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.
Saturday, January 30, 2010
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.
Home
We got home about 3:30-4 PM.
They tried to order us a home blood pressure machine and apparently insurance won't pay for it---even though it is medically necessary. THey want us to take her blood pressure several times a day and track it for 7-10 days.
So then the nurse had to teach me how to take a blood pressure.
THen I had Jason pick up a blood pressure cuff at Walgreen's on the way home. But it was too big. So I found a child's one at IHC Homecare at 4:53 and they closed at 5:00.
So Jason sped over there and got it.
When he got home we tried taking her blood pressure and couldn't really hear it. My respite worker called her roommate over who is in the nursing program and she had a hard time too.
We waited and tried again an hour later. THis time I could very faintly hear it.
She is pale and sleepy. Her body feels warmer than usual, but her temperature doesn't seem to be much different. Sleepiness can also be a side effect. We'll see how she does over the next few days. We have an appt. with rehab next week.
It's good to be home.
They tried to order us a home blood pressure machine and apparently insurance won't pay for it---even though it is medically necessary. THey want us to take her blood pressure several times a day and track it for 7-10 days.
So then the nurse had to teach me how to take a blood pressure.
THen I had Jason pick up a blood pressure cuff at Walgreen's on the way home. But it was too big. So I found a child's one at IHC Homecare at 4:53 and they closed at 5:00.
So Jason sped over there and got it.
When he got home we tried taking her blood pressure and couldn't really hear it. My respite worker called her roommate over who is in the nursing program and she had a hard time too.
We waited and tried again an hour later. THis time I could very faintly hear it.
She is pale and sleepy. Her body feels warmer than usual, but her temperature doesn't seem to be much different. Sleepiness can also be a side effect. We'll see how she does over the next few days. We have an appt. with rehab next week.
It's good to be home.
Wednesday, January 20, 2010
We're staying
We are going to be staying at least until tomorrow afternoon.
They are going to start the clonidine, and they want to watch her blood pressures.
They are going to start the clonidine, and they want to watch her blood pressures.
Rehab Dr.
So the Rehab Dr. came.
He said the side effects of clonidine are that it lowers blood pressure. He is going to talk to the team and see what they think.
If we started it he would want to watch her for 24-36 hours!!!
So, we might not be coming home after all.
We'll have to see if they want to start the new med or not.
He said the side effects of clonidine are that it lowers blood pressure. He is going to talk to the team and see what they think.
If we started it he would want to watch her for 24-36 hours!!!
So, we might not be coming home after all.
We'll have to see if they want to start the new med or not.
New Plan
Their new theory is that because of her Agenesis of the Corpus Collosum (2 halves of her brain are not connected)that she has autonomic instability (her nervous system is not working right.)
THere is a medicine called clonidine that they want her to try. They are sending the rehab Dr. down to consult about the clonidine.
They also want to recheck her cortisol. It was a normal number, but she was in stress, so it should have been elevated.
So the plan is wait for Rehab Dr. to come down and consult, do a blodd draw tonight to check cortisol, go home, then go to her pediatrician in the morning and do another cortisol check. THe Pediatrician will then consult with Dr. Lindsay (endocrinology).
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THere is a medicine called clonidine that they want her to try. They are sending the rehab Dr. down to consult about the clonidine.
They also want to recheck her cortisol. It was a normal number, but she was in stress, so it should have been elevated.
So the plan is wait for Rehab Dr. to come down and consult, do a blodd draw tonight to check cortisol, go home, then go to her pediatrician in the morning and do another cortisol check. THe Pediatrician will then consult with Dr. Lindsay (endocrinology).
We love comments on our blog, that way we know who is following us!
Seizures
I have been here about 15 minutes this afternoon and she as had 2 seizures. They are a new kind of seizure (new kind to her). Her eyes are mostly closed but you can see her eyeballs (under her eyelids) are bouncing around (nystagmis). If you try opening her eyelids, her eyeballs are rolled back into her head. It is the same kind she was having in the ER on Sunday night when they gave her the adavan.
THey have paged the Dr. so we'll have to wait and talk to them.
THey have paged the Dr. so we'll have to wait and talk to them.
Echo...........(Echo.....Echo.......Echo)
They did another echo this morning. We haven't heard the results.
I'm guessing we'll come home today because she is doing fine now and they don't have any other ideas.
I guess we'll just have to start taking her temperature regularly. I don't know!?!?!?
