"So..... sleepy...can't.....keep....eyes...open."
That's what Ellie would be saying today if she could verbalize words.
She was awake this morning for maybe 1/2 an hour and she was wide awake and smiling. Since then, she will wake up for maybe 20 seconds, smile and go back to sleep.
If you know Ellie, you know that she doesn't smile very frequently. I have seen her smile more in the last few days than I can remember in a long, long time all added together.
The smiling could be a new kind of seizure. I don't think so, but it could.
She had no desats last night. Truly awesome.
So Thurs morn we started new seizure med (Onfi). Thurs and Fri nights no desats. Sat night 1 desat about 10:30 PM. Sun night no desats. Previous to this she was desatting 1-5 times per night, every night.
She is not acting sick...just sleepy. I am assuming it is the new seizure med. But I think she likes it, because she is soooo smiley. I love the smiles, but hate the sleepiness. It's ridiculous, she is like a smiley zombie.
I have left a msg for the neurologist to see if #1) we can lower the dose to 1/4 tablet instead of 1/2 twice a day (actually we were supposed to do 1/2 tablet for a week and then increase to a full tablet) or #2) give only 1/4 or 1/2 tablet at night and skip the morning dose. Maybe we could even get by without a sleeping pill.
The residents spoke with the neurologist on call while we were inpatient and asked if the onfi could be working so quickly. They said some effects could be seen immediately, but the full effect wouldn't be seen for a few weeks.
If the sleepiness is not the new seizure med, then hopefully she is still getting over a cold...otherwise there is something drastically wrong. Because she is sooooooooooooooooooooooo sleepy.
Sometimes you can get used to the med and then you won't be as sleepy. But as it is now...she keeps dropping her sats because she is so sleepy, so I have to have her hooked up to a pulse ox to monitor her and oxygen because she keeps dropping. This means I can't send her to school until she can maintain her sats (plus hopefully be awake for at least part of the day).
Well that's about it so far for today...sleepy and dropping sats (but nothing that a little O2 can't take care of).
Monday, April 30, 2012
Sunday, April 29, 2012
Why are we home again?
We got discharged about 2:30-3 PM today (Sunday). When we were discussing being discharged she was wide awake and had been satting really well all day.
Once we left she fell asleep and was dropping her sats. She slept the majority of the rest of the day and was constantly dropping her sats. She had to be on O2 the rest of the day basically.
While awake she was smiling and alert. She was a lot more smiley than I have seen her in a long time.
They never really found anything. They think the discharge must just be part of the growing up/estrogen. And she is just getting over a cold or something.
So the good news is...we're home. The bad news is...she is not better.
The whole time in the hospital I was thinking...why are we here? She's not that sick.
Now that we are home, I'm thinking...she's sick...why aren't we in the hospital.
I think she'll be fine with a few more days under the watchful eye of Nurse Mikael, but gee...it's easier in the hospital where people will change briefs, do meds, repostition, make formula...etc, etc...I do have a new respite worker thankfully...so that will be a big help. Hopefully the other kids will behave and the house won't get too messy either.
Once we left she fell asleep and was dropping her sats. She slept the majority of the rest of the day and was constantly dropping her sats. She had to be on O2 the rest of the day basically.
While awake she was smiling and alert. She was a lot more smiley than I have seen her in a long time.
They never really found anything. They think the discharge must just be part of the growing up/estrogen. And she is just getting over a cold or something.
So the good news is...we're home. The bad news is...she is not better.
The whole time in the hospital I was thinking...why are we here? She's not that sick.
Now that we are home, I'm thinking...she's sick...why aren't we in the hospital.
I think she'll be fine with a few more days under the watchful eye of Nurse Mikael, but gee...it's easier in the hospital where people will change briefs, do meds, repostition, make formula...etc, etc...I do have a new respite worker thankfully...so that will be a big help. Hopefully the other kids will behave and the house won't get too messy either.
1 desat
So last night about 11 PM she had 1 of her no breathing/desat episodes (like she does at home). It is amazing how much scarier it is when I am awake rather then groggy. It lasted a minute or two. She dropped into the 70's.
Also last night her heart-rate was dropping into the high 40's (that's low). She occasionally does this at home. We warm her up when her heartrate is low. So that's what I told/asked them to do.
The problem is Primary's has this new "safety" policy that they had to lower all of the thermostats on the blanket warmers. So by the time you get them to the patients room, the blankets are no longer warm (hardly at all).
And apparently the floor does not have a bair hugger (think of an upside air hockey table in blanket form. The blanket has holes pointing toward your body. The device blows warm air through the blanket and the warm air blows onto your body through the holes.) They called the ED (same as ER) and asked to borrow theirs...they were really apprehensive about loaning it out. So they called the PICU. PICU lent it to us, but only for a few hours, they they took it back.
Anyway, we warmed her up until her heart rate was in the high 60's then turned it off and her heart rate was fine the rest of the night. We do this some thing at home. If her heart rate is in the 50's when we put her to bed, we turn on her electric blanket for a half an hour. After the half hour we check on her and if it is still in the 50's we turn it on for another half hour. Usually by then she is warmed up for the night and she will do OK. (She also has a space heater going).
I am definitely writing to the suggestion box about the bair hugger and the blanket warmer...I do not find the current state of affairs acceptable.
I really do not know if they will keep us or discharge us. They don't like the desats and neither do I. But since they happen at home...I don't know that there is anything they can do. I really thought that the new seizure med was working (getting rid of the desats), and maybe it is...but it was a rough night. But every night at home is rough, so it wasn't any different except that I wasn't in my own bed. At least the new beds here are better than the old ones. These new ones are more like a futon couch instead of a chair that unfolds.
Also last night her heart-rate was dropping into the high 40's (that's low). She occasionally does this at home. We warm her up when her heartrate is low. So that's what I told/asked them to do.
The problem is Primary's has this new "safety" policy that they had to lower all of the thermostats on the blanket warmers. So by the time you get them to the patients room, the blankets are no longer warm (hardly at all).
