Ellie was sleepy this morning. But now she is awake and happy.
I am needing to suction her every few hours to keep her sats up (with o2).
That sounds bad---but really she is doing really well.
She doesn't seem to be coughing as much.
I asked how long you are contagious. They said really contagious for the first 4 or 5 days. We are 8 days out. I think she'll still stay home from church tomorrow.
As soon as we can get her off of the oxygen, then she can go back to school.
I think she is excited to be getting new couches today....oh wait that's me!
Saturday, February 20, 2010
Friday, February 19, 2010
Home
We're home.
She is on 1/8 liter during the day and 3 liters at night.
She still has a cough. But other than the o2 and the cough she is doing great. She alert and awake and happy.
She is on 1/8 liter during the day and 3 liters at night.
She still has a cough. But other than the o2 and the cough she is doing great. She alert and awake and happy.
Thursday, February 18, 2010
Metabolics
I spoke with the metabolic geneticist. I had met with him several months ago and he ran some tests trying to figure out her hypoglycemia.
He wanted to run some more blood tests. The results won't be back for several weeks.
I am 99.8% sure we'll be coming home tomorrow. She is doing really well. We have her on 0.12 of a liter of oxygen. We tried taking her off, but her sats drop. THat's Ok, we can go home on O2. Not a big deal.
We'll see how she does overnight.
SHe was really sleepy, grinding teeth, grumpy today. Then she had a BM and now she is REALLY happy. (She hadn't had one since at least Monday). She is smiling and signing more.
We watched Hannah Montana (one of her favorites).
He wanted to run some more blood tests. The results won't be back for several weeks.
I am 99.8% sure we'll be coming home tomorrow. She is doing really well. We have her on 0.12 of a liter of oxygen. We tried taking her off, but her sats drop. THat's Ok, we can go home on O2. Not a big deal.
We'll see how she does overnight.
SHe was really sleepy, grinding teeth, grumpy today. Then she had a BM and now she is REALLY happy. (She hadn't had one since at least Monday). She is smiling and signing more.
We watched Hannah Montana (one of her favorites).
No RSV
Okay---so she doesn't have RSV. But she does have the Human Metapneumo Virus.
She is doing well. She is down to 1/2 liter of oxygen during the day. They had her at 3 liters during the night. But I think they could have weened it down.
Today's plan is to ween the daytime Oxygen. Then we might go home tomorrow.
All labs look good.
She is awake and happy.
Her temp has been in the 98 F range. Which is higher than normal (her norm is 95-96.5). But she hasn't spiked any fevers.
I can't remember if I said this...They cut her CLonidine in half. (The clonidine was to level out her temps). They lowered it to avoid her low heartrates. So far since lowering it she hasn't dropped. But then again she has a slight fever and is sick so her heartrate would be elevated.
She has not been crying any more.
Her liver enzymes are off. They are going to talk to gastroenterology about it. It could just be the virus.
We are supposed to follow up with endocrinology about her blood sugar, thyroid, cortisol etc...
I think I might also make an appt with metabolics.
She is doing well. She is down to 1/2 liter of oxygen during the day. They had her at 3 liters during the night. But I think they could have weened it down.
Today's plan is to ween the daytime Oxygen. Then we might go home tomorrow.
All labs look good.
She is awake and happy.
Her temp has been in the 98 F range. Which is higher than normal (her norm is 95-96.5). But she hasn't spiked any fevers.
I can't remember if I said this...They cut her CLonidine in half. (The clonidine was to level out her temps). They lowered it to avoid her low heartrates. So far since lowering it she hasn't dropped. But then again she has a slight fever and is sick so her heartrate would be elevated.
She has not been crying any more.
Her liver enzymes are off. They are going to talk to gastroenterology about it. It could just be the virus.
We are supposed to follow up with endocrinology about her blood sugar, thyroid, cortisol etc...
I think I might also make an appt with metabolics.
Wednesday, February 17, 2010
RSV, etc...
Well, Ellie started having a cough on Fri. Jason and the baby also had a cough/cold so I wasn't too worried about it.
On Mon night I had to add oxygen to her bi-pap and also Tues. She was also cying off and on so I thought maybe it was an ear infection.
I took her to the pediatrician on Tues morn. He said no ear infection. He said her throat was a little red. He tested for strep and it was negative. He said that her breathing was a little rattly.
He wrote for blood work and a chest x-ray.
Ellie had an appointment at Primary's to refill her baclofen pump later that afternoon. So I did the blood and x-ray at Primary's since we were already there.
The pediatrician said that if the x-ray showed pnemonia that we should go to the ER.
The x-ray showed pnemonia starting.
So about 5:25 PM we checked into the ER at PCMC.
They ran blood cultures and checked her snot for RSV.
She tested positive for RSV and also Human Metapneumo Virus. The second one is very similar to RSV.