I'm guessing we'll come home today because she is doing fine now and they don't have any other ideas.
I guess we'll just have to start taking her temperature regularly. I don't know!?!?!?
Tuesday, January 19, 2010
T3
T3 is normal.
I asked them which echo they were looking at. They said the one from the end of October (when she had the really bad pnemonia).
I said that she had another one in summer/early fall at McKay Dee. It said that she had Systolic Anterior Motion (SAM) in one of the valves. The Dr. looked at it and said that she would talk to her superior to see if they wanted to repeat the Echo.
We will probably be coming home tonight or tomorrow if they can't think of any other answers.
I just read a little about hypothermia, it was pretty scary. It said that you can die if your temp gets below 86, which hers was.
The Lord helped me interpret Ellie's sign to take her home from church and then prompted me to take her temp and check her o2/heart-rate. Then I prayed whether to go to Ogden Regional or Primary's. The Lord guided me to Primary Children's. Through all of these I have been guided. Although I didn't know it was the Holy Ghost leading and helping me at the time. I am thankful to a wise Heavenly Father and the promptings of the spirit.
I asked them which echo they were looking at. They said the one from the end of October (when she had the really bad pnemonia).
I said that she had another one in summer/early fall at McKay Dee. It said that she had Systolic Anterior Motion (SAM) in one of the valves. The Dr. looked at it and said that she would talk to her superior to see if they wanted to repeat the Echo.
We will probably be coming home tonight or tomorrow if they can't think of any other answers.
I just read a little about hypothermia, it was pretty scary. It said that you can die if your temp gets below 86, which hers was.
The Lord helped me interpret Ellie's sign to take her home from church and then prompted me to take her temp and check her o2/heart-rate. Then I prayed whether to go to Ogden Regional or Primary's. The Lord guided me to Primary Children's. Through all of these I have been guided. Although I didn't know it was the Holy Ghost leading and helping me at the time. I am thankful to a wise Heavenly Father and the promptings of the spirit.
Thyroid
so the things that would make her blood pressures be so wide apart are...
#1) sepsis (blood infection)---nothing has shown up
#2) Physical heart problem---she had an echo a few months ago and it was fine
#3) Thyroid.
So yesterday her TSH (Thyroid Stimulating Hormone) was High and her T4 was normal. So the TSH stimulates the T4. And the T4 is the actual thyroid hormone.
It should be that if the T4 is low then the TSH kicks in and should be high.
So they redid the lab and got the same results.
SO then the sent blood to check her T3. Normally they don't check the T3, but they decided to for her.
The Dr.'s think it is a lab error because they have 2 other kids in the hospital right now and are getting the same weird results.
If it is thyroid they would expect the T3 to come back high.
She is really fine and they would like to send her home. Here is my concern...When she was 83 F. she didn't feel cold. She wasn't acting weird. I took her temperature and checked her heartrate just because. THen she went into that continuous seizure. If we don't have an answer, then how can we detect this problem or prevent it from happening in the future.
But they are out of answers...they don't have any other ideas.
I need HOUSE! (..............................the TV show!)
#1) sepsis (blood infection)---nothing has shown up
#2) Physical heart problem---she had an echo a few months ago and it was fine
#3) Thyroid.
So yesterday her TSH (Thyroid Stimulating Hormone) was High and her T4 was normal. So the TSH stimulates the T4. And the T4 is the actual thyroid hormone.
It should be that if the T4 is low then the TSH kicks in and should be high.
So they redid the lab and got the same results.
SO then the sent blood to check her T3. Normally they don't check the T3, but they decided to for her.
The Dr.'s think it is a lab error because they have 2 other kids in the hospital right now and are getting the same weird results.
If it is thyroid they would expect the T3 to come back high.
She is really fine and they would like to send her home. Here is my concern...When she was 83 F. she didn't feel cold. She wasn't acting weird. I took her temperature and checked her heartrate just because. THen she went into that continuous seizure. If we don't have an answer, then how can we detect this problem or prevent it from happening in the future.
But they are out of answers...they don't have any other ideas.
I need HOUSE! (..............................the TV show!)
ok
She is awake, alert and doing well this morning. Her temp is stable and her blood pressures have returned to normal.
They drew her blood this morning at 5 to recheck the thyroid and stress hormones. I haven't heard any results.