And apparently the floor does not have a bair hugger (think of an upside air hockey table in blanket form. The blanket has holes pointing toward your body. The device blows warm air through the blanket and the warm air blows onto your body through the holes.) They called the ED (same as ER) and asked to borrow theirs...they were really apprehensive about loaning it out. So they called the PICU. PICU lent it to us, but only for a few hours, they they took it back.
Anyway, we warmed her up until her heart rate was in the high 60's then turned it off and her heart rate was fine the rest of the night. We do this some thing at home. If her heart rate is in the 50's when we put her to bed, we turn on her electric blanket for a half an hour. After the half hour we check on her and if it is still in the 50's we turn it on for another half hour. Usually by then she is warmed up for the night and she will do OK. (She also has a space heater going).
I am definitely writing to the suggestion box about the bair hugger and the blanket warmer...I do not find the current state of affairs acceptable.
I really do not know if they will keep us or discharge us. They don't like the desats and neither do I. But since they happen at home...I don't know that there is anything they can do. I really thought that the new seizure med was working (getting rid of the desats), and maybe it is...but it was a rough night. But every night at home is rough, so it wasn't any different except that I wasn't in my own bed. At least the new beds here are better than the old ones. These new ones are more like a futon couch instead of a chair that unfolds.
Saturday, April 28, 2012
On again, off again
She has been asleep on and off today. While asleep she will drop her sats and turn blue. So we decided for now she has to wear her mask when she is asleep.
Here is a comparison of yesterday versus today..
Yesterday:
No pee, low body temp (92 F), Asleep in morning when I gave her ritalin, but asleep the entire day after that, sats great all day.
Today:
Some pee, some poop, slightly low body temp (94 F) (not bad), awake and asleep off and on throughout the day, dropping sats while asleep.
I like the awake off and on, but not the dropping sats.
I still think she is doing well.
Neurosurgery came by and they said they think the ventricles are actually a little smaller. They don't think any adjustments need to be made (or surgery). Jason asked if the smaller ventricles could be causing problems. They said no. Neurosurgery does not think that her hydrocephalus has anything to do with her sleepiness.
Here is a comparison of yesterday versus today..
Yesterday:
No pee, low body temp (92 F), Asleep in morning when I gave her ritalin, but asleep the entire day after that, sats great all day.
Today:
Some pee, some poop, slightly low body temp (94 F) (not bad), awake and asleep off and on throughout the day, dropping sats while asleep.
I like the awake off and on, but not the dropping sats.
I still think she is doing well.
Neurosurgery came by and they said they think the ventricles are actually a little smaller. They don't think any adjustments need to be made (or surgery). Jason asked if the smaller ventricles could be causing problems. They said no. Neurosurgery does not think that her hydrocephalus has anything to do with her sleepiness.
Back asleep.
She was awake for maybe 3 hours. Now she's back asleep. While asleep she has dropped her sats a few times.
The Dr.'s just rounded on her. They thought she is doing well. They think her discharge is vaginal and probably just due to the estrogen. They think she is just getting over a cold.
Now the bad news...they want to keep us here at least 1 more day. When they told me her brain scans (hydrocephalus) looked the same...apparently that was just the Dr.'s looking at them, not the radiologist. When the radiologist looked at them, they thought the shunt track is intact, but her ventricles (in her brain) look slightly enlarged.
So now they are going to send in neurosurgery to consult.
At first I was like...oh no...not surgery.
But then I realized that her shunt is programmable. So hopefully, if they think she needs to drain more, then they can just reprogram her shunt by the radio frequencies.
I don't know if they will or not. I think she just has sleepy days. I don't necessarily think it's the shunt...but who knows?
Maybe you just have to up the rate it is draining as they get bigger...I'm not sure.
For those of you unfamiliar with these terms:
We all have ventricles in our brain (fluid filled areas). This is called hydrocephalus. If we didn't have them we would get knocked out every time we bump our head. They act as a cushion. Our body produces this fluid (spinal fluid) and then reabsorbs the fluid. Ellie's ventricles are quite enlarged. Enlarged ventricles are not the problem, it is when they show pressure. So it is like an empty balloon versus a water balloon. The empty balloon is no problem, the water balloon is a problem because it has pressure pushing on the brain. Your ventricles and fluid are like a faucet dripping water into the sink and drain. If the flow of water in can match the flow of water out you are fine. If it can't drain faster than the water is coming, that is when you get problems. The problem could lie with the brain producing too much fluid or that it can't drain it fast enough. Either way it is a problem and you have to get the fluid to drain. So they place a 1-way valve in her head. They open up the skin, drill through the skull and brain matter and place the 1-way valve into the ventricle. The 1-way valve is called a shunt. It only allows fluid to travel out of the brain, but not back. It allows fluid out when there is pressure, or if it is a programmable shunt, then it drains at a set rate. The shunt is connected to tubing which runs under her skin into the cavity around the heart or the abdomen. Ellie's goes to her abdomen. Not into her stomach, just the area around her stomach. The body reabsorbs the fluid. This is called a VP shunt. The tubing is the shunt track. You cannot see the tubing externally. You can slightly feel the shunt on her right side of her head. Shunts can be very tricky. If you can get them to last for a year or longer then you are usually in the clear, you won't have to replace them for a long time. But there are many, many shunts that have to be replaced every month to several times a year. We have been very blessed in that Ellie's have worked well. She had her first shunt placed when she was 10 months old (in 2003). Then she had 1 revision in Fall of 2007. We thought her sleepiness might be due to her shunt. When they went in and replaced the shunt, there was not a lot of pressure, so it probably did not need to be replaced, however...some of the tubing was cracked, so the neurosurgeon said it was good we replaced it since it would have broken. Plus her first shunt was not programmable, but with the second one we chose to use a programmable one that you can program with radio frequency externally, telling the shunt how much to drain.
The Dr.'s just rounded on her. They thought she is doing well. They think her discharge is vaginal and probably just due to the estrogen. They think she is just getting over a cold.
Now the bad news...they want to keep us here at least 1 more day. When they told me her brain scans (hydrocephalus) looked the same...apparently that was just the Dr.'s looking at them, not the radiologist. When the radiologist looked at them, they thought the shunt track is intact, but her ventricles (in her brain) look slightly enlarged.
