Lame post title, I know!
Ellie still has an occasional junky cough. But she is maintaining her oxygen in the mid 90's.
Her bum is completely better.
Last Fri morning I called and made an appt with her Dr (for her continuing cough). Well a few minutes later my respite worker called me in because her right ear was full of blood. This has happened before. I assumed it was a ruptured eardrum. I already had a Dr. appt so I just added it onto my mental list of things to talk to the Dr. about.
He thought the blood was either from trauma (like something being shoved in her ear (which is not likely), or possibly from her ear tube coming out. He couldn't tell because there was too much blood. He wanted us to do ear drops (which we just did a few weeks ago). He also wrote a prescription for an anitibiotic. But wanted us to hold off on the antibiotic. If she started getting worse or if the cough kept going on, then fill the prescription.
We haven't filled it yet. She might be miniscually better. But definitely not worse.
I can tell she is still sick because she has been normal body temperature. SHe feels warm to the touch, not ice cold like normal, plus the cough, plus her heartrate had been higher in the morning and at night.
Last nigt er heartrate seemed more normal. So maybe she is kicking this thing.
Monday, February 28, 2011
Monday, February 21, 2011
OK but sleepy
She is doing OK today. She is sleepy. BUt has been smiling. She still has a junky cough-occassionally. Her heart rate was lowish (but not terribly low) during the night-65. Then this morning when she woke up her heart rate shot up into the 140's (high). I gave her IBUprofen and it is back down into the 90's. Her oxygen is hanging out around 93% (Okay).
So overall OK but sleepy.
So overall OK but sleepy.
Sunday, February 20, 2011
Getting better
Last night I used her full face mask (covers mouth and nose) in stead of her regular bi-pap mask (covers nose). Her sats stayed at 93% all night.(which is good).
She had a fever of 99 this morning, but it has come down. Maybe I had her bundled too warm?
I LOVE ANTIBIOTICS!
I was going to keep her home from church today just so she didn't catch anything else. But then the Stake Pres. cancelled church due to the snow.
I just called Primary's about her final test results. No growth on anything. NEgative for everything. No strep, no yeast, and finally NO STD's!!!! WHat does this mean? I'm assuming the redness and discharge were from either culturelle or the tiny bite of shake I gave her.
I will need to contact her regular Dr. and her gastroenterologist and her allergist on Monday to figure out a plan.
Has anyone seen an allergist at PCMC. We have one in Layton that I like pretty well, but maybe it's time to switch. Who do you like or dislike?
Her cold seems to be getting better. Still a few junky coughs now and then, but nothing drastic.
She had a fever of 99 this morning, but it has come down. Maybe I had her bundled too warm?
I LOVE ANTIBIOTICS!
I was going to keep her home from church today just so she didn't catch anything else. But then the Stake Pres. cancelled church due to the snow.
I just called Primary's about her final test results. No growth on anything. NEgative for everything. No strep, no yeast, and finally NO STD's!!!! WHat does this mean? I'm assuming the redness and discharge were from either culturelle or the tiny bite of shake I gave her.
I will need to contact her regular Dr. and her gastroenterologist and her allergist on Monday to figure out a plan.
Has anyone seen an allergist at PCMC. We have one in Layton that I like pretty well, but maybe it's time to switch. Who do you like or dislike?
Her cold seems to be getting better. Still a few junky coughs now and then, but nothing drastic.
Saturday, February 19, 2011
Better Sats
So this morning her sats weren't looking so hot. But for no apparent reason they came up. THey have been around 95% all day. Her lips are still dry and bleeding. I think from breathing through her mouth instead of her nose (because her nose is stuffed up). I think she is doing better on her pee-pee diapers. She has been awake all day today. Her bum looks 75% better.
I called to get the test results this morning. Yeast infection was negative. One of the STD's was negative. The preliminary results for Strep (in vagina) and gonorrhea were negative but they are waiting until 72 hours (SUnday Morning) to call the final results. THe thing they did see was major food allergies. THey want her to follow up with more allergy testing.
THe weird thing about food allergies is she is on a very hypo-allergenic formula already. She only gets the formula...basically. The other day a fed her one tiny tiniest bite of raspberry marshmallow shake from Jake's. (We were celebrating another year done for her IEP-Individualized Education Plan-Her goals for school).