She has tested positive for rhinovirus (common cold). She was positive 2 weeks ago also. It can shed for a long time.
They drew her blood this morning at 5 to recheck the thyroid and stress hormones. I haven't heard any results.
She has tested positive for rhinovirus (common cold). She was positive 2 weeks ago also. It can shed for a long time.
Monday, January 18, 2010
Can't get enough
Ellie can't get enough of Primary's so we checked back in Sunday night.
Going back about 4-5 weeks she had a junky cough. I took her to the Dr. He said it was a cold.
2 weeks later I took her back to the Dr. because she wasn't better. He said she had an ear infection so he prescribed antibiotics. Later that week (which was 2 weeks ago) we went to instacare because she wasn't getting better he said she had a slight pnemonia. We came to Primary's because she had had such a bad pnemonia in Oct/Nov that progressed so rapidly that I didn't want the same thing to happen.
Well they didn't admit her for the pnemonia, but because her temperatures were at 33 degrees celsius and her bans (immature white blood cells)were up. So they thought that she might be septic (have a blood infection). After 3 days in the hospital, the only thing she tested positive for was rhinovirus (the common cold).
3 days after discharge we followed up with her pediatrician. She had another ear infection. He prescribed more antibiotics.
On Sunday she still had a junky cough. It had gotten better, but not all of the way. She had been on antibiotics for 9 days, so she should have gotten better. At church she was shivering (which is her sign that she wants to go to bed). So I skipped Sacrament and took her home.
Just for fun I decided to take her temperature and check her sats. Her temp was 83 degrees farenheit. Her O2 was fine. Her heart-rate was dipping into the 40's but mainly hanging out in the low 60's/high 50's.
I threw about 5 blankets on her and pointed a space heater right at her. After about 20 minutes her temp was 85 degrees farenheit.
From 2 weeks earlier when they were worried about her temp I decided I better take her to the ER. SO I prayed to know whether to take her to Ogden Regional or Primary's.
I drove her to Primary's. When we got here they tried taking her temp and it wouldn't register on their thermometers. They tried ear, then armpit, then mouth, then rectal. Finally they got a temp of 31.1 degrees c. It was not even on their conversion cart it was so cold.
They warmed her up with this blanket that is like an air hockey table. The blanket is hooked up to a machine that blows warm air. Then the bottom of the blanket (next to your body) has holes in it. Hot air blows onto your body.
THey gave her heated IV fluids.
They did blood, urine, snot and spinal fluid (drawn from her shunt)tests. Everything so far is clean.
Her white blood cells are at the low end of normal. And her platelettes are also at the low end of normal.
After being in the ER for a few hours, she started having increased siezures. SO they gave her a dose of adavan. THen she still had a seizure so they gave her another dose of adavan. It totally knocked her out all night. They were worried she might be going static (non-stop seizures).
They got her temp up to 36.8. (37 is normal)
During the night her blood pressures were really bad. The 2 numbers were far apart.
This morning she has been wide awake and neurologically back to herself. SHe has needed a little blow-by O2 here and there. But really she has been fine. She still has her junky cough.
Her blood pressure has gotten back to normal and she has maintained her body temp.
They have sent in neurosurgery, neurology to consult.
They have sent off thyroid and cortisol tests to see if that is why her temp dropped so low. COrtisol kicks in to help your body deal with stress.
All blood, urine, spinal fluid are clean
Snot showed Rhinovirus (it can shed for a long time).
THe thyroid and cortisol tests were weird. SO they are going to do them again tomorrow.
Anyway, she's really doing well. But we would like an answer so we can avoid it in the future.
Low temps are more dangerous than high temps. THe Dr. on the floor said he had never seen a temp so low.
Going back about 4-5 weeks she had a junky cough. I took her to the Dr. He said it was a cold.
2 weeks later I took her back to the Dr. because she wasn't better. He said she had an ear infection so he prescribed antibiotics. Later that week (which was 2 weeks ago) we went to instacare because she wasn't getting better he said she had a slight pnemonia. We came to Primary's because she had had such a bad pnemonia in Oct/Nov that progressed so rapidly that I didn't want the same thing to happen.
Well they didn't admit her for the pnemonia, but because her temperatures were at 33 degrees celsius and her bans (immature white blood cells)were up. So they thought that she might be septic (have a blood infection). After 3 days in the hospital, the only thing she tested positive for was rhinovirus (the common cold).