So now they are going to send in neurosurgery to consult.
At first I was like...oh no...not surgery.
But then I realized that her shunt is programmable. So hopefully, if they think she needs to drain more, then they can just reprogram her shunt by the radio frequencies.
I don't know if they will or not. I think she just has sleepy days. I don't necessarily think it's the shunt...but who knows?
Maybe you just have to up the rate it is draining as they get bigger...I'm not sure.
For those of you unfamiliar with these terms:
We all have ventricles in our brain (fluid filled areas). This is called hydrocephalus. If we didn't have them we would get knocked out every time we bump our head. They act as a cushion. Our body produces this fluid (spinal fluid) and then reabsorbs the fluid. Ellie's ventricles are quite enlarged. Enlarged ventricles are not the problem, it is when they show pressure. So it is like an empty balloon versus a water balloon. The empty balloon is no problem, the water balloon is a problem because it has pressure pushing on the brain. Your ventricles and fluid are like a faucet dripping water into the sink and drain. If the flow of water in can match the flow of water out you are fine. If it can't drain faster than the water is coming, that is when you get problems. The problem could lie with the brain producing too much fluid or that it can't drain it fast enough. Either way it is a problem and you have to get the fluid to drain. So they place a 1-way valve in her head. They open up the skin, drill through the skull and brain matter and place the 1-way valve into the ventricle. The 1-way valve is called a shunt. It only allows fluid to travel out of the brain, but not back. It allows fluid out when there is pressure, or if it is a programmable shunt, then it drains at a set rate. The shunt is connected to tubing which runs under her skin into the cavity around the heart or the abdomen. Ellie's goes to her abdomen. Not into her stomach, just the area around her stomach. The body reabsorbs the fluid. This is called a VP shunt. The tubing is the shunt track. You cannot see the tubing externally. You can slightly feel the shunt on her right side of her head. Shunts can be very tricky. If you can get them to last for a year or longer then you are usually in the clear, you won't have to replace them for a long time. But there are many, many shunts that have to be replaced every month to several times a year. We have been very blessed in that Ellie's have worked well. She had her first shunt placed when she was 10 months old (in 2003). Then she had 1 revision in Fall of 2007. We thought her sleepiness might be due to her shunt. When they went in and replaced the shunt, there was not a lot of pressure, so it probably did not need to be replaced, however...some of the tubing was cracked, so the neurosurgeon said it was good we replaced it since it would have broken. Plus her first shunt was not programmable, but with the second one we chose to use a programmable one that you can program with radio frequency externally, telling the shunt how much to drain.
Poop report
No more worries in this department.
She is still awake. Doing super well today. Smiling and vocalizing happily.
No wet diapers today and no discharge.
They are going to do a 2 day course of diflucan (yeast treatment). The samples have not shown any yeast, but...just in case.
All tests have been completely normal except for slightly off liver results and her CRP (acute illnesses) was slightly up and her ESR (long term illnesses) was slightly up.
I really can't think of a reason they wouldn't discharge us today or at the latest tomorrow. Unless the no urine becomes a bigger problem through today.
Suggestion to special needs parents: tape your door latches shut during the night so it is not so noisy when they come in during the night. I also put a sign on the doorknob that says "Come in quietly, we are sleeping".
She is still awake. Doing super well today. Smiling and vocalizing happily.
No wet diapers today and no discharge.
They are going to do a 2 day course of diflucan (yeast treatment). The samples have not shown any yeast, but...just in case.
All tests have been completely normal except for slightly off liver results and her CRP (acute illnesses) was slightly up and her ESR (long term illnesses) was slightly up.
I really can't think of a reason they wouldn't discharge us today or at the latest tomorrow. Unless the no urine becomes a bigger problem through today.
Suggestion to special needs parents: tape your door latches shut during the night so it is not so noisy when they come in during the night. I also put a sign on the doorknob that says "Come in quietly, we are sleeping".
She's awake
Ellie awake this morning which is more than I can say she has been for the last 2 weeks.
She has a small wet brief and small discharge. No poops yet.
I think she is doing really good. Perhaps if I had waited one more day, we wouldn't have had to come in to the hospital?!?!?!
She has a small wet brief and small discharge. No poops yet.
I think she is doing really good. Perhaps if I had waited one more day, we wouldn't have had to come in to the hospital?!?!?!
Friday during the night
She had no desaturations last night. It seems like a highly big coincidence that we start a new seizure med and now she is having no desaturations. That would be awesome if they are gone...I will get A LOT more sleep every night. Here's hoping.
A few low heart-rates last night (high 40's). She has gone that low at home...but not for a while now. Usually her heart-rate is low because her temp is low. They have been doing ear temps and have said they are at her baseline. I always do rectal temps (I just didn't want them doing them during the night). I think I'll ask them to do one when she wakes up.
A few low heart-rates last night (high 40's). She has gone that low at home...but not for a while now. Usually her heart-rate is low because her temp is low. They have been doing ear temps and have said they are at her baseline. I always do rectal temps (I just didn't want them doing them during the night). I think I'll ask them to do one when she wakes up.
Friday, April 27, 2012
In a room
So we finally made it to a room at about 5:30.
Today was unusual compared to the last 2 weeks.
The last 2 weeks:
sleepy, decreased urine output, decreased oxygen (probably due to sleepiness), increased seizures, high temps, low temps, high heart rates, upper airway congestion (only last week), no poops for the last 3 days, discharge in her diaper
Today:
sleepy, decreased urine output (she normally holds her urine all night long and then has 2 or 3 really large wet diapers in the morning...this is when she has the discharge...that's why they thought it might be sludge from her kidneys...This morning she had not even 1 wet diaper...finally at 1 PM she had a medium sized wet diaper and when they cathed her she had a large wet diaper, NO decreased oxygen (even though sleeping she had great sats), maybe only 2 seizures this morning, NO high temps, YES low temps (92.1 in the ER), NO high heart rate, 1 medium poop (I gave her an enema and would have expected a larger outcome), NO discharge today.
