Well let's see it's 2:30 in the morning. We are at Primary Children's E.R. We have been here since 10:30 PM. I'm tired, Ellie is grinding her teeth (she is in pain).
Let me back up...
I said in the last post about her seizures getting better when we did the bowel cleanout. Well they did for a few days, but then they came back. THey are not quite as long as they were before the cleanout, but they are still big and they are still a lot more than she was having a few months ago (we were down to only a few a week). Now we are up to 3-5 per day.
We thought maybe since the bowel cleanout seemed to help we would go down that path. We have since been giving her daily suppositories instead of every other day and yeserday I started her on Culturelle twice a day.
She has a had a cough for about a week now. Nothing bad. Sunday night she was grinding her teeth, which usually means ear infection. I took her to the Dr. on Monday. He didn't see an ear infection, but one ear looked different than the other one. He wrote a prescription for ear drops.
Tues and Wed she was crying at school. She really doesn't cry very often, so you know the pain is bad. SHe was also kicking her legs, which usually mean she needs a diaper change, but she didn't need one at the time.
Wed night she was having a hard time getting a deep breath. It seemed like she was in pain breathing. Her heartrate was in the 160's (high) and her temp was 99 (high for her), her O2 was 94% (which is fine).
Because of the labored breathing we decided to drive her to PCMC. It was snowing horribly. From SOuth Weber to Farmington It was really really bad. I could not hardly see at all. I debated pulling over and calling an ambulance, but decided the ambulance wouldn't be able to find us and then how would we transfer over into the ambulance. So I decided to keep going. I had not been in that bad of a snowstorm while driving since I was on my honeymoon. Everything was white. It was so hard to see where the road was. THe super scary part was it felt like I was just sitting in my car, but not actually moving 35 miles per hour. Typing that now sounds kind of fast. I was following a car because it was easier to follow their taillights than find my own way. I said several prayers. THe snow did not get immediately better, but eventually it did.
When we got off on Beck St. the power was out. So I had visions of arriving at the hospital and them examining her with a flashlight. But once you got into downtown SLC the power was back on.
Once we got into the ER as I was telling the Dr.'s the story I mentioned that the other wierd things for today were...SHe gets a suppository every day and she poops every day. Today she got her suppository but did not poop. However, we started culturelle yesterday which could mess up the schedule. Also school said her pee-pee diapers smelled very strong today. Also tonight she had some white discharge in her diaper area and
her front part of her bum was red.
Well they did chest x-rays and swabbed the discharge. THey tried to cath her for some urine but she was too swollen.
The nurse practicioner asked if I was worried about someone abusing her...I said no.
Anyway, they said the chest x-ray looked the same as it did in July when she came in for chest congestion but went home without being admitted (that was when I was in California). THey came in to swab the vagina for bacterial overgrowth.
I don't know any other test results.
We wait.
WHile we wait, I can tell you about our visit to neurology yesterday. I told him the whole story that you ahve read in the last 2 posts. He asked if anything in her diet had changed I said we had changed brands of calcium, because we couldn't get the old one anymore. He said high or low calcium can definitely cause seizures. Well coincidentally I already had labs called in to get done that same day while I was at PRimary's. THe dietician was going to check calcium, electolytes, metabolic panel, etc... So I called the neurologist to talk with him this morning about the results. THey were fine. Blah. I really wanted them to be off. THat would have been an easy fix. SO we decided to wait uintil this current illness is over. See what happens to the seizures then make a decision. I am leaning toward the ketogenic diet (low carb, high fatty acid). BUt there is a new seizure medication unlike any of the old ones. Or we could turn the Vagel Nerve Stimulator back on. I kind of think the seizures will go back down when she gets feeling better. BUt it might be wishful thinking.
Back to the ER.
Oh I wish she would stop grinding her teeth. It it starting to hurt my teeth.
Ta ta for now.
Thursday, February 17, 2011
Tuesday, February 1, 2011
"Baby it's cold outside"
So we have had no hospitalizations this winter yet. Knock on wood-quick-if you are reading this-knock on wood!!! I'm not kidding---find some wood!
However, we have had about 5 times that her temp has dropped. Once she got to 91 degrees. The other times we have caught it at 93 degrees (taken rectally).
WHen her temp drops her heartrate also slows. (as low as the high 30 BPM). It is very scary. I mean, your heart has to keep beating, 38 BPM or so is very slow!!!!! As her heartrate rises so does her temperature. Or I should probably say as her temperature rises so does her heartrate. IT takes about an hour per degree to warm her up.