3 days after discharge we followed up with her pediatrician. She had another ear infection. He prescribed more antibiotics.
On Sunday she still had a junky cough. It had gotten better, but not all of the way. She had been on antibiotics for 9 days, so she should have gotten better. At church she was shivering (which is her sign that she wants to go to bed). So I skipped Sacrament and took her home.
Just for fun I decided to take her temperature and check her sats. Her temp was 83 degrees farenheit. Her O2 was fine. Her heart-rate was dipping into the 40's but mainly hanging out in the low 60's/high 50's.
I threw about 5 blankets on her and pointed a space heater right at her. After about 20 minutes her temp was 85 degrees farenheit.
From 2 weeks earlier when they were worried about her temp I decided I better take her to the ER. SO I prayed to know whether to take her to Ogden Regional or Primary's.
I drove her to Primary's. When we got here they tried taking her temp and it wouldn't register on their thermometers. They tried ear, then armpit, then mouth, then rectal. Finally they got a temp of 31.1 degrees c. It was not even on their conversion cart it was so cold.
They warmed her up with this blanket that is like an air hockey table. The blanket is hooked up to a machine that blows warm air. Then the bottom of the blanket (next to your body) has holes in it. Hot air blows onto your body.
THey gave her heated IV fluids.
They did blood, urine, snot and spinal fluid (drawn from her shunt)tests. Everything so far is clean.
Her white blood cells are at the low end of normal. And her platelettes are also at the low end of normal.
After being in the ER for a few hours, she started having increased siezures. SO they gave her a dose of adavan. THen she still had a seizure so they gave her another dose of adavan. It totally knocked her out all night. They were worried she might be going static (non-stop seizures).
They got her temp up to 36.8. (37 is normal)
During the night her blood pressures were really bad. The 2 numbers were far apart.
This morning she has been wide awake and neurologically back to herself. SHe has needed a little blow-by O2 here and there. But really she has been fine. She still has her junky cough.
Her blood pressure has gotten back to normal and she has maintained her body temp.
They have sent in neurosurgery, neurology to consult.
They have sent off thyroid and cortisol tests to see if that is why her temp dropped so low. COrtisol kicks in to help your body deal with stress.
All blood, urine, spinal fluid are clean
Snot showed Rhinovirus (it can shed for a long time).
THe thyroid and cortisol tests were weird. SO they are going to do them again tomorrow.
Anyway, she's really doing well. But we would like an answer so we can avoid it in the future.
Low temps are more dangerous than high temps. THe Dr. on the floor said he had never seen a temp so low.
Tuesday, January 5, 2010
Home
Yea!!! We're home. Just a quick trip this time. We went in Sun night and came home Tues afternoon.
She is still needing a scosh (spell check---don't laugh---you try spelling it) of O2. I haven't suctioned her since we left at 2 PM. But will do it before bed.
She has been awake since we got home and doing great. She is very happy to be home.
The only thing she ended up testing positive for was rhinovirus (spell check again)which is just a common cold.
Her platelets are low, so we will go into the Dr. on Fri and have him recheck them.
Otherwise doing great.
On the way home from the hospital we swung by Shriners Hospital and got her second Serial cast on her Right arm. THey are putting casts on to stretch out her muscles which are starting to develop contractures. This past week she gained 25 degrees!!!!! THat is a lot. The OT thinks that we will only need this cast and then we will be able to put her in a splint instead. We will not regain full extention, but it will be pretty good. Last week she was cast at 120 degrees and this week it is 145 degrees. It is quite painful. THink of getting your braces tightened or doing a pilates move for a week straight.
She is still needing a scosh (spell check---don't laugh---you try spelling it) of O2. I haven't suctioned her since we left at 2 PM. But will do it before bed.
She has been awake since we got home and doing great. She is very happy to be home.
The only thing she ended up testing positive for was rhinovirus (spell check again)which is just a common cold.
Her platelets are low, so we will go into the Dr. on Fri and have him recheck them.
Otherwise doing great.
On the way home from the hospital we swung by Shriners Hospital and got her second Serial cast on her Right arm. THey are putting casts on to stretch out her muscles which are starting to develop contractures. This past week she gained 25 degrees!!!!! THat is a lot. The OT thinks that we will only need this cast and then we will be able to put her in a splint instead. We will not regain full extention, but it will be pretty good. Last week she was cast at 120 degrees and this week it is 145 degrees. It is quite painful. THink of getting your braces tightened or doing a pilates move for a week straight.