They admitted us. THey said that RSV is raging right now. They put us in NTU (Neuroscience Trauma Unit) because the Medical Unit was completely full. They said that they are double and triple bunking kids upstairs right now. Ellie has her own room
The parent bed in NTU are WAY WAY better than medical. They are more like a futon.
We finally got into a room at 10 PM last night. By the time we got settled in it was midnight.
They said that RSV peaks around 4-7 days. We are at about day 5.
Today we have weaned her O2 to 1 liter (down from 2).
SHe is still coughing occasionally. She is doing well. SHe has been awake and comfortable.
This morning she spiked a fever of 101.8. It came right down with tylenol and an ice water sponge bath. Her temp has been stable for the rest of the day.
Tomorrow morning they are going to recheck her cortisol and thyroid (Remember she had some weird readings on her last hospitalization).
also a CBC and blood gas.
Yesterday her white blood cells were lower than they wanted. I said "don't your blood cells go higher when you are sick?" They said that they can go higher or lower. Today her white blood cells came up a little bit. So that shows that she is fighting and getting better.
Nothing has grown out of her blood cultures.
She doesn't have a focalized pnemonia which would indicate a bacterial infection.
WHat they saw on x-ray was the RSV. She does not have RSV and pnemonia.
SPRING WHERE ARE YOU?!?!?!?
We're doing fine. We'll be home in a few days.
As a side note... Tabitha had a cough and it got better. Then Millie just came down with a cough. They went to the Dr. today and he said that if Ellie has it, then they have it too.
On Mon night I had to add oxygen to her bi-pap and also Tues. She was also cying off and on so I thought maybe it was an ear infection.
I took her to the pediatrician on Tues morn. He said no ear infection. He said her throat was a little red. He tested for strep and it was negative. He said that her breathing was a little rattly.
He wrote for blood work and a chest x-ray.
Ellie had an appointment at Primary's to refill her baclofen pump later that afternoon. So I did the blood and x-ray at Primary's since we were already there.
The pediatrician said that if the x-ray showed pnemonia that we should go to the ER.
The x-ray showed pnemonia starting.
So about 5:25 PM we checked into the ER at PCMC.
They ran blood cultures and checked her snot for RSV.
She tested positive for RSV and also Human Metapneumo Virus. The second one is very similar to RSV.
They admitted us. THey said that RSV is raging right now. They put us in NTU (Neuroscience Trauma Unit) because the Medical Unit was completely full. They said that they are double and triple bunking kids upstairs right now. Ellie has her own room
The parent bed in NTU are WAY WAY better than medical. They are more like a futon.
We finally got into a room at 10 PM last night. By the time we got settled in it was midnight.
They said that RSV peaks around 4-7 days. We are at about day 5.
Today we have weaned her O2 to 1 liter (down from 2).
SHe is still coughing occasionally. She is doing well. SHe has been awake and comfortable.
This morning she spiked a fever of 101.8. It came right down with tylenol and an ice water sponge bath. Her temp has been stable for the rest of the day.
Tomorrow morning they are going to recheck her cortisol and thyroid (Remember she had some weird readings on her last hospitalization).
also a CBC and blood gas.
Yesterday her white blood cells were lower than they wanted. I said "don't your blood cells go higher when you are sick?" They said that they can go higher or lower. Today her white blood cells came up a little bit. So that shows that she is fighting and getting better.
Nothing has grown out of her blood cultures.
She doesn't have a focalized pnemonia which would indicate a bacterial infection.
WHat they saw on x-ray was the RSV. She does not have RSV and pnemonia.
SPRING WHERE ARE YOU?!?!?!?
We're doing fine. We'll be home in a few days.
As a side note... Tabitha had a cough and it got better. Then Millie just came down with a cough. They went to the Dr. today and he said that if Ellie has it, then they have it too.
Wednesday, February 10, 2010
Update
Ellie is doing well. SHe hasn't dropped her temp for a while now. Over the weekend she was up a little into the 97 point somethings.
Heartrate is still dropping on some nights into the 30's. Maybe it has always done it. I don't know?!?!? On those nights I either sleep with her or sit by her bed.
So the last 2 nights her temp has been reading in the 95's or 96's, but er heartrate has still been dropping. I still try warming her up with a heater and electric blanket. When the monitor starts alarming I pinch her or startle her to bring up her heartrate. Once the room gets warmer (over 80 degrees) then her heartrate seems to stay in the mid 40's. THen I can turn down the heat and go to bed.
Typically I leave her door open so that I can hear her alarms and her breathing, but to keep the heat in we have been closing the door. But then I can't hear the alarms very well. Something is wrong with our baby monitors. I will have to look at them when I'm not so sleepy.
Around 7 PM she has been crying to go to bed.
We have started checking her heeartrate before we give her sleeping pill. It is already low then we only give her 1/4. But then I don't think she sleeps well and then she is tired the nxt day. She really needs 1/2 (normal dose) but I'm afraid it will lower her heartrate even more.