We have done allergy testing before and know that she has a lot of allergies. But the blood work they did at the ER showed a few new ones.
She has been doing super duper well today!!!
I called to get the test results this morning. Yeast infection was negative. One of the STD's was negative. The preliminary results for Strep (in vagina) and gonorrhea were negative but they are waiting until 72 hours (SUnday Morning) to call the final results. THe thing they did see was major food allergies. THey want her to follow up with more allergy testing.
THe weird thing about food allergies is she is on a very hypo-allergenic formula already. She only gets the formula...basically. The other day a fed her one tiny tiniest bite of raspberry marshmallow shake from Jake's. (We were celebrating another year done for her IEP-Individualized Education Plan-Her goals for school).
We have done allergy testing before and know that she has a lot of allergies. But the blood work they did at the ER showed a few new ones.
She has been doing super duper well today!!!
O2
So even with her bi-pap and 2 liters of o2 last night her sats hovered at 90%. Not good.
THis morning off bi-pap and o2 they were 87%. I suctioned and did CPT (firmly pound all over her torso to loosen things up). THey came up to 94% with no o2 for about 10 minutes. Now we are back down to 90%.
I think I'll have to have them switch out my pediatric o2 concentrator for an adult. The pediatric only goes up to 2 liters. I do have an M-tank (big tank of o2) on hand that can go higher, but would rather use a concentrator since it's an endless supply. THe concentrator pulls air in and breaks apart the molecules and spits out pure o2. THe tank is compressed o2. WHen the tank is empty the o2 is gone. I hate to make them come out on a saturday to switch it, but oh well.
Her breathing sounds congested. It's hard to know when to take her in. ANd where to take her in. If we have time (meaning not a total emergency) it's better to make the trip to Primary CHildren's ER. Otherwise if you go to the Dr or the local ER then they send you to PCMC it takes a lot longer. Primary's is very particular. Even if another ER ran a test or an x-ray, Primary's ER will redo it. I'm not kidding. If you got an IV at another hospital, Primary's will put in their own. It is kind of annoying, yet comforting at the same time. It is annoying because you have to do everything twice. Yet comforting because they are so thorough and have such confidence in their own. But what does it say about their confidence in other institutions?
BUt like this time, we were just there on Wed night. THey did a chest x-ray and it was cloudy but not a focal pnemonia. But her sats were good then too. THey don't really take you seriously until your sats are down. Well her sats are down now. BUt they are ok (not great) on o2. THey really can't do anything for her there that I can't do for her here except the following: monitor her at night more closely, write prescriptions, be on hand in case things take a turn for the worse, do tests like x-rays.
SHe has been awake and smiling today. Her heartrate is a little high, 110.
Time do draw her meds and put her on the wiggly jiggly (vibrating vest).
THis morning off bi-pap and o2 they were 87%. I suctioned and did CPT (firmly pound all over her torso to loosen things up). THey came up to 94% with no o2 for about 10 minutes. Now we are back down to 90%.
I think I'll have to have them switch out my pediatric o2 concentrator for an adult. The pediatric only goes up to 2 liters. I do have an M-tank (big tank of o2) on hand that can go higher, but would rather use a concentrator since it's an endless supply. THe concentrator pulls air in and breaks apart the molecules and spits out pure o2. THe tank is compressed o2. WHen the tank is empty the o2 is gone. I hate to make them come out on a saturday to switch it, but oh well.
Her breathing sounds congested. It's hard to know when to take her in. ANd where to take her in. If we have time (meaning not a total emergency) it's better to make the trip to Primary CHildren's ER. Otherwise if you go to the Dr or the local ER then they send you to PCMC it takes a lot longer. Primary's is very particular. Even if another ER ran a test or an x-ray, Primary's ER will redo it. I'm not kidding. If you got an IV at another hospital, Primary's will put in their own. It is kind of annoying, yet comforting at the same time. It is annoying because you have to do everything twice. Yet comforting because they are so thorough and have such confidence in their own. But what does it say about their confidence in other institutions?