This morning her temp dropped, she is back up now. But I really hate this. I worry every time her temp drop that maybe she won't be able to pull it back up. One time last winter when we had in the ER for low body temp she started having a seizure. THey were worried that she was static (or maybe you would say going static or going into static---I don't know). ANyway it basically means that your brain just goes out of control, you keep seizing and you die. AHHH---worries worries worries.
We have started taking her temp every time she sleepy or pale or seizes, etc...anytime anything is out of whack. Usually the sleepy or pale do mean her temp is low. THen we have to strip her down to a diaper (I know sounds couterintuitive) and bundle her up in a an electric blanket on high with another blanket on top. Have a space heater pointing directly at her. Warm up her feeds. And put her in a small room
We have started carrying 3 thermometers (ear, rectal, forehead) with us at all times and an electric blanket.
Today it was so cold and windy outside I couldn't send her to school. I will have to leave in an hour or so to take her to Primary's for an important appointment, but I'm worried about it! Please stop wind! Come out sun! Just for a few hours!!!
In other medical news...she was having blood in her stool. Her stools remained soft. (We give her lactulose to keep her stools soft and a suppository every other day to help her stool). But I called the gastroenterologist. THey said how long has it been since you did a bowel cleanout? I said probably a year to a year and a half. THe nurse said aren't you doing monthly cleanouts? No, no-one every told me to. Anyway, we did a bowel cleanout last weekend and haven't had any blood since. So I guess the thinking is that she was backed up and was having to strain to poop so she was bleeding a little bit.
The really good news is that her siezures were getting horrible. School was calling all of the time and they were worried and I was worried. It was really bad. I had even finangled my way into a neurology appointment (before the standard 3 month waiting period). I really thought we were going to have to do the ketogenic diet or start her on some seizure meds (she is on no seizure meds right now) or turn her Vagel Nerve Stimulator back on. I don't know...but something had to be done. THey were huge and they were long. After the bowel cleanout---her seizures have all but disappeared. Yea for poop!!!!! The moral of the story is I guess she needs a monthly bowel cleanout---but it would be really nice if the doctors would tell you these things in advance. I'm glad we figured it out because we don't have another dysphasia (gastroenterology) appt until April.
Sorry to kind of ramble on and jump around to different subjects. But hey, oh well!
Back to the knock on wood subject. SHe has hardly even had a cough, cold, flu, stomach bug or anything. THe rest of us have been sick 2 or 3 times each this winter and ELlie has had nothing. I seriously can't believe it. Quick...find some more wood!!!!!
However, we have had about 5 times that her temp has dropped. Once she got to 91 degrees. The other times we have caught it at 93 degrees (taken rectally).
WHen her temp drops her heartrate also slows. (as low as the high 30 BPM). It is very scary. I mean, your heart has to keep beating, 38 BPM or so is very slow!!!!! As her heartrate rises so does her temperature. Or I should probably say as her temperature rises so does her heartrate. IT takes about an hour per degree to warm her up.
This morning her temp dropped, she is back up now. But I really hate this. I worry every time her temp drop that maybe she won't be able to pull it back up. One time last winter when we had in the ER for low body temp she started having a seizure. THey were worried that she was static (or maybe you would say going static or going into static---I don't know). ANyway it basically means that your brain just goes out of control, you keep seizing and you die. AHHH---worries worries worries.
We have started taking her temp every time she sleepy or pale or seizes, etc...anytime anything is out of whack. Usually the sleepy or pale do mean her temp is low. THen we have to strip her down to a diaper (I know sounds couterintuitive) and bundle her up in a an electric blanket on high with another blanket on top. Have a space heater pointing directly at her. Warm up her feeds. And put her in a small room
We have started carrying 3 thermometers (ear, rectal, forehead) with us at all times and an electric blanket.
Today it was so cold and windy outside I couldn't send her to school. I will have to leave in an hour or so to take her to Primary's for an important appointment, but I'm worried about it! Please stop wind! Come out sun! Just for a few hours!!!
In other medical news...she was having blood in her stool. Her stools remained soft. (We give her lactulose to keep her stools soft and a suppository every other day to help her stool). But I called the gastroenterologist. THey said how long has it been since you did a bowel cleanout? I said probably a year to a year and a half. THe nurse said aren't you doing monthly cleanouts? No, no-one every told me to. Anyway, we did a bowel cleanout last weekend and haven't had any blood since. So I guess the thinking is that she was backed up and was having to strain to poop so she was bleeding a little bit.
