The rest of yesterday (Wed) she did OK as long as we gave her pain meds regularly.
This morning she is in a little pain, but doing okay with the meds. She was sleepy this morning, but that's because we forgot to put her bi-pap mask on last night.
Now she is awake.
Her oxygen saturation is in the high 90's. Before today it has been hanging out in the low 90's. And her heartrate is in the low 100's (so it is a little elevated due to pain).
I need to look up and see if there is cover for casts on legs so she can have a bath. When (A) broke his arm I wrapped it in press and seal and that worked pretty well. But I've heard there are covers you can buy.
Thursday, September 23, 2010
Wednesday, September 22, 2010
Pain
Well, yesterday I was in shock at how well she was doing. Her heartrate stayed low (= low pain). SHe was not crying or grimacing. She was awake and even smiled some.
Last night however, the story changed. Around 6 PM she started grimacing, groaning, crying. We have been giving her pain meds non-stop since then, but they don't last the full 3 hours before she wants more. They last about 2.5 hours. She is getting Lortab and ibuprofen.
Her ears are draining. Her Left ear has a bloody discharge (not stright blood though) and her Right ear is draining TONS of yellow fluid. I can change her cotton 5 or more times a day and it is soaked through. I called ENT this morning about it. THey said that she probably has an ear infection draining. To just keep doing the ear drops.
Right now she is comfortable and listening to Mickey Mouse/Disney songs on CD.
It is definitely her leg or legs that are causing the pain, not the ears.
She has to go back in on Monday to get her casts changed out. THey will do it at Shriners and they will do it under anesthesia. They will also cast her feet for new DAFO's (foot braces).
Last night however, the story changed. Around 6 PM she started grimacing, groaning, crying. We have been giving her pain meds non-stop since then, but they don't last the full 3 hours before she wants more. They last about 2.5 hours. She is getting Lortab and ibuprofen.
Her ears are draining. Her Left ear has a bloody discharge (not stright blood though) and her Right ear is draining TONS of yellow fluid. I can change her cotton 5 or more times a day and it is soaked through. I called ENT this morning about it. THey said that she probably has an ear infection draining. To just keep doing the ear drops.
Right now she is comfortable and listening to Mickey Mouse/Disney songs on CD.
It is definitely her leg or legs that are causing the pain, not the ears.
She has to go back in on Monday to get her casts changed out. THey will do it at Shriners and they will do it under anesthesia. They will also cast her feet for new DAFO's (foot braces).
Tuesday, September 21, 2010
ears
Her L ear was bloody (just a little) this morning and her r ear has been draining yellow fluid (lots) today.
-Mikael
-Mikael
No news is good news
Sorry I dropped the ball on all of Ellie's fans out there.
She is home.
She started waking up for a few minutes at a time yesterday about 3:30. I told the Nurse and Dr. that I had to leave at 5 to go to my night class. So if she didn't wake up I could come back at 10:30 PM or she would have to spend the night and I could come in the morning. It was true. But it also kicks them in the pants to get us out the door.
So they got all of the paperwork ready and I worked on waking ELlie up. Around 4 she really started waking up. She was fully awake by 5. She was really not in any pain. (Her heartrate was not high). SHe hadn't had pain meds since 11 AM. So that was surprising to me.
SHe still needed O2 at 4:30 (1/2 liter). But we had her on room air by 5 PM. I really didn't feel like that was a long enough trial on room air. Plus I didn't have my pulse oximeter with me (I wasn't expecting her to come home until the next day).
So I asked for an oxygen tank and I just had her wear it cranked up on the way hoe just to be safe.
Anyway it was 3 minutes to 5. (Remember I had to leave at 5 to make it to my class). The ICU dr was trying to track down ENT because he had verbally told me I could go home if she was doing well, but he hadn't written it in his orders. So, at 3 minutes to 5 the ENT resident came by to check on her. THe ICU Dr. asked him to sign off on it. But he said he couldn't, that it would have to be Dr. Park. We had been trying to get in touch with Dr. park for an hour and a half with no success. We asked the resident to page him or go ask him in the ER. THe resident was not very happy about it. But he did it and we got the go ahead at 5:15. So we loaded up and left.
(so now you see why I didn't post that we were leaving...we were frantic , then we were rushed, then I went to school).