Heartrate is still dropping on some nights into the 30's. Maybe it has always done it. I don't know?!?!? On those nights I either sleep with her or sit by her bed.
So the last 2 nights her temp has been reading in the 95's or 96's, but er heartrate has still been dropping. I still try warming her up with a heater and electric blanket. When the monitor starts alarming I pinch her or startle her to bring up her heartrate. Once the room gets warmer (over 80 degrees) then her heartrate seems to stay in the mid 40's. THen I can turn down the heat and go to bed.
Typically I leave her door open so that I can hear her alarms and her breathing, but to keep the heat in we have been closing the door. But then I can't hear the alarms very well. Something is wrong with our baby monitors. I will have to look at them when I'm not so sleepy.
Around 7 PM she has been crying to go to bed.
We have started checking her heeartrate before we give her sleeping pill. It is already low then we only give her 1/4. But then I don't think she sleeps well and then she is tired the nxt day. She really needs 1/2 (normal dose) but I'm afraid it will lower her heartrate even more.
Tuesday, February 2, 2010
Another long night
Last night was weird. She was asleep and her heartrate kept dropping into the 30's (like it does when her temp drops). But her temp was fine (95.7). She has been consistently running in the 95's or 96's.
THe Dr. said if her heartrate drops to stimulate her. Basically hurt her. Like pinch her fingers, etc... To get her heartrate up. So I did. It would bring it up for a few seconds but would immediately go back down.
After a while of that I decided to turn up the space heaters and electric blanket and see what happened. Her heartrate started raising. I climbed in bed with her to make sure she didn't get too hot. I fell asleep in bed with her and woke up at 5 AM.
THe heat brought her heartrate up. WHat does this mean?
I suppose I should have taken a rectal temp. But she was asleep and I was tired too.
Anyway, weird!
Tormorrow we pick up a holter monitor. It will strap to her and she will wear it around for a few days to monitor her heart rhythms.
THe Dr. said if her heartrate drops to stimulate her. Basically hurt her. Like pinch her fingers, etc... To get her heartrate up. So I did. It would bring it up for a few seconds but would immediately go back down.
After a while of that I decided to turn up the space heaters and electric blanket and see what happened. Her heartrate started raising. I climbed in bed with her to make sure she didn't get too hot. I fell asleep in bed with her and woke up at 5 AM.
THe heat brought her heartrate up. WHat does this mean?
I suppose I should have taken a rectal temp. But she was asleep and I was tired too.
Anyway, weird!
Tormorrow we pick up a holter monitor. It will strap to her and she will wear it around for a few days to monitor her heart rhythms.
Monday, February 1, 2010
More Crying
Her temp stayed up over the weekend. I know I said I didn't like the Clonidine. But I think now I do. Her body feels warm. Her BP never dropped. I don't know that she's happier or more comfortable with the clonidine, but I don't think she's worse off.
Last night she started crying about 7 PM. (The night before it was at 6 PM). She was doing the same thing she did the night before (smack lips, drool a lot and cry). I told her to smack her lips when I touched the part of her body that hurt. THat was unfruitful. So we put her to bed. We checked her heartrate. It wasn't up. So we knew that she probably wasn't in pain. She was still crying in bed. We gave her her meds (including her nightly sleeping pill). She stopped crying. So I think she knows that we give her meds (through her g-tube) into her tummy. SHe associates that with eating. Her old sign for eating was smacking her lips. SO she was saying feed me my meds/sleeping pill so I can go to sleep. We'll have to see if the trend keeps up. She is really smart. SHe communicates all of the time. We are the slow ones that have to figure out what she is saying.
Her signs change all of the time depending on her abilities at the time. She had an old sign for bed (she would bring her arms into her chest and shiver).
SO we just have to try and keep up with her expanding vocabulary of signs.
After we gave her the sleeping pill last night I went in to check on her to see if she was asleep and ready for her bi-pap mask. I thought she was asleep, but then she started kicking one of ther legs. THat means she wants a diaper change or a change of position (usually diaper). ANd lo and behold she did need a change.
What a smartie pants!
Last night she started crying about 7 PM. (The night before it was at 6 PM). She was doing the same thing she did the night before (smack lips, drool a lot and cry). I told her to smack her lips when I touched the part of her body that hurt. THat was unfruitful. So we put her to bed. We checked her heartrate. It wasn't up. So we knew that she probably wasn't in pain. She was still crying in bed. We gave her her meds (including her nightly sleeping pill). She stopped crying. So I think she knows that we give her meds (through her g-tube) into her tummy. SHe associates that with eating. Her old sign for eating was smacking her lips. SO she was saying feed me my meds/sleeping pill so I can go to sleep. We'll have to see if the trend keeps up. She is really smart. SHe communicates all of the time. We are the slow ones that have to figure out what she is saying.
Her signs change all of the time depending on her abilities at the time. She had an old sign for bed (she would bring her arms into her chest and shiver).