BUt like this time, we were just there on Wed night. THey did a chest x-ray and it was cloudy but not a focal pnemonia. But her sats were good then too. THey don't really take you seriously until your sats are down. Well her sats are down now. BUt they are ok (not great) on o2. THey really can't do anything for her there that I can't do for her here except the following: monitor her at night more closely, write prescriptions, be on hand in case things take a turn for the worse, do tests like x-rays.
SHe has been awake and smiling today. Her heartrate is a little high, 110.
Time do draw her meds and put her on the wiggly jiggly (vibrating vest).
Friday, February 18, 2011
Better or worse?
Ellie's bum is looking less red and swollen. It is still both, but just less.
I tried just putting a warm blanket on her. BUt after 45 min on high her heartrate was barely hitting the 60's and temp had not risen at all.
So I undressed her put the electric blanket under and over her and another blanket on top. I turned the electric blanket on high for 30 min and that seemed to warm her up.n I turned it off but just left her bundled in it. This girl is going to get cancer from overusing the electric blanket. But what choice do we have? I tried calling insurance about getting a bear hugger like the ER has. It is a paper blanket with holes in the bottom. It blows warm air out of the holes. Think of the paper blanket as an upside down air hockey table. It works so great. It warms her up from 91 degrees in an hour or two when it takes the electric blanket an hour per degree. Insurance didn't know what it was.
She slept from about 1:30 when she got home until 6 PM. THe o2 has been on her the whole time also. I was really tired today too from out late night escapades the other night. SO I think it just caught up to both of us. I took a nap from about Noon until 4 and basically got nothing accomplished all day.
SHe is awake now.
SHe has been pooping today, so I think that hurdle is cleared.
She has had more urination today than yesterday, but I don't think she has caught up yet.
So the bum looks better (a little) and the breathing/sats are worse. No emergency yet.
I tried just putting a warm blanket on her. BUt after 45 min on high her heartrate was barely hitting the 60's and temp had not risen at all.
So I undressed her put the electric blanket under and over her and another blanket on top. I turned the electric blanket on high for 30 min and that seemed to warm her up.n I turned it off but just left her bundled in it. This girl is going to get cancer from overusing the electric blanket. But what choice do we have? I tried calling insurance about getting a bear hugger like the ER has. It is a paper blanket with holes in the bottom. It blows warm air out of the holes. Think of the paper blanket as an upside down air hockey table. It works so great. It warms her up from 91 degrees in an hour or two when it takes the electric blanket an hour per degree. Insurance didn't know what it was.
She slept from about 1:30 when she got home until 6 PM. THe o2 has been on her the whole time also. I was really tired today too from out late night escapades the other night. SO I think it just caught up to both of us. I took a nap from about Noon until 4 and basically got nothing accomplished all day.
SHe is awake now.
SHe has been pooping today, so I think that hurdle is cleared.
She has had more urination today than yesterday, but I don't think she has caught up yet.
So the bum looks better (a little) and the breathing/sats are worse. No emergency yet.
Thursday, February 17, 2011
We Need lasix
Ellie does not urinate while she is sleeping. So in the morning her first 2-3 diapers (until 10 or 11 AM) are really wet because she has gotten feeds throughout the night.
She didn't have any big wet diapers this morning. She has only had maybe 3-4 very small wet diapers today. Each one with a small blood tinged area. I think we better get up and check on her during the night. #1 so she is not sitting in stuff on her sore bum and #2 so we don't have a huge puddle in the morning. Which in turn could make her drop her temp.
I think she is holding it because it hurts.
Her bum is looking slightly less red and swollen tonight. I'm hoping that means the antibiotic is working. Do antibiotics work on STD's? Who knows, who cares...I'm assuming it's not an STD.
I bought some vagisil wipes and have used those on her several times today in case it was a yeast infection. Can you imagine having a yeast infection and not being able to itch or tell anyone you itch?!?!?!?!
If you didn't get the blog heading...Lasix is a med that makes you urinate.
If you didn't get the blog heading...Lasix is a med that makes you urinate.
Culturelle=Culprit???
Another special needs Mom emailed me and said that when she starts her daughter on culturelle she gets white discharge and a red bum. That made me feel so much better.
Ellie has had a red bum (front parts) and discharge before, and she has been on culturelle before. I have no way of knowing if the two correlated.