Ellie was awake and happy and not in pain for the rest of the night.
Today she has been awake and doing well. Still not a lot of pain, but I am giving her regularly scheduled pain meds anyway so it doesn't get bad and to keep the swelling down.
Her L eye is puffy today. SHe sleeps with her head to the left and the IV fluids must have puddled there.
She is home.
She started waking up for a few minutes at a time yesterday about 3:30. I told the Nurse and Dr. that I had to leave at 5 to go to my night class. So if she didn't wake up I could come back at 10:30 PM or she would have to spend the night and I could come in the morning. It was true. But it also kicks them in the pants to get us out the door.
So they got all of the paperwork ready and I worked on waking ELlie up. Around 4 she really started waking up. She was fully awake by 5. She was really not in any pain. (Her heartrate was not high). SHe hadn't had pain meds since 11 AM. So that was surprising to me.
SHe still needed O2 at 4:30 (1/2 liter). But we had her on room air by 5 PM. I really didn't feel like that was a long enough trial on room air. Plus I didn't have my pulse oximeter with me (I wasn't expecting her to come home until the next day).
So I asked for an oxygen tank and I just had her wear it cranked up on the way hoe just to be safe.
Anyway it was 3 minutes to 5. (Remember I had to leave at 5 to make it to my class). The ICU dr was trying to track down ENT because he had verbally told me I could go home if she was doing well, but he hadn't written it in his orders. So, at 3 minutes to 5 the ENT resident came by to check on her. THe ICU Dr. asked him to sign off on it. But he said he couldn't, that it would have to be Dr. Park. We had been trying to get in touch with Dr. park for an hour and a half with no success. We asked the resident to page him or go ask him in the ER. THe resident was not very happy about it. But he did it and we got the go ahead at 5:15. So we loaded up and left.
(so now you see why I didn't post that we were leaving...we were frantic , then we were rushed, then I went to school).
Ellie was awake and happy and not in pain for the rest of the night.
Today she has been awake and doing well. Still not a lot of pain, but I am giving her regularly scheduled pain meds anyway so it doesn't get bad and to keep the swelling down.
Her L eye is puffy today. SHe sleeps with her head to the left and the IV fluids must have puddled there.
Monday, September 20, 2010
Still sleepy
She is still sleeping. She is snoring a little. She has the bi-pap off. But is using a nasal canula on 1 liter of oxygen. With the O2 she is satting about 97%. She needs ti wake up if she wants to go home.
" 'Cuz wakin' up is hard to do"
I am trying to wake up. But it is hard and I am in pain so maybe I don't really want to anyway!!!
Head to toe
Well she's done. SHe is resting peacefully in ICU (is that an oxymoron?). Everything went fine.
THe Orthopedic Surgeon said he made on small incision behine her ankle and released (cut and extended) 2 tendons there and another incision on the top of her foot. It didn't sound like either incision was more then an inch or two. He said it is laying nicely now. her heel is still a little turned in. But it would require a lot of surgery and where she doesn't walk, it wouldn't be worth it. We should be able to get braces on her and get her back in her stander with the releases that he did.
They had to put her bi-pap mask on while she is coming out of sedation. She was only breathing 7 breaths/minute (which actually isn't that much lower then her normal). BUt why not giver her a break. SHe is really sleepy still.
Her L ear is bloody.
Her casts on both of her feet are bright pink. Which is AWESOME!!! They will match her wheelchair (which is pink zebra).
SHe is cold---surprise surprise. 34.5 C.
Her heartrate was up in the 90's (high for her). So they gave her some morphine.
Both Dr.'s said if she wakes up and is doing fine she can go home today. THat would truly be a first. I don't think she has ever come home bore the estimated time (they had told me tomorrow). Usually if it varies from the proposed it is longer by a day or two or more.
Oh--I just saw some peepers and she has started smacking her lips. SHe is waking up a little.
THe Orthopedic Surgeon said he made on small incision behine her ankle and released (cut and extended) 2 tendons there and another incision on the top of her foot. It didn't sound like either incision was more then an inch or two. He said it is laying nicely now. her heel is still a little turned in. But it would require a lot of surgery and where she doesn't walk, it wouldn't be worth it. We should be able to get braces on her and get her back in her stander with the releases that he did.