SO we just have to try and keep up with her expanding vocabulary of signs.
After we gave her the sleeping pill last night I went in to check on her to see if she was asleep and ready for her bi-pap mask. I thought she was asleep, but then she started kicking one of ther legs. THat means she wants a diaper change or a change of position (usually diaper). ANd lo and behold she did need a change.
What a smartie pants!
Saturday, January 30, 2010
CT
So the CT showed that her lateral and 4th ventricles in her brain were slightly larger than in previous scans. But they did not show any pressure.
To explain...all of us have ventricles (spaces) in our brain filled with fluid. These act as a cushion. If we didn't have these spaces then every time we got a slight bump on the head it would knock us out or damage our brain. Ellies ventricles are enlarged and always have been. Now they are saying they are slightly larger than they have been before.
When they look at fluid in the brain it is like a water balloon. If you have an empty balloon the sides are floppy and wavy. If you fill the balloon with water then the sides of the balloon are smooth. So when you have pressure in your ventricles then the sides look smooth.
So yes they are slightly larger than normal, but they are not showing the signs of pressure.
On Fri the pediatrician talked to the on call neurosurgeon about the results. The neurosurgeon (fellow or resident)did not think that this could be causing any of her problems, but he said that he would talk to ELlie's Dr. on Mon.
We are not sure ont he blood work results. The Pediatrician called me from his cell phone after he left his office.
Her sinus' did show a little stuff (i'm not sure what he said) but still probably not the cause of all of her problems. The ENT has wanted to go back in and clean them out. She had her tonsils, adenoids and sinus' done in the beginning of Sept. She had a sinus infection a week or two later. SO her wanted to go back in and look at them again. But she has not been well enough.
The pediatrician is wondering if she can't handle stress. Remember her thyroid results were weird and her cortisol levels were normal even though it should have been elevated (since she was in stress). He is going to call the pediatric endocrinologist on Mon. He suggested we might have to act as though her endocrine gland (I think that is what he said---I didn't write it down)is not working and give her meds for that. Then in the winter put her on hydrocortisone. He also thinks that it might be related to her hypoglycemia.
If all works out---we'll know more on Monday.
FOr now she is keeping her temp up. We are keeping a blanket on her all of the time. Bundling her well when we go out. We rush from house to car as fast as we can. As soon as I get her in the house I put her in front of a space heater (she loves it and signs more, more, more). We are taking her temp tons of times a day.
Today we took her to Ace's basketball game. It was freezing in the gym. I was worried. SHe did drop a little---to 93.5, but I thought that was pretty good. She has been running in the 95's and 96's typically.
She feels warm. It is weird because she has ALWAYS felt SOOOOOOO cold!
It has been 10 days since we started the med. We don't have to take the BP anymore. YEAH! I really didn't like that. If we have to do it again, I'm buying an automatic BP machine. I don't care if it does cost $100. It would be worth it.
She has stopped being clammy and pale.
I think she is doing pretty good! It is a lot of work to keep her warm, but it seems to be working.
SHe was awake all day today. She did start crying about 6 PM for unknown reasons. we gave her ibuprofen. It seemed to help.
I wouldn't be surprised if she is sleepy tomorrow because we have had 2 late nights in a row.
Ellie and I both got a blessing tonight. We have had a rough week.
To explain...all of us have ventricles (spaces) in our brain filled with fluid. These act as a cushion. If we didn't have these spaces then every time we got a slight bump on the head it would knock us out or damage our brain. Ellies ventricles are enlarged and always have been. Now they are saying they are slightly larger than they have been before.
When they look at fluid in the brain it is like a water balloon. If you have an empty balloon the sides are floppy and wavy. If you fill the balloon with water then the sides of the balloon are smooth. So when you have pressure in your ventricles then the sides look smooth.
So yes they are slightly larger than normal, but they are not showing the signs of pressure.
On Fri the pediatrician talked to the on call neurosurgeon about the results. The neurosurgeon (fellow or resident)did not think that this could be causing any of her problems, but he said that he would talk to ELlie's Dr. on Mon.
We are not sure ont he blood work results. The Pediatrician called me from his cell phone after he left his office.
Her sinus' did show a little stuff (i'm not sure what he said) but still probably not the cause of all of her problems. The ENT has wanted to go back in and clean them out. She had her tonsils, adenoids and sinus' done in the beginning of Sept. She had a sinus infection a week or two later. SO her wanted to go back in and look at them again. But she has not been well enough.
The pediatrician is wondering if she can't handle stress. Remember her thyroid results were weird and her cortisol levels were normal even though it should have been elevated (since she was in stress). He is going to call the pediatric endocrinologist on Mon. He suggested we might have to act as though her endocrine gland (I think that is what he said---I didn't write it down)is not working and give her meds for that. Then in the winter put her on hydrocortisone. He also thinks that it might be related to her hypoglycemia.