I guess the things that are weird to me are...sats were great (maybe she was still just getting over a cold?!?!?!), No discharge (I did put vagisil on her once yesterday), No seizures today (does that mean she's getting better?), No wet diapers this morning and only 2 the whole day, only a medium poop with an enema and lactulose and not having pooped for 3 days (Sudafed D can cause constipation...according to Dr. Jason Stansfield who looked it up on the web-ernet...and I gave her Sudafed D all last week).
Last night she none of her desaturation episodes. The 3 day EEG showed that some but not all of her night-time desats were seizures. We started her new seizure med. Did I already talk about this? I don't remember. It has been used in Europe and Canada for 10 years with great success. It works well in people who haven't found success on traditional seizure meds. It works differently in the brain. It has recently been FDA approved. The only side-effect is sleepiness, but it is not as bad as with other seizure meds. None of the Dr.'s here have ever heard of it. Anyway, it might be coincidence. But we started this seizure med yesterday and last night was the first night in months and months and months that she hasn't had a desaturation episode. Jason and I both woke up this morning and asked each other..."Did you get up with her last night?" And neither of us did.
This afternoon, while the Dr. was here, she did have one of her night-time desats. I think it was good for the Dr. to see. They are a lot scarier in the daytime when you can actually see her turning blue and you are awake enough to be scared. During the night, you just kind of muddle through
Anyway...tonight about 9 I was telling the nurse, "I don't think she will need her sleeping pill tonight because she is so sleepy." All of a sudden Ellie woke up and decided to be alert. Unfortunately it was bedtime, so we had to give her a sleeping pill to put her back to sleep. She got to stay awake for an hour or so.
I actually think she is doing really well. I wouldn't be surprised if we get to come home within a few days...as soon as the cultures and tests get back. We'll see.
So far the CT scan of head (hydrocephalus--water in the brain) looks unchanged according to the Dr. All blood work, urine and discharge tests look normal.
So far, no answers.
Time for bed.
Today was unusual compared to the last 2 weeks.
The last 2 weeks:
sleepy, decreased urine output, decreased oxygen (probably due to sleepiness), increased seizures, high temps, low temps, high heart rates, upper airway congestion (only last week), no poops for the last 3 days, discharge in her diaper
Today:
sleepy, decreased urine output (she normally holds her urine all night long and then has 2 or 3 really large wet diapers in the morning...this is when she has the discharge...that's why they thought it might be sludge from her kidneys...This morning she had not even 1 wet diaper...finally at 1 PM she had a medium sized wet diaper and when they cathed her she had a large wet diaper, NO decreased oxygen (even though sleeping she had great sats), maybe only 2 seizures this morning, NO high temps, YES low temps (92.1 in the ER), NO high heart rate, 1 medium poop (I gave her an enema and would have expected a larger outcome), NO discharge today.
I guess the things that are weird to me are...sats were great (maybe she was still just getting over a cold?!?!?!), No discharge (I did put vagisil on her once yesterday), No seizures today (does that mean she's getting better?), No wet diapers this morning and only 2 the whole day, only a medium poop with an enema and lactulose and not having pooped for 3 days (Sudafed D can cause constipation...according to Dr. Jason Stansfield who looked it up on the web-ernet...and I gave her Sudafed D all last week).
Last night she none of her desaturation episodes. The 3 day EEG showed that some but not all of her night-time desats were seizures. We started her new seizure med. Did I already talk about this? I don't remember. It has been used in Europe and Canada for 10 years with great success. It works well in people who haven't found success on traditional seizure meds. It works differently in the brain. It has recently been FDA approved. The only side-effect is sleepiness, but it is not as bad as with other seizure meds. None of the Dr.'s here have ever heard of it. Anyway, it might be coincidence. But we started this seizure med yesterday and last night was the first night in months and months and months that she hasn't had a desaturation episode. Jason and I both woke up this morning and asked each other..."Did you get up with her last night?" And neither of us did.
This afternoon, while the Dr. was here, she did have one of her night-time desats. I think it was good for the Dr. to see. They are a lot scarier in the daytime when you can actually see her turning blue and you are awake enough to be scared. During the night, you just kind of muddle through
Anyway...tonight about 9 I was telling the nurse, "I don't think she will need her sleeping pill tonight because she is so sleepy." All of a sudden Ellie woke up and decided to be alert. Unfortunately it was bedtime, so we had to give her a sleeping pill to put her back to sleep. She got to stay awake for an hour or so.
I actually think she is doing really well. I wouldn't be surprised if we get to come home within a few days...as soon as the cultures and tests get back. We'll see.
So far the CT scan of head (hydrocephalus--water in the brain) looks unchanged according to the Dr. All blood work, urine and discharge tests look normal.
So far, no answers.
Time for bed.
Efficiency expert wanted
Could someone please hire an efficiency expert to evaluate why it takes so stinkin' long to get out of the ER? Seriously. I am going batty. The Dr. told us from the beginning we were going to be admitted. So do it already.
I am afraid they will not find anything and then I will get the speech about "maybe her brain just can't keep up with her anymore." I hate that speech. It comes out at least once every hospital stay.
Ahhhhh..... At least my Dad is going to bring me dinner! Yea!
I am afraid they will not find anything and then I will get the speech about "maybe her brain just can't keep up with her anymore." I hate that speech. It comes out at least once every hospital stay.
Ahhhhh..... At least my Dad is going to bring me dinner! Yea!
For Corrie
I'm sorry, there is a lot going on...there is a lot to remember and it's hard to get it all out onto the blog in a coherant manner. Anyway...
They are doing a KUB when they do the abdomen x-rays. BUt it will only show large kidney stones if there are any. They came and took a urine sample yesterday (Thurs) at my house to look at kidney function.
And on Wed they came and took a disharge sample to culture.
They also took more urine here at PCMC.
The preliminary results on the discharge and urine from Wed and Thur do not show anything. But they are not final.
I REALLY dislike it when they can't find anything. And you KNOW without a shadow of a doubt something is wrong. I'm still holding out hope that the tests will turn something up...and hopefully something easily treatable. Is that too much to ask? Probably!