They had to put her bi-pap mask on while she is coming out of sedation. She was only breathing 7 breaths/minute (which actually isn't that much lower then her normal). BUt why not giver her a break. SHe is really sleepy still.
Her L ear is bloody.
Her casts on both of her feet are bright pink. Which is AWESOME!!! They will match her wheelchair (which is pink zebra).
SHe is cold---surprise surprise. 34.5 C.
Her heartrate was up in the 90's (high for her). So they gave her some morphine.
Both Dr.'s said if she wakes up and is doing fine she can go home today. THat would truly be a first. I don't think she has ever come home bore the estimated time (they had told me tomorrow). Usually if it varies from the proposed it is longer by a day or two or more.
Oh--I just saw some peepers and she has started smacking her lips. SHe is waking up a little.
FIrst SUrgery done
ENT is done. He said her sinus were clear and open. He said maybe the amoxicillan was doing it's job. THere really wasn't even anything to culture. Hmmmmmmm...
The left ear was bulging. Tubes were put in both ears.
He wants to see us in about a month to check her ears.
On to the feet.....
The left ear was bulging. Tubes were put in both ears.
He wants to see us in about a month to check her ears.
On to the feet.....
She's in
THe surgery is still on. She has been taken back to the OR. THe anestesiologist said that even if we postponed it 6 weeks, she could still be in the same situation then (with a sinus infection). WHich is really a valid point. He said that she might still be intubated after (in the ICU). WHich I wasn't counting on. ALthough I really hate seeing her intubated (it reminds me af really scary---dark times). But we can do it for a day or so.
Dr. Park (ENT) is first. He is doing her tubes in her ears and sinus cleanout. He thought his portion would take about an hour. THey took her back about 7:30 or 7:45. BUt of course it takes time to prep her and hook her up to monitors and get her to sleep.
THen Dr. Santora is doing her feet. Only surgery on the Left one. But there will be casts on both. He thought he would take an hour and a half. After the surgery he is going to mold her feet for new braces. THen but the casts on. SHe will need her cast on the left foot for about 6 weeks. THey will probably change it out at about 1 or 2 weeks for swelling. I don't know how long the cast will be on her right foot. WIth her other serial casting what they say is that if you gain 5 degrees in a week then they will keep going. But as soon as you stop gaining range of motion then they stop the casting process. I don't know if they will follow that same protocol or not.
I feel calm and good that they went ahead with the surgery. It will all turn out fine and will hopefuilly help her a lot.
Dr. Park (ENT) is first. He is doing her tubes in her ears and sinus cleanout. He thought his portion would take about an hour. THey took her back about 7:30 or 7:45. BUt of course it takes time to prep her and hook her up to monitors and get her to sleep.
THen Dr. Santora is doing her feet. Only surgery on the Left one. But there will be casts on both. He thought he would take an hour and a half. After the surgery he is going to mold her feet for new braces. THen but the casts on. SHe will need her cast on the left foot for about 6 weeks. THey will probably change it out at about 1 or 2 weeks for swelling. I don't know how long the cast will be on her right foot. WIth her other serial casting what they say is that if you gain 5 degrees in a week then they will keep going. But as soon as you stop gaining range of motion then they stop the casting process. I don't know if they will follow that same protocol or not.
I feel calm and good that they went ahead with the surgery. It will all turn out fine and will hopefuilly help her a lot.
Photos
They are going to lengthen the tendon on her Left foot (the right foot in the picture). You can see how much it turns in. They are also going to put a cast on the other foot to stretch it out---but no surgery
Sats
Well we have met with the nurse practicioner. She said her lungs sound clear. The only hang-up is her oxygen saturation. Laying down she was hanging out at 91-93. Sitting up she is at 93-94%. THey are sending in the anesthesiologist. Normally (when healthy) she sits at about 96-97%. SO yes, it is down a little. My gut says they will still go ahead with it. SHe still doesn't have a fever. ANd the secretions aren't green.
The waiting game
We have checked in and are waiting to be called back.
We gave her a blessing last night. I feel like her cough (junkiness/drainage) is better than it has been this whole week. But it is still there.
I don't want to risk the surgery if it won't be safe. But on the other hand we have waited 6 months for this surgery. Normally you might only have to wait 3 months. But there was a mix-up and they didn't schedule anything for 3 months, so then we had to wait another 3 months to get in.