If all works out---we'll know more on Monday.
FOr now she is keeping her temp up. We are keeping a blanket on her all of the time. Bundling her well when we go out. We rush from house to car as fast as we can. As soon as I get her in the house I put her in front of a space heater (she loves it and signs more, more, more). We are taking her temp tons of times a day.
Today we took her to Ace's basketball game. It was freezing in the gym. I was worried. SHe did drop a little---to 93.5, but I thought that was pretty good. She has been running in the 95's and 96's typically.
She feels warm. It is weird because she has ALWAYS felt SOOOOOOO cold!
It has been 10 days since we started the med. We don't have to take the BP anymore. YEAH! I really didn't like that. If we have to do it again, I'm buying an automatic BP machine. I don't care if it does cost $100. It would be worth it.
She has stopped being clammy and pale.
I think she is doing pretty good! It is a lot of work to keep her warm, but it seems to be working.
SHe was awake all day today. She did start crying about 6 PM for unknown reasons. we gave her ibuprofen. It seemed to help.
I wouldn't be surprised if she is sleepy tomorrow because we have had 2 late nights in a row.
Ellie and I both got a blessing tonight. We have had a rough week.
Friday, January 29, 2010
Sometimes I forget to post
We did all of the environmental changes to help her maintain her body temp. That seems to be helping. BUt it is a lot of work to always make sure she as a space heater on and blankets etc...
She dropped again Tues night about 6 PM. We had put her in her bedroom and didn't realize the heat vent was closed. We caught her at 91 deg F. It took 2 hours of warming her to get her up to the hgh 92's. At 91 her heartrate was droping into the high 30's. As her temp comes up so does her heartrate.
It really stresses me out when she drops, especially when her heartrate drops.
I took her to the pediatrician on Wed morning to talk all of this over with him. He suggested that maybe it is pressure on her brain stem because that is where your temp and your heartrate are regulated. She has a cyst where your cerebellum is (right above the brain stem) and she also has hydrocephalus (extra fluid inside of her brain). So that totally makes sense. He wanted to send her in for a CT scan. Why didn't the Dr.'s at Primary's think of this???
I asked him about redrawing bl ood because both of the previous times they did the blood cultures she was on oral antibiotics already. I thought maybe that could be masking an infection. He agreed.
Wed we had the pediatrician in the morning and 2 more Dr.'s appts in the afternoon. Dysphasia(eating problems)and nutrition (those 2 are together), and the hand Dr.
I talked to nutrition about the possibility that she might not be getting enough calories. We changed her formula to a lot lower calories right before this whole temp thing came about. She had been gaining too much weight so they reformulated her feeds so that she would be losing weight. SHe said it's possible but not likely. We might try going back up on her feeds if she continues to drop.
She has developed a trigger finger (pops when you straighten the knuckle) on her left ring finger. They injected steroids into the swollen tendon. We have to wait a week to see if it helps. It was interesting because I thought the problem was in her finger, but it was in the palm of her hand. The fingers are controlled by a series of pulleys that go through a narrow opening. A trigger finger is when one of the pulleys gets swollen so it is hard to go through the narrow opening. So the injection was in the palm of her hand.
Thursday we had another appt in SLC. This time it was the follow up with rehab (they are in charge of the new medicine-clonidine). I spoke with her about the 2 drops in temp she has had at home since starting the med. SHe wanted to leave her on the same dose for a little longer. If she continues to drop then we would raise the dose. If her BP doesn't drop within 10 days (today is day 9), then I can stop taking per BP and just give her the med. Thank goodness. Her pulse is very faint and is very hard to hear plus I'm new at it and it's hard anyway. We should have bought an automatic BP cuff instead of manual. But I didn't want to spend the money for only 10 days.
While we were at PCMC (Primary Children's Medical Center) we also did the head CT and blood work. Along with looking at the fluid pressure in her brain I also asked her pediatrician to write orders for them to look at her sinus'. The rehab Dr. said that she would only drop her temp when she is sick. Since they can't find anything in her blood and she has so many problems with sinus' I thoght that maybe she has a sinus inf. Not that a sinus infection would cause your temp to drop dangerously low by itself, but maybe that is the sickness she has right now. THen because she is sick her temps drop. If we can get rid of the sickness then her temp won't drop. Or maybe we just really need spring to get here fast.
Needless to say, we are sick to death of Dr.'s.
She dropped again Tues night about 6 PM. We had put her in her bedroom and didn't realize the heat vent was closed. We caught her at 91 deg F. It took 2 hours of warming her to get her up to the hgh 92's. At 91 her heartrate was droping into the high 30's. As her temp comes up so does her heartrate.
It really stresses me out when she drops, especially when her heartrate drops.
