gets her proglycem (medicine to block insulin) her BG usually stays between 90-110 which is normal. Without the proglycem it was bouncing around between 28 (super-dangerously low) and 280's (high). Low BG is more dangerous than high BG.
Hmmmm...I'm not sure...it seems like it would be low after not eating. Darn it...I think I'll have to call her endocrinologist in a week or two when things slow down. It's not terribly high, I'm sure it's fine. It has been as high as in the 300's (after surgery last time).
But maybe I need to do a week of testing every 4 hours to make sure her dosage of proglycem is still right (once she recovers). We'll see what she (endocrinologist-Dr. Murray) says. But that is something to worry about another day!!!
Hmmmm...I'm not sure...it seems like it would be low after not eating. Darn it...I think I'll have to call her endocrinologist in a week or two when things slow down. It's not terribly high, I'm sure it's fine. It has been as high as in the 300's (after surgery last time).
But maybe I need to do a week of testing every 4 hours to make sure her dosage of proglycem is still right (once she recovers). We'll see what she (endocrinologist-Dr. Murray) says. But that is something to worry about another day!!!
Surgery today!!!
I am off my game today!
Yesterday They called and told me that we were supposed to check in at 9 and scheduled for surgery at 11. So they wanted me to stop her formula at Midnight and stop her clear liquids at 8:00 AM. I said "Really?" We are usually the first case because of her hypoglycemia. So we usually check in at about 6 AM or so. The nurse on the phone said she would check for me. I said "It's okay if she's later, but then can we keep her feeds going until 2 or 3?" She said she would check.
She called back and said to stop feeds at 2:30 and stop clears at 8:30. And the check in time was still 9 AM and the surgery was scheduled for 10:30. I was ok with that.
So I was supposed to stop her formula at 2:30 (she is on a feeding pump with continuous feeds 24 hours a day or as much as possible), well I fell asleep last night and didn't set an alarm...I woke up at 3:44. I hurried and jumped out of bed and switched to gatorade. We'll see what the nurse says.
Anyway we are here checking in. I need to check her blood sugar (I will call it BG for Blood Glucose) to make sure she is doing OK. So far she is awake and alert today.
When I got to Primary's I ran up to the 3rd floor (Forever Young Zone) to print off her medications and hospitalizations and diagnosis list that I have. I found an awesome discovery. I have written several suggestions to Primary's that they need a larger (adult size) changing table. They have a hydrolic one at their Riverton Location and it is awesome. And PCMC SLC now has one!!!!! It is on the third floor just south of the forever young zone. I am sooo excited. It is nearly impossible to change her on the tiny counters in the other bathrooms, so then you end up doing it in the doctor's exam rooms and stink up the place. Anyway I'd like to think that my suggestions had a part in the improvement!!!
Yesterday They called and told me that we were supposed to check in at 9 and scheduled for surgery at 11. So they wanted me to stop her formula at Midnight and stop her clear liquids at 8:00 AM. I said "Really?" We are usually the first case because of her hypoglycemia. So we usually check in at about 6 AM or so. The nurse on the phone said she would check for me. I said "It's okay if she's later, but then can we keep her feeds going until 2 or 3?" She said she would check.
She called back and said to stop feeds at 2:30 and stop clears at 8:30. And the check in time was still 9 AM and the surgery was scheduled for 10:30. I was ok with that.
So I was supposed to stop her formula at 2:30 (she is on a feeding pump with continuous feeds 24 hours a day or as much as possible), well I fell asleep last night and didn't set an alarm...I woke up at 3:44. I hurried and jumped out of bed and switched to gatorade. We'll see what the nurse says.
Anyway we are here checking in. I need to check her blood sugar (I will call it BG for Blood Glucose) to make sure she is doing OK. So far she is awake and alert today.
When I got to Primary's I ran up to the 3rd floor (Forever Young Zone) to print off her medications and hospitalizations and diagnosis list that I have. I found an awesome discovery. I have written several suggestions to Primary's that they need a larger (adult size) changing table. They have a hydrolic one at their Riverton Location and it is awesome. And PCMC SLC now has one!!!!! It is on the third floor just south of the forever young zone. I am sooo excited. It is nearly impossible to change her on the tiny counters in the other bathrooms, so then you end up doing it in the doctor's exam rooms and stink up the place. Anyway I'd like to think that my suggestions had a part in the improvement!!!
Sunday, July 10, 2011
The Dr. says to just put shampoo in her eye...
So the Dr. said about the bloody eye boogers...
It was an overgrowth of bacteria around her eyelashes...probably staph. He wasn't worried and didn't think it was a big deal. He said to make a solution of half baby shampoo and half water and use a q-tip to clean her eyelid just under her eyelashes several times per day. He didn't think eyedrops or oral antibiotics would help. I have been doing it for several days and she doesn't like it...obviously! But she hasn't been having any more eye boogers. So we'll do it for a few more days.
He thought her nose sore was looking better than it was. He said that serratia that grew out of the culture wouldn't respond to the bactriban topical ointment that we have been using so to discontinue and see how it does. It is only susceptible to oral cipro. If it doesn't get better on it's own then he will prescribe that.
Her ear looks good. He thought we could discontinue the ear drops.
Her surgery is scheduled for this Wed the 13th. She will be in the hospital from Wed-Sat.
It was an overgrowth of bacteria around her eyelashes...probably staph. He wasn't worried and didn't think it was a big deal. He said to make a solution of half baby shampoo and half water and use a q-tip to clean her eyelid just under her eyelashes several times per day. He didn't think eyedrops or oral antibiotics would help. I have been doing it for several days and she doesn't like it...obviously! But she hasn't been having any more eye boogers. So we'll do it for a few more days.
He thought her nose sore was looking better than it was. He said that serratia that grew out of the culture wouldn't respond to the bactriban topical ointment that we have been using so to discontinue and see how it does. It is only susceptible to oral cipro. If it doesn't get better on it's own then he will prescribe that.
Her ear looks good. He thought we could discontinue the ear drops.
Her surgery is scheduled for this Wed the 13th. She will be in the hospital from Wed-Sat.
Friday, July 8, 2011
Blood Tinged Discharge from Eye
Yesterday afternoon and again this morning she has a gunky light green and blood tinged mucus out of her left eye. It also looks a little red and swollen. The sore on her nose looks better, but is still there. I made her an appt for this afternoon.
Sunday, July 3, 2011
Postponed
So I talked to ENT and neurosurgery about the ear infection and nose infection. ENT was fine doing the surgery, but neurosurgery wanted to wait for it to clear up. They thought 2 weeks would be sufficient. So her surgery is rescheduled for Wed July 13. She will be in the hospital from Wed-Sat.
Monday, June 27, 2011
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