They are doing a KUB when they do the abdomen x-rays. BUt it will only show large kidney stones if there are any. They came and took a urine sample yesterday (Thurs) at my house to look at kidney function.
And on Wed they came and took a disharge sample to culture.
They also took more urine here at PCMC.
The preliminary results on the discharge and urine from Wed and Thur do not show anything. But they are not final.
I REALLY dislike it when they can't find anything. And you KNOW without a shadow of a doubt something is wrong. I'm still holding out hope that the tests will turn something up...and hopefully something easily treatable. Is that too much to ask? Probably!
You'll never guess where we are...
Okay, so you could probably guess within the first 3 or 4 guesses...
We're at the Emergency Room at Primary Children's Hospital. Yippee...NOT! (Remember when we used to say that back in Jr. High?)
This morning she didn't have a wet brief. (She usually has 2-3 really large ones in the morning, because she holds it all night). Also her bum (the front part) was raw and bleeding. WEIRD!
She was completely zonked. I tried messing with her to perk her up and NOTHING. I gave her ritalin to wake her up.
I called to get her in to the pediatrician. He only had appointments this afternoon. I had dental appointments for the entire family this afternoon. I asked to leave him a msg to fit me in somewhere in the morning. I also left a msg with the lab results lady at the pediatricians office.
She was not doing well this morning. No improvements and actually a little worse.
Also she hadn't pooped for 3 days...today would make day 4. So I gave her an enema and upped her lactulose. She had a medium sized bowl movement, but so far that is all.
Her pediatrician didn't get in until 9. (I left the msgs about 7:30). I know I was being impatient, but I called back at 9:10. They said he was completely booked up, but that I could see another Dr. there. I had already gone in and seen Dr. Gabe (her regular pediatrician) on Tues. I really, really didn't want to explain all of the stuff again. I asked if Dr. Gabreielson had said he couldn't fit me in (thinking maybe she hadn't actually asked him) because I think he would fit us in. She said that is what he said. (I still don't believe her). Anyway, I responded with "that is really disappointing". I said I would probably have to go to the Emergency Room then, rather than see another Dr. That got her attention. She wanted to know what was going on, so I told her a lot of the stuff and ended up crying in the meantime. She said she would go back and talk to Dr. Gabrielson.
I called Jason and told him what was going on. Sleepiness, low O2, discharge in brief, no urine, no stools, low temp last night, etc...We decided it would be better to drive her down her to Primary's anyway. So I loaded up and here we are. The funny thing was while driving here, she was completely wide-eyed and awake. I thought they are going to think I'm crazy saying she is incredibly sleepy. (It was the ritalin that woke her up).
They got us back pretty quickly to a room. Her rectal temp was 92.1 F COLD again.
The resident came in and I tried to think of the nicest way to say I don't want to tell him that I didn't want to tell him the story and them retell it to the Dr. Ellie is a complicated kid and this situation is also really complicated. So I said something like, "Are you going to be the Dr. in charge, or is another Dr. going to come in later?" He said there would be another Dr. coming in later. So I asked "Can I just wait for them to come in also, so I only have to say everything once?" He said "sure". I asked the nurse (who was in the room at the time) if that was rude and he said "No".
Once the Dr. and the resident were both together in the room I proceeded to explain what was going on. The Dr. kept interrupting. Not to ask questions or anything, but to start jumping to conclusions. I still hadn't finished and she said, I think we are going to have to admit her, this is very complicated and is going to take a lot of tests and time to figure out. Plus we want her more back to her baseline before you go home.
I said that was fine.
So far they have done CT on head (for shunt), rays of chest (for pnemonia---they can't hear any, but just to be safe), and abdomen (to see if the shunt line is intact and to see if she has any bowel blockage), urine sample, blood samples and we are warming her up with heated IV fluids and the baer hugger.
Her white counts are only slightly elevated. Any other markers of a raging infection are not there. They haven't seen anything in the blood that looks really bad. I have not heard on any other tests yet.
Just waiting for test results and to go up to a room. I am pretty sure we will be on the floor, not in ICU.
She has had 2 wet diapers since being here. One medium, one extra large. So that's good I think. She is back to being sleepy now. She was awake from about 10:30-2:00. Her sats and heartrate are looking alright even with being asleep.
Well, that's what we're up to...remember, we love comments!
We're at the Emergency Room at Primary Children's Hospital. Yippee...NOT! (Remember when we used to say that back in Jr. High?)
This morning she didn't have a wet brief. (She usually has 2-3 really large ones in the morning, because she holds it all night). Also her bum (the front part) was raw and bleeding. WEIRD!
She was completely zonked. I tried messing with her to perk her up and NOTHING. I gave her ritalin to wake her up.
I called to get her in to the pediatrician. He only had appointments this afternoon. I had dental appointments for the entire family this afternoon. I asked to leave him a msg to fit me in somewhere in the morning. I also left a msg with the lab results lady at the pediatricians office.
She was not doing well this morning. No improvements and actually a little worse.
Also she hadn't pooped for 3 days...today would make day 4. So I gave her an enema and upped her lactulose. She had a medium sized bowl movement, but so far that is all.
Her pediatrician didn't get in until 9. (I left the msgs about 7:30). I know I was being impatient, but I called back at 9:10. They said he was completely booked up, but that I could see another Dr. there. I had already gone in and seen Dr. Gabe (her regular pediatrician) on Tues. I really, really didn't want to explain all of the stuff again. I asked if Dr. Gabreielson had said he couldn't fit me in (thinking maybe she hadn't actually asked him) because I think he would fit us in. She said that is what he said. (I still don't believe her). Anyway, I responded with "that is really disappointing". I said I would probably have to go to the Emergency Room then, rather than see another Dr. That got her attention. She wanted to know what was going on, so I told her a lot of the stuff and ended up crying in the meantime. She said she would go back and talk to Dr. Gabrielson.