I took her to the pediatrician on Wed morning to talk all of this over with him. He suggested that maybe it is pressure on her brain stem because that is where your temp and your heartrate are regulated. She has a cyst where your cerebellum is (right above the brain stem) and she also has hydrocephalus (extra fluid inside of her brain). So that totally makes sense. He wanted to send her in for a CT scan. Why didn't the Dr.'s at Primary's think of this???
I asked him about redrawing bl ood because both of the previous times they did the blood cultures she was on oral antibiotics already. I thought maybe that could be masking an infection. He agreed.
Wed we had the pediatrician in the morning and 2 more Dr.'s appts in the afternoon. Dysphasia(eating problems)and nutrition (those 2 are together), and the hand Dr.
I talked to nutrition about the possibility that she might not be getting enough calories. We changed her formula to a lot lower calories right before this whole temp thing came about. She had been gaining too much weight so they reformulated her feeds so that she would be losing weight. SHe said it's possible but not likely. We might try going back up on her feeds if she continues to drop.
She has developed a trigger finger (pops when you straighten the knuckle) on her left ring finger. They injected steroids into the swollen tendon. We have to wait a week to see if it helps. It was interesting because I thought the problem was in her finger, but it was in the palm of her hand. The fingers are controlled by a series of pulleys that go through a narrow opening. A trigger finger is when one of the pulleys gets swollen so it is hard to go through the narrow opening. So the injection was in the palm of her hand.
Thursday we had another appt in SLC. This time it was the follow up with rehab (they are in charge of the new medicine-clonidine). I spoke with her about the 2 drops in temp she has had at home since starting the med. SHe wanted to leave her on the same dose for a little longer. If she continues to drop then we would raise the dose. If her BP doesn't drop within 10 days (today is day 9), then I can stop taking per BP and just give her the med. Thank goodness. Her pulse is very faint and is very hard to hear plus I'm new at it and it's hard anyway. We should have bought an automatic BP cuff instead of manual. But I didn't want to spend the money for only 10 days.
While we were at PCMC (Primary Children's Medical Center) we also did the head CT and blood work. Along with looking at the fluid pressure in her brain I also asked her pediatrician to write orders for them to look at her sinus'. The rehab Dr. said that she would only drop her temp when she is sick. Since they can't find anything in her blood and she has so many problems with sinus' I thoght that maybe she has a sinus inf. Not that a sinus infection would cause your temp to drop dangerously low by itself, but maybe that is the sickness she has right now. THen because she is sick her temps drop. If we can get rid of the sickness then her temp won't drop. Or maybe we just really need spring to get here fast.
Needless to say, we are sick to death of Dr.'s.
Saturday, January 23, 2010
Better?!?!?!?
So I posted about her temp drop on Thur night. So Fri I left messages at her pediatrician, 2 messages at Rehab and an email to rehab. Since I couldn't get ahold of anyone I took hr to PCMC ER.
Although she wasn't having problems at the time I took her in I couldn't have that happening every night.
Jason got off of work and came with me to the ER because I could not mentally and emotionally take anymore.
The ER dr.'s got the on-call rehab dr. to come down and talk to us. THankfully it was the same dr. who had worked with us when we were inpatient.
He sat with us for at least a half of an hour and talked and listened and brainstormed with us. It made us feel much better.
I was concerned that this medicine was supposed to help and yet the night that we come home her temp drops. He said that she was on a very low starting dose. I have an appt. next week with a rehab dr. and we can go up on the dose if it is not doing the trick.
THe Dr. also explained something that I knew, but never realized I knew. Ellie is colder than us in the winter and warmer than us in the summer.
I wanted to know if he thought the temp was making her heartrate drop or vice versa. He said yes, the temp was the first thing.
I also got to talk to him about the stuff I read ont he internet. I read that if your temp falls into the 80's death is imminent and also that you shouldn't warm up a person with hypothermia more than 1 degree per hour. He said that is only for people who fall in an ice cold lake or something. We shouldn't worry about the speed of warming her up.
I asked what temp we should try to stay above. Or at what point would we either call or bring her to the ER. He said for a "normal" person 94. For Ellie maybe 92. If we can't get to and keep her at 92 for a few hours then we should take her in.
THe literature that the nurse gave me on clonidine said not to stop taking it all together, you have to taper off because it can cause your blood pressure to skyrocket. He said that she is on such a tiny dose that it would never happen. We could skip 3 or four doses and nothing would happen, or we could quit taking it all together and nothing would happen.
We were not admitted to the hospital---we got to come home.
I was ready to quit the clonidine because of her pale/clamminess/drugged look. But he said that is not a side effect of clonidine. So I am willing to give it another try. The pale/claminess/sleepiness went away when I skipped a dose. If they come back then we'll have to reevaluate.
So far her BP's have been fine. We are not supposed to give the dose if her systolic (top #) drops below 80.
Yesterday her temp stayed an average of 96-97. It was awesome. She felt warm all day long. It kind of feels weird to feel Ellie's skin warm though. It actually kind of creeps me out. Because usually she is FREEZING. SHe was also awake all day yesterday (Fri).