We gave her a blessing last night. I feel like her cough (junkiness/drainage) is better than it has been this whole week. But it is still there.
I don't want to risk the surgery if it won't be safe. But on the other hand we have waited 6 months for this surgery. Normally you might only have to wait 3 months. But there was a mix-up and they didn't schedule anything for 3 months, so then we had to wait another 3 months to get in.
Sunday, September 19, 2010
Foot surgery, but wait...there's more
Tomorrow (Monday) Ellie goes in to Primary's for foot surgery. Her foot twists in so much that we can't fit braces on it any more. So they are going to go in and lengthen the tendons. She needs to have her foot straight in order to wear the braces. She needs to wear the braces so that she can to weight bearing in her stander. She needs to be able to stand so that her hips develop right. If her hip sockets don't form correctly then her hips will come out and then she will need hip surgery (which is a really big surgery). Her hips are already coming out, so really this will just prolong the inevitable. THey will for sure do her Left foot and might do both. Afterwards she will need a series of casts to help it heal correctly (serial casting).
While she is out they will also be cleaning out her sinus' and putting tubes in her ears. She gets sinus infections about avery 6 weeks. And gets ear infections probably every other or every third month. SO she is on antibiotics ALOT. WHich is bad because then you become immune to antibiotics and then you are more likely to get a "super bug".
Needless to say she is slated to go to ICU after surgery and should supposedly come home on Tuesday. I'm not keeping my fingers crossed. I would be happy if she makes it home Wed or THurs.
The only kicker is that she currently has a sinus infection clearing out. So she has a junky cough. It is not in her lungs, it is all upper respiratory. I talked to outpatient surgery and ENT on Friday about it. THey said if she doesn't get a fever and the secretions stay clear or white (vs green or brown) then she will probably be OK to go ahead with the surgery. SHe has been on antibiotics for 7 days which they said was good. We'll see. Maybe they'll see her in the morning and decide to postpone.
THe one other thing going against her is that she got her botox/phenol injections on Thurs for her tight arms/hands/shoulders. So she is in pain for that. SO we have been giving her acetaminophen. Which I suppose could be masking a fever. I gave her meds at 8:30 AM this morning and didn't give her more until 9 PM tonight and she didn't have a fever. But she was crying (I'm assuming from pain).
I am more nervous for this surgery than I am usually #1 since she is sick #2 becuase this is the 1st surgery since we almost lost her last winter. It really made me realize how fragile she is and how precious life is.
We check in at 6 AM and surgery is scheduled for 7:30 AM. I'm not sure how long the surgery will last, I will find out in the morning.
Ellie, me and our family would love prayers of comfort and peace.
While she is out they will also be cleaning out her sinus' and putting tubes in her ears. She gets sinus infections about avery 6 weeks. And gets ear infections probably every other or every third month. SO she is on antibiotics ALOT. WHich is bad because then you become immune to antibiotics and then you are more likely to get a "super bug".
Needless to say she is slated to go to ICU after surgery and should supposedly come home on Tuesday. I'm not keeping my fingers crossed. I would be happy if she makes it home Wed or THurs.
The only kicker is that she currently has a sinus infection clearing out. So she has a junky cough. It is not in her lungs, it is all upper respiratory. I talked to outpatient surgery and ENT on Friday about it. THey said if she doesn't get a fever and the secretions stay clear or white (vs green or brown) then she will probably be OK to go ahead with the surgery. SHe has been on antibiotics for 7 days which they said was good. We'll see. Maybe they'll see her in the morning and decide to postpone.
THe one other thing going against her is that she got her botox/phenol injections on Thurs for her tight arms/hands/shoulders. So she is in pain for that. SO we have been giving her acetaminophen. Which I suppose could be masking a fever. I gave her meds at 8:30 AM this morning and didn't give her more until 9 PM tonight and she didn't have a fever. But she was crying (I'm assuming from pain).
I am more nervous for this surgery than I am usually #1 since she is sick #2 becuase this is the 1st surgery since we almost lost her last winter. It really made me realize how fragile she is and how precious life is.
We check in at 6 AM and surgery is scheduled for 7:30 AM. I'm not sure how long the surgery will last, I will find out in the morning.
Ellie, me and our family would love prayers of comfort and peace.
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