I called Jason and told him what was going on. Sleepiness, low O2, discharge in brief, no urine, no stools, low temp last night, etc...We decided it would be better to drive her down her to Primary's anyway. So I loaded up and here we are. The funny thing was while driving here, she was completely wide-eyed and awake. I thought they are going to think I'm crazy saying she is incredibly sleepy. (It was the ritalin that woke her up).
They got us back pretty quickly to a room. Her rectal temp was 92.1 F COLD again.
The resident came in and I tried to think of the nicest way to say I don't want to tell him that I didn't want to tell him the story and them retell it to the Dr. Ellie is a complicated kid and this situation is also really complicated. So I said something like, "Are you going to be the Dr. in charge, or is another Dr. going to come in later?" He said there would be another Dr. coming in later. So I asked "Can I just wait for them to come in also, so I only have to say everything once?" He said "sure". I asked the nurse (who was in the room at the time) if that was rude and he said "No".
Once the Dr. and the resident were both together in the room I proceeded to explain what was going on. The Dr. kept interrupting. Not to ask questions or anything, but to start jumping to conclusions. I still hadn't finished and she said, I think we are going to have to admit her, this is very complicated and is going to take a lot of tests and time to figure out. Plus we want her more back to her baseline before you go home.
I said that was fine.
So far they have done CT on head (for shunt), rays of chest (for pnemonia---they can't hear any, but just to be safe), and abdomen (to see if the shunt line is intact and to see if she has any bowel blockage), urine sample, blood samples and we are warming her up with heated IV fluids and the baer hugger.
Her white counts are only slightly elevated. Any other markers of a raging infection are not there. They haven't seen anything in the blood that looks really bad. I have not heard on any other tests yet.
Just waiting for test results and to go up to a room. I am pretty sure we will be on the floor, not in ICU.
She has had 2 wet diapers since being here. One medium, one extra large. So that's good I think. She is back to being sleepy now. She was awake from about 10:30-2:00. Her sats and heartrate are looking alright even with being asleep.
Well, that's what we're up to...remember, we love comments!
Thursday, April 26, 2012
Time to update
I haven't posted for a while...lot's has happened.
As far as the estrogen and "growing up" she has a few armpit hairs (very few) and last we checked (probably a month ago) she was up to 64 pounds. At that time that was up 4 pounds in 4 months. Yuck. But I have to keep telling myself it will be worth it in the end. And hopefully it will be.
Some other concerns I thought of before starting the estrogen were...#1) last time she went through a growth spurt is when she got contractures (really tight muscles that can't straighten out anymore). The rehab dr. said that when you go through a growth spurt the bone grows faster than the muscle can and so the muscles stay short and it leads to contractures. Gee...that would have been nice to know before so I could have been watching for it. So when thinking about doing the estrogen and knowing she was going to go through a growth spurt I talked to Rehab about it. They said yep, it could happen. #2) If fusing your growth plates would stop your ribcage from growing, would it affect her breathing. So I talked to Orthopedics about it. He didn't see a problem with it and thought anything that can keep her in the home and help to be able to take care of her was a good idea. #3) I had heard that when you go through puberty often your seizures get worse. So I talked to neurology about it. (Which by the way my neurologist has a daughter with CP and is DB and is similar to Ellie). He said often seizures do get worse at puberty. But thought anything that could help with her care was worth looking into. All the Dr.'s of course said it was our decision and wouldn't tell us that that was what we should do...but they all seemed supportive of it to me.
She is still having white discharge in her diaper. The assumption is that it is vaginal. But I asked the Special Care Dr. if it could be urinary and said that my friend's (thanks Corrie for the idea) son had been having white discharge and now has kidney stones. She thought it was possible because she usually only has the discharge in the morning and she holds her urine all night. So the sludge could be building up during the night and coming out in the morning. She wrote for some urine tests to be done. The Pediatrician wrote for the discharge to be cultured. I asked if we should see a urologist, they both said, not yet. Let's wait and see what the tests show.
The only way to get a urine sample first thing in the morning is to go to the ER with your script, or have a homecare nurse come in. I asked for a homecare nurse, because if I had to wake her up to go to the ER, then she would urinate on the way there and then we still wouldn't have our sample.
I waited and waited to hear from homecare. Then I went on vacation and it slipped from the front of my brain. Then I called and emailed and finally they called me back. She said she thought it had been done. Anyway, they came out yesterday morning and tried to straight cath her. First they couldn't find the right hole, then the cathedar was too big. So they came out again today and used a baby feeding tube to cath her because they didn't carry any smaller cathedars. Anyway it worked. We got a sample.
She has been having this clear or white (white right now) discharge for a while. I would say since January. We will treat her with antibiotics. It goes away for a few days and then it comes back. It doesn't really bother her, so I thought maybe it was just part of growing up. I haven't been quite as diligent as I perhaps could have been...Ahhhhh bygones...
So now we wait to see what grows out. Hopefully not "mixed flora". That is what they have said other times we have cultured the discharge. Mixed flora means normal body stuff. I want something to grow so we can treat it, have answers and be done.
It has been a rough 2 weeks. My respite worker quit. She was moving away and needed more hours and benefits. So all of those reasons combined meant she needed to quit. We loved her, (and still do), she was like part of the family. She had been with us for 2 1/2 years. That is a long time. The longest I ever had a respite worker before that was 6 months. Plus she was my tenant at my rental property I manage, so that meant that I had to find new renters (which I still haven't found anyone).
I hate training someone new. It takes a good 4-6 months to get someone really trained in everything and every possible scenario I can think of. And then they usually quit. It is a hard, physically demanding, gross, stinky job. It is rewarding. But hard. It is hard to convey all of the medical ins and outs to someone new, hard to teach them Ellie's way of communicating and how to read her body so they can take care of her and I feel comfortable leaving her overnight or for any extended period of time.
We did find a new respite worker right away. Which was great. And so the training began this week. I think she will be great. It just takes time.
Jason and myself were going on a trip to St. George. (Business for him, pleasure for me). Because our respite worker quit, we were unable to leave Ellie at home. Therefore she came with us. It was delightful. It is so easy to ignore Ellie and not do anything fun with her. Just take care of her needs. It was really fun to hang out with her and take her shopping and spoil her. That probably sounds really bad to those of you without kids with special needs. But hey, that's the way it is. I spend hours and hours and hours taking care of her needs that it doesn't leave much time/energy for the fun stuff. Plus with me going to school it has been crazy too. So it was a much needed vacation for both of us.