Friday night she had a sleep study scheduled for her sleep apnea. (Unrelated to the cold temps-it was scheduled a long time ago). So Ellie and I did that last night. THey hook about 20-30 electrodes all over you, watch you with a video camera, listen with a baby monitor, you have oxygen tubing and a bi-pap mask on. How they think you can sleep "normally" with all that stuff on, I don't know.
Anyway, we got there at 8:30 last night, got to sleep about 10 PM. She woke up at 5:30 AM and we left about 6 AM. She is sleepy today---obviously.
I told the sleep people about her low temps and low heartrate. So I asked them to wake me up if her heartrate dropped into the low 50's. She looked at me like "can you be alive if your heart-rate drops that low?"
She maintained her heartrate last night, so I'm assuming she maintained her temp.
We made a lsit of things we are changing to prevent the low temps. Here they are...
-reprogram thermostat so it doesn't go lower at night
-Move her bed from the front room (where it has been) (and probably the draftiest room in the house---old windows) back to her own bedroom (a lot smaller, new windows, it is the warmest room in the house)
-put insulation in her bedroom windows (you know that stuff you put ont he outside of your house before you put up siding)
-Buy an electric blanket, just be careful not to let it get too hot
-Buy a space heater with a thermostat for her bedroom
-position her bed on the interior wall, instead of exterior
-put smaller amounts of formula in feeding pump to avoid using icepacks around it
-buy fleece sheets for her bed
-reprogram the apnea monitor (raise the low heartrate setting) so that it will wake us up if her heartrate drops to 50, then we can wake up, take her temp and warm her up
-put up blinds (we have had them for years, but haven't put them up)
-No more camping for Ellie if it gets cold at night, she will "get" to stay at Grandma's house (always while camping her heartrate drops during the night---I never figured out why until now) (She also has allergies) (She hates camping---she just sleeps the whole time) (And she absolutely loves condos or hotels)
-Lastly---look at moving into a new house
Really this is all coming together. I am feeling much more confident and reassured.
Although she wasn't having problems at the time I took her in I couldn't have that happening every night.
Jason got off of work and came with me to the ER because I could not mentally and emotionally take anymore.
The ER dr.'s got the on-call rehab dr. to come down and talk to us. THankfully it was the same dr. who had worked with us when we were inpatient.
He sat with us for at least a half of an hour and talked and listened and brainstormed with us. It made us feel much better.
I was concerned that this medicine was supposed to help and yet the night that we come home her temp drops. He said that she was on a very low starting dose. I have an appt. next week with a rehab dr. and we can go up on the dose if it is not doing the trick.
THe Dr. also explained something that I knew, but never realized I knew. Ellie is colder than us in the winter and warmer than us in the summer.
I wanted to know if he thought the temp was making her heartrate drop or vice versa. He said yes, the temp was the first thing.
I also got to talk to him about the stuff I read ont he internet. I read that if your temp falls into the 80's death is imminent and also that you shouldn't warm up a person with hypothermia more than 1 degree per hour. He said that is only for people who fall in an ice cold lake or something. We shouldn't worry about the speed of warming her up.
I asked what temp we should try to stay above. Or at what point would we either call or bring her to the ER. He said for a "normal" person 94. For Ellie maybe 92. If we can't get to and keep her at 92 for a few hours then we should take her in.
THe literature that the nurse gave me on clonidine said not to stop taking it all together, you have to taper off because it can cause your blood pressure to skyrocket. He said that she is on such a tiny dose that it would never happen. We could skip 3 or four doses and nothing would happen, or we could quit taking it all together and nothing would happen.
We were not admitted to the hospital---we got to come home.
I was ready to quit the clonidine because of her pale/clamminess/drugged look. But he said that is not a side effect of clonidine. So I am willing to give it another try. The pale/claminess/sleepiness went away when I skipped a dose. If they come back then we'll have to reevaluate.
So far her BP's have been fine. We are not supposed to give the dose if her systolic (top #) drops below 80.
Yesterday her temp stayed an average of 96-97. It was awesome. She felt warm all day long. It kind of feels weird to feel Ellie's skin warm though. It actually kind of creeps me out. Because usually she is FREEZING. SHe was also awake all day yesterday (Fri).
Friday night she had a sleep study scheduled for her sleep apnea. (Unrelated to the cold temps-it was scheduled a long time ago). So Ellie and I did that last night. THey hook about 20-30 electrodes all over you, watch you with a video camera, listen with a baby monitor, you have oxygen tubing and a bi-pap mask on. How they think you can sleep "normally" with all that stuff on, I don't know.
Anyway, we got there at 8:30 last night, got to sleep about 10 PM. She woke up at 5:30 AM and we left about 6 AM. She is sleepy today---obviously.
I told the sleep people about her low temps and low heartrate. So I asked them to wake me up if her heartrate dropped into the low 50's. She looked at me like "can you be alive if your heart-rate drops that low?"