The really good news is that her siezures were getting horrible. School was calling all of the time and they were worried and I was worried. It was really bad. I had even finangled my way into a neurology appointment (before the standard 3 month waiting period). I really thought we were going to have to do the ketogenic diet or start her on some seizure meds (she is on no seizure meds right now) or turn her Vagel Nerve Stimulator back on. I don't know...but something had to be done. THey were huge and they were long. After the bowel cleanout---her seizures have all but disappeared. Yea for poop!!!!! The moral of the story is I guess she needs a monthly bowel cleanout---but it would be really nice if the doctors would tell you these things in advance. I'm glad we figured it out because we don't have another dysphasia (gastroenterology) appt until April.
Sorry to kind of ramble on and jump around to different subjects. But hey, oh well!
Back to the knock on wood subject. SHe has hardly even had a cough, cold, flu, stomach bug or anything. THe rest of us have been sick 2 or 3 times each this winter and ELlie has had nothing. I seriously can't believe it. Quick...find some more wood!!!!!
Thursday, December 16, 2010
Slight Pnemonia
3 weeks ago ELlie had an ear infection in her Right ear. SHe did 10 days of oral antibiotics and ear drops. SHe was not in pain after the 10 days, but still had a junky cough. THe doctor prescribed another 10 days of oral antibiotics. After a total of 20 days on antibiotics she still had a junky cough.
A few days off the antibiotics and the cough got junkier. IT still sounded like it was all upper airway (not down ito her lungs).
Then one day she came home from school and she was in pain. Also, she was breathing strangely. SHe could breath in OK but then paused and grunted when she was exhaling.
I thought maybe she needed to go #2. So I gave her an enema. THere was a small amount of soft stool, but not enough that that would have been the problem.
Her sats (oxygen) were still good. Her heartrate was elevated and she did have a temp of 98 degrees F. (Her normal is 95.5).
I took her to the Dr. the next afternoon. He thought there was some congestion in her chest right where the wind pipe and the food pipe break off into the lungs. So he wanted to do a chest X-ray and a CBC.
THe x-ray didn't really show anything, but it's really hard to get a good one of her anyway. THe white blood cells were up and something else was up too (can't remember what).
He thought that it looked like a slight bacterial pnemonia. He prescribed 2 antibiotics. One of them was a really strong one. THe other is just a normal one.
So yesterday (the first day on antibiotics) she slept from 9:30 to 2:30. She was so sleepy and out of it that her sats were dropping, so I had to put her bi-pap mask on with O2 hooked up. I was really getting worried. Usually when she is this sick we are in the hospital. WHat if she took a turn for the worse etc... I really thought we were going to be down at Primary's within a day or 2.
However at 2:30 she woke up and was happy and wide awake. Her sats were fine her heartrate was only slightly elevated. She did great all afternoon, last night and today. No ISSUES AT ALL.
Truly a CHristmas miracle.
A few days off the antibiotics and the cough got junkier. IT still sounded like it was all upper airway (not down ito her lungs).
Then one day she came home from school and she was in pain. Also, she was breathing strangely. SHe could breath in OK but then paused and grunted when she was exhaling.
I thought maybe she needed to go #2. So I gave her an enema. THere was a small amount of soft stool, but not enough that that would have been the problem.
Her sats (oxygen) were still good. Her heartrate was elevated and she did have a temp of 98 degrees F. (Her normal is 95.5).
I took her to the Dr. the next afternoon. He thought there was some congestion in her chest right where the wind pipe and the food pipe break off into the lungs. So he wanted to do a chest X-ray and a CBC.
THe x-ray didn't really show anything, but it's really hard to get a good one of her anyway. THe white blood cells were up and something else was up too (can't remember what).
He thought that it looked like a slight bacterial pnemonia. He prescribed 2 antibiotics. One of them was a really strong one. THe other is just a normal one.
So yesterday (the first day on antibiotics) she slept from 9:30 to 2:30. She was so sleepy and out of it that her sats were dropping, so I had to put her bi-pap mask on with O2 hooked up. I was really getting worried. Usually when she is this sick we are in the hospital. WHat if she took a turn for the worse etc... I really thought we were going to be down at Primary's within a day or 2.
However at 2:30 she woke up and was happy and wide awake. Her sats were fine her heartrate was only slightly elevated. She did great all afternoon, last night and today. No ISSUES AT ALL.
Truly a CHristmas miracle.
Thursday, September 23, 2010
Thursday
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.
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.
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!!!
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