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.
Thursday, January 21, 2010
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).
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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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