Ellie still hasn't gone back to school. She hardly has a cough or any symptoms any more. Except that she still needs a little whiff of oxygen a few times a day.
So yesterday she dropped to maybe 87 or 88 three different times. It's not terribly low. And she only needed the oxygen for less than 5 minutes each time. But I still can't send her back to school until she as been off oxygen for at least one full day.
This morning she as already needed it twice. The second time I didn't put oxygen on her I jsut watched her. She popped back up after a few minutes.
She is still not satting (oxygen saturation in her blood) great. She is hanging out in the low 90's. Which is fine. Normally her sats are in the high 90's. Usually she sats higher than me.
She should not be contagious anymore. We are 11 days out.
Wednesday, February 24, 2010
Saturday, February 20, 2010
Happy=Good
Ellie was sleepy this morning. But now she is awake and happy.
I am needing to suction her every few hours