She was quite sleepy, and a little upper airway congestion while on the trip. And a few less pee-pee briefs. I was a little worried about her. I started giving her benadryl and sudafed D (you can give both at the same time---one drains the sinus' and one dries out the sinus'). Any time we give her Sudafed D she is awake that day. It is great. Sudafed D is found behind the counter at the pharmacy because it has the ingredient in it that they make meth with. The meds helped her breathe better and woke her up so we could have fun.
When we got home I tried to stop giving her the meds and she has just slept and slept and slept all day every day. On Tues morning her oxygen kept dipping to 85% so I kept her home and took her to the pediatrician. I was worried she might have pnemonia. He couldn't find anything wrong with her. So here are the conclusions we came to...
#1) her seizures are worse (possibly due to the puberty) and that is making her tired which in turn makes her oxygen drop.
#2) the discharge in her diaper is some kind of infection and because her defenses are down her seizures got worse. I think it's this one. Either she has a vaginal infection (yeast or otherwise). Or there is something going on with her kidneys that the discharge is actually urinary. And she might have had a cold along with this.
Ellie's seizures have been out of control. She was just having those weird episodes (possibly seizures) during the nights where her oxygen would drop to the mid 70's even though on bi-pap and oxygen. We ended up doing the 3 day in home EEG. The neurologist said some of the episodes were seizures and some were not. He recommended a new seizure med. It has been used in Europe for 10 years but was only recently FDA approved. It seems to work on people who other seizure meds haven't worked on (like Ellie) because it works in the brain differently. The only side-effect is lethargy. But even that is not as bad as with other seizure meds. We decided to try it. Because the waking up 1-5 times during the night for low oxygen due to seizures is not working for me anymore. One thing about the new med (when I read the package insert) is it can interact with antihistamines and cough and cold medicines. You have to talk to your Dr. or pharmacist before taking anything. That's a bummer...no more meth for Ellie (I'm kidding about the meth...you know that...right?). The med also helps with spacticity (tight muscles).
Today she went to Prosthetics and Orthotics (big way of saying brace people). We went to a new place. It is called Hanger Orthotics they are just off 53rd south in SLC. I really like them. I have always gotten all of her braces from Shriners. But the wheelchair ladies (Physical therapist and Occupational therapist) at IHC Homecare Wheelchair shop told me about Hanger and these softer body braces that they make. (Ellie wears a body brace for her scoliosis and to help with positioning since her torso is completely floppy). We were measured for it a few weeks ago and we got it today. It's not nearly as cute as the one from Shriners...but it is WAAAAAYYY softer. I think I'm going to like it alot. Today they cast her for some new arm splints that will be adjustable. This is important because when she gets the botox/phenol in her arms they are pretty loose, but over the next few months as the botox/phenol wears off they get tighter. I am excited for these also. We go back in a few weeks to get fitted for them.
When we got home I took her temp because school thought she was cold today. And lo and behold she was. She was at 92.5. I got to show my new respite worker what we do to warm her up. It took about 2 hours, but we got her up to 95.1. That is acceptable to me. It doesn't scare me anymore when her body temp drops, but it is kind of a pain to monitor and them spend hours to come up a few degrees.
This whole week she has been sleepy, sleepy, sleepy.
I don't care what the pediatrician thinks...something is wrong with her. She is sleepy. Dropping her sats (probably because she's sleepy). Today is the 3rd day she hasn't pooped. (With lactulose and a daily suppository). She has discharge in her diaper. Her urine output is down. Her seizures are up (usually indicating she is sick). And now dropping her body temp. Also, most mornings she has a slight fever (97 F---which is up from her normal 95 F). If she doesn't perk up in the next day or two, I am going to have to make the dreaded trip to Salt Lake.
Anyway...sorry if this was a lot of info. I hope it made sense.
As far as the estrogen and "growing up" she has a few armpit hairs (very few) and last we checked (probably a month ago) she was up to 64 pounds. At that time that was up 4 pounds in 4 months. Yuck. But I have to keep telling myself it will be worth it in the end. And hopefully it will be.
Some other concerns I thought of before starting the estrogen were...#1) last time she went through a growth spurt is when she got contractures (really tight muscles that can't straighten out anymore). The rehab dr. said that when you go through a growth spurt the bone grows faster than the muscle can and so the muscles stay short and it leads to contractures. Gee...that would have been nice to know before so I could have been watching for it. So when thinking about doing the estrogen and knowing she was going to go through a growth spurt I talked to Rehab about it. They said yep, it could happen. #2) If fusing your growth plates would stop your ribcage from growing, would it affect her breathing. So I talked to Orthopedics about it. He didn't see a problem with it and thought anything that can keep her in the home and help to be able to take care of her was a good idea. #3) I had heard that when you go through puberty often your seizures get worse. So I talked to neurology about it. (Which by the way my neurologist has a daughter with CP and is DB and is similar to Ellie). He said often seizures do get worse at puberty. But thought anything that could help with her care was worth looking into. All the Dr.'s of course said it was our decision and wouldn't tell us that that was what we should do...but they all seemed supportive of it to me.
She is still having white discharge in her diaper. The assumption is that it is vaginal. But I asked the Special Care Dr. if it could be urinary and said that my friend's (thanks Corrie for the idea) son had been having white discharge and now has kidney stones. She thought it was possible because she usually only has the discharge in the morning and she holds her urine all night. So the sludge could be building up during the night and coming out in the morning. She wrote for some urine tests to be done. The Pediatrician wrote for the discharge to be cultured. I asked if we should see a urologist, they both said, not yet. Let's wait and see what the tests show.
The only way to get a urine sample first thing in the morning is to go to the ER with your script, or have a homecare nurse come in. I asked for a homecare nurse, because if I had to wake her up to go to the ER, then she would urinate on the way there and then we still wouldn't have our sample.