She maintained her heartrate last night, so I'm assuming she maintained her temp.
We made a lsit of things we are changing to prevent the low temps. Here they are...
-reprogram thermostat so it doesn't go lower at night
-Move her bed from the front room (where it has been) (and probably the draftiest room in the house---old windows) back to her own bedroom (a lot smaller, new windows, it is the warmest room in the house)
-put insulation in her bedroom windows (you know that stuff you put ont he outside of your house before you put up siding)
-Buy an electric blanket, just be careful not to let it get too hot
-Buy a space heater with a thermostat for her bedroom
-position her bed on the interior wall, instead of exterior
-put smaller amounts of formula in feeding pump to avoid using icepacks around it
-buy fleece sheets for her bed
-reprogram the apnea monitor (raise the low heartrate setting) so that it will wake us up if her heartrate drops to 50, then we can wake up, take her temp and warm her up
-put up blinds (we have had them for years, but haven't put them up)
-No more camping for Ellie if it gets cold at night, she will "get" to stay at Grandma's house (always while camping her heartrate drops during the night---I never figured out why until now) (She also has allergies) (She hates camping---she just sleeps the whole time) (And she absolutely loves condos or hotels)
-Lastly---look at moving into a new house
Really this is all coming together. I am feeling much more confident and reassured.
Friday, January 22, 2010
Bad night
This is a copy of an email I sent to her rehab Dr. this morning...
Dr. GOoch-
Ellie was inpatient this week at PCMC. WHen she came in on Sunday her temp was 31.1 C. and her heartrate was dropping into the 40's. After many tests they started her on CLonidine to try and regulate her autonomic nervous system.
we came home yesterday (Thur) after receiving 2 doses of clondine. When we got home she was clammy and pale. (she was not this way when we left the hospital.)
Last night at 11:30 PM her temp was 86 deg. F. and her heartrate was dropping into the 40's. We got her warmed up and her heartrate came back up also.
Her temp normally runs cold--I'm guessing about 96. This morning she was 97.4 . She is sleepy and she seems groggy/loopy/eyes glazed over.
If she would have done this in the hospital I don't think they would have discharged her.
I don't know whether to bring her in to ER, her pediatrician, taper off the clonidine, or if they can just readmit her without going back to the ER. The clonidine didn't keep her temp from dropping dangerously low. Something is wrong.
How long does the clonidine take to kick in?
I don't think I like the clonidine.
**************************end of email*******************
We probably should have gone back to the ER last night. But we prayed about it and felt like it would be OK to stay home. We put an electric blanket on her and I slept with her so we would know when to shut off the electric blanket. We have got to get this figured out. We can't go on like this. Too scary...Too stressful.
This morning she is actually on the warm side. Her temp runs cold. I'm guessing 96. THis morning she is 97.4. She is not quite as clammy as she was yesterday.
Her blood pressure has been OK.
We have got to do something.
Dr. GOoch-
Ellie was inpatient this week at PCMC. WHen she came in on Sunday her temp was 31.1 C. and her heartrate was dropping into the 40's. After many tests they started her on CLonidine to try and regulate her autonomic nervous system.
we came home yesterday (Thur) after receiving 2 doses of clondine. When we got home she was clammy and pale. (she was not this way when we left the hospital.)
Last night at 11:30 PM her temp was 86 deg. F. and her heartrate was dropping into the 40's. We got her warmed up and her heartrate came back up also.
Her temp normally runs cold--I'm guessing about 96. This morning she was 97.4 . She is sleepy and she seems groggy/loopy/eyes glazed over.
If she would have done this in the hospital I don't think they would have discharged her.
I don't know whether to bring her in to ER, her pediatrician, taper off the clonidine, or if they can just readmit her without going back to the ER. The clonidine didn't keep her temp from dropping dangerously low. Something is wrong.
How long does the clonidine take to kick in?
I don't think I like the clonidine.
**************************end of email*******************
We probably should have gone back to the ER last night. But we prayed about it and felt like it would be OK to stay home. We put an electric blanket on her and I slept with her so we would know when to shut off the electric blanket. We have got to get this figured out. We can't go on like this. Too scary...Too stressful.
This morning she is actually on the warm side. Her temp runs cold. I'm guessing 96. THis morning she is 97.4. She is not quite as clammy as she was yesterday.
Her blood pressure has been OK.
We have got to do something.
Thursday, January 21, 2010
Clonidine explanation
I guess I didn't make this clear...
Because her autonomic nervous system is unstable the clonidine (new med) is supposed to make it more level. THat way she shouldn't have lows and highs in her temp. THe original intent of the med is to lower blood pressure, so that of course is a side effect.
Because her autonomic nervous system is unstable the clonidine (new med) is supposed to make it more level. THat way she shouldn't have lows and highs in her temp. THe original intent of the med is to lower blood pressure, so that of course is a side effect.
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