Why do there have to be bad people in the world that the Dr.'s would even think they have to run tests for an STD. Who would do that to someone like Ellie? I'm not saying something has happened. I don't think anything has. I just hate that it would even cross the Dr.'s minds. Of course I couldn't say "I don't want you to run that test" because well, you know. Anyway it sickens me. It has made go to a bad place of questioning every person I know who could possibly have been alone with Ellie and wondering could they have done something to her? The answer is no!!!!! No one I know would do that!!! But I hate that I had to think of each of you in that type of light.
The same Mom said that when she is on Calcium with magnesium or zinc her seizures go up. But if she is on straight calcium the seizures are fine. So once Ellie gets over this current illness. If her seizures don't go down I am going to try switching calcium supplements.
Anyway, thank you to that "Special" Mom (you know who you are) I appreciated your insight. It made my day much much much more bearable.
In other news...her sats have been a little lower today. low 90's to high 80's. She has had a few naps today. We didn't get home until 4:30 AM and she hadn't been asleep at all. I had to put O2 on her a few times today. Nothing drastic.
Mostly awake today. No crying. Still very swollen in diaper area. She has only had 3 very small wet diapers and 1 poop today. I think it hurts so she's holding it in. I'm fairly sure we are going to have a big mess in the next 24 hours. THere have been a few blood tinged spots in her diaper (from the swollen area). Her lips are very dry to the point of bleeding. SHe is getting her normal amount of liquids/feeds.
Ellie has had a red bum (front parts) and discharge before, and she has been on culturelle before. I have no way of knowing if the two correlated.
Why do there have to be bad people in the world that the Dr.'s would even think they have to run tests for an STD. Who would do that to someone like Ellie? I'm not saying something has happened. I don't think anything has. I just hate that it would even cross the Dr.'s minds. Of course I couldn't say "I don't want you to run that test" because well, you know. Anyway it sickens me. It has made go to a bad place of questioning every person I know who could possibly have been alone with Ellie and wondering could they have done something to her? The answer is no!!!!! No one I know would do that!!! But I hate that I had to think of each of you in that type of light.
The same Mom said that when she is on Calcium with magnesium or zinc her seizures go up. But if she is on straight calcium the seizures are fine. So once Ellie gets over this current illness. If her seizures don't go down I am going to try switching calcium supplements.
Anyway, thank you to that "Special" Mom (you know who you are) I appreciated your insight. It made my day much much much more bearable.
In other news...her sats have been a little lower today. low 90's to high 80's. She has had a few naps today. We didn't get home until 4:30 AM and she hadn't been asleep at all. I had to put O2 on her a few times today. Nothing drastic.
Mostly awake today. No crying. Still very swollen in diaper area. She has only had 3 very small wet diapers and 1 poop today. I think it hurts so she's holding it in. I'm fairly sure we are going to have a big mess in the next 24 hours. THere have been a few blood tinged spots in her diaper (from the swollen area). Her lips are very dry to the point of bleeding. SHe is getting her normal amount of liquids/feeds.
It's nothing.....right?
So last night back in the ER...The swab they did to see if she had an overgrowth of bad bacteria in her vagina came back negative. SO they did 2 more swabs to test for strep (in the vagina) and gonnorrhea and chlamidia or maybe it was syphilus?(2 STD's). I said," now gonorrhea and clamidia are sexually transmitted diseases, is there any other way to contract them?" She said no. She said we don't suspect anything will show up on them but we feel like we need to test for it. I'm kind of freaking out about it. I completely trust everyone who takes care of her. I am praying for strep. We won't know for 2 days. I almost wished I hadn't asked what they were testing for. Not really. But almost.
The snot culture results will be in this morning.
THey gave us two presciptions: amoxicillan and a one dose something or other. THey are treating as if it is Strep.
The snot culture results will be in this morning.
THey gave us two presciptions: amoxicillan and a one dose something or other. THey are treating as if it is Strep.
we're home...so tired
We're home. We got discharged at 3:30 AM. Home at 4:30 AM. Everything is fine. I will have to update later. I am soooooo tired and need to get kids ready for school now.
Errrrrrr..E.R. (Grumbling)
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.
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.
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!!!!!
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