I waited and waited to hear from homecare. Then I went on vacation and it slipped from the front of my brain. Then I called and emailed and finally they called me back. She said she thought it had been done. Anyway, they came out yesterday morning and tried to straight cath her. First they couldn't find the right hole, then the cathedar was too big. So they came out again today and used a baby feeding tube to cath her because they didn't carry any smaller cathedars. Anyway it worked. We got a sample.
She has been having this clear or white (white right now) discharge for a while. I would say since January. We will treat her with antibiotics. It goes away for a few days and then it comes back. It doesn't really bother her, so I thought maybe it was just part of growing up. I haven't been quite as diligent as I perhaps could have been...Ahhhhh bygones...
So now we wait to see what grows out. Hopefully not "mixed flora". That is what they have said other times we have cultured the discharge. Mixed flora means normal body stuff. I want something to grow so we can treat it, have answers and be done.
It has been a rough 2 weeks. My respite worker quit. She was moving away and needed more hours and benefits. So all of those reasons combined meant she needed to quit. We loved her, (and still do), she was like part of the family. She had been with us for 2 1/2 years. That is a long time. The longest I ever had a respite worker before that was 6 months. Plus she was my tenant at my rental property I manage, so that meant that I had to find new renters (which I still haven't found anyone).
I hate training someone new. It takes a good 4-6 months to get someone really trained in everything and every possible scenario I can think of. And then they usually quit. It is a hard, physically demanding, gross, stinky job. It is rewarding. But hard. It is hard to convey all of the medical ins and outs to someone new, hard to teach them Ellie's way of communicating and how to read her body so they can take care of her and I feel comfortable leaving her overnight or for any extended period of time.
We did find a new respite worker right away. Which was great. And so the training began this week. I think she will be great. It just takes time.
Jason and myself were going on a trip to St. George. (Business for him, pleasure for me). Because our respite worker quit, we were unable to leave Ellie at home. Therefore she came with us. It was delightful. It is so easy to ignore Ellie and not do anything fun with her. Just take care of her needs. It was really fun to hang out with her and take her shopping and spoil her. That probably sounds really bad to those of you without kids with special needs. But hey, that's the way it is. I spend hours and hours and hours taking care of her needs that it doesn't leave much time/energy for the fun stuff. Plus with me going to school it has been crazy too. So it was a much needed vacation for both of us.
She was quite sleepy, and a little upper airway congestion while on the trip. And a few less pee-pee briefs. I was a little worried about her. I started giving her benadryl and sudafed D (you can give both at the same time---one drains the sinus' and one dries out the sinus'). Any time we give her Sudafed D she is awake that day. It is great. Sudafed D is found behind the counter at the pharmacy because it has the ingredient in it that they make meth with. The meds helped her breathe better and woke her up so we could have fun.
When we got home I tried to stop giving her the meds and she has just slept and slept and slept all day every day. On Tues morning her oxygen kept dipping to 85% so I kept her home and took her to the pediatrician. I was worried she might have pnemonia. He couldn't find anything wrong with her. So here are the conclusions we came to...
#1) her seizures are worse (possibly due to the puberty) and that is making her tired which in turn makes her oxygen drop.
#2) the discharge in her diaper is some kind of infection and because her defenses are down her seizures got worse. I think it's this one. Either she has a vaginal infection (yeast or otherwise). Or there is something going on with her kidneys that the discharge is actually urinary. And she might have had a cold along with this.
Ellie's seizures have been out of control. She was just having those weird episodes (possibly seizures) during the nights where her oxygen would drop to the mid 70's even though on bi-pap and oxygen. We ended up doing the 3 day in home EEG. The neurologist said some of the episodes were seizures and some were not. He recommended a new seizure med. It has been used in Europe for 10 years but was only recently FDA approved. It seems to work on people who other seizure meds haven't worked on (like Ellie) because it works in the brain differently. The only side-effect is lethargy. But even that is not as bad as with other seizure meds. We decided to try it. Because the waking up 1-5 times during the night for low oxygen due to seizures is not working for me anymore. One thing about the new med (when I read the package insert) is it can interact with antihistamines and cough and cold medicines. You have to talk to your Dr. or pharmacist before taking anything. That's a bummer...no more meth for Ellie (I'm kidding about the meth...you know that...right?). The med also helps with spacticity (tight muscles).
Today she went to Prosthetics and Orthotics (big way of saying brace people). We went to a new place. It is called Hanger Orthotics they are just off 53rd south in SLC. I really like them. I have always gotten all of her braces from Shriners. But the wheelchair ladies (Physical therapist and Occupational therapist) at IHC Homecare Wheelchair shop told me about Hanger and these softer body braces that they make. (Ellie wears a body brace for her scoliosis and to help with positioning since her torso is completely floppy). We were measured for it a few weeks ago and we got it today. It's not nearly as cute as the one from Shriners...but it is WAAAAAYYY softer. I think I'm going to like it alot. Today they cast her for some new arm splints that will be adjustable. This is important because when she gets the botox/phenol in her arms they are pretty loose, but over the next few months as the botox/phenol wears off they get tighter. I am excited for these also. We go back in a few weeks to get fitted for them.
When we got home I took her temp because school thought she was cold today. And lo and behold she was. She was at 92.5. I got to show my new respite worker what we do to warm her up. It took about 2 hours, but we got her up to 95.1. That is acceptable to me. It doesn't scare me anymore when her body temp drops, but it is kind of a pain to monitor and them spend hours to come up a few degrees.
This whole week she has been sleepy, sleepy, sleepy.
I don't care what the pediatrician thinks...something is wrong with her. She is sleepy. Dropping her sats (probably because she's sleepy). Today is the 3rd day she hasn't pooped. (With lactulose and a daily suppository). She has discharge in her diaper. Her urine output is down. Her seizures are up (usually indicating she is sick). And now dropping her body temp. Also, most mornings she has a slight fever (97 F---which is up from her normal 95 F). If she doesn't perk up in the next day or two, I am going to have to make the dreaded trip to Salt Lake.
Anyway...sorry if this was a lot of info. I hope it made sense.
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