Monday, January 4, 2010
Awake
Today she has been awake. We moved to Medical (out of ICU) about 3 PM. All tests (blood, urine, x-ray) look good. She has needed a tiny bit of O2 this afternoon after moving to medical (I think it is because they are suctioning her as well. I think I'll just do it myself). If nothing grows from her blood cultures tomorrow morning then they said we can come home tomorrow afternoon.
We're Baaa..ck
A few weeks ago (maybe 2) I took her to the Dr. for upper airway congestion. He sent us home saying it was just a cold.
On Wed I took her back in to the Dr. because she still had upper airway congestion. He saw a lump and an ear infection in her left ear. We went home and started augmentin that night.
Sat and Sun I was sucking out TONS and TONS of stuff from her. It seemed like it was in her throat, not her nose. (but I was going through her nose to get to her throat). She just didn't seem to be getting better. Usually the antibiotics kick in pretty fast and she starts feeling better. But I thought she was actually doing worse.
We debated about maybe all the gunk was actually doing better because it was breaking up and clearing out. But I decided to take her to instacare on Sunday anyway. Also on Sat night the gunk I was sucking was foamy not snotty. With her previous pnemonia her snot was foamy also.
At instacare they did x-rays and found a slight pnemonia. Just a little effusion (or is it diffusion?) around the right lung. The Dr. said he would write us a prescription and we could go home or if we were worried then we could go down to primary's. We opted to go to Primary's.
The Dr. in the ER was a jerk. He acted like "why are you here?" He said the pnemonia was so slight that he wasn't sure why we had come to the ER. He still ran blood, urine tests.
Her temp was super low 33 int he ER. THey gave her warm IV fluids (that was pretty cool) and piled on the warm blankets. It brought up her temp by about 1 degree.
Her blood came back a little off. They were worried that maybe she was starting to get a bacterial blood infection.
If she only had the pnemonia then they would have sent us home. But with the blood work they decided to admit us. Since it was late SUnday night they put us in PICU because of her bi-pap at night. The floor is not great at handling it, especially on the weekend and late at night. The other reason for putting her in ICU was her potential for things to go really bad during the night.
They sucked a ton of stuff out of her during the night. This morning she is awake, which she has been really sleepy for a few days now. She felt VERY hot to me today. But they said her temp was only 36. (38 is normal) (35-36 is her normal).
The plan is to give her IV antibiotics and go home in a few days. Here's hoping.
On Wed I took her back in to the Dr. because she still had upper airway congestion. He saw a lump and an ear infection in her left ear. We went home and started augmentin that night.
Sat and Sun I was sucking out TONS and TONS of stuff from her. It seemed like it was in her throat, not her nose. (but I was going through her nose to get to her throat). She just didn't seem to be getting better. Usually the antibiotics kick in pretty fast and she starts feeling better. But I thought she was actually doing worse.
We debated about maybe all the gunk was actually doing better because it was breaking up and clearing out. But I decided to take her to instacare on Sunday anyway. Also on Sat night the gunk I was sucking was foamy not snotty. With her previous pnemonia her snot was foamy also.
At instacare they did x-rays and found a slight pnemonia. Just a little effusion (or is it diffusion?) around the right lung. The Dr. said he would write us a prescription and we could go home or if we were worried then we could go down to primary's. We opted to go to Primary's.
The Dr. in the ER was a jerk. He acted like "why are you here?" He said the pnemonia was so slight that he wasn't sure why we had come to the ER. He still ran blood, urine tests.
Her temp was super low 33 int he ER. THey gave her warm IV fluids (that was pretty cool) and piled on the warm blankets. It brought up her temp by about 1 degree.
Her blood came back a little off. They were worried that maybe she was starting to get a bacterial blood infection.
If she only had the pnemonia then they would have sent us home. But with the blood work they decided to admit us. Since it was late SUnday night they put us in PICU because of her bi-pap at night. The floor is not great at handling it, especially on the weekend and late at night. The other reason for putting her in ICU was her potential for things to go really bad during the night.
They sucked a ton of stuff out of her during the night. This morning she is awake, which she has been really sleepy for a few days now. She felt VERY hot to me today. But they said her temp was only 36. (38 is normal) (35-36 is her normal).
The plan is to give her IV antibiotics and go home in a few days. Here's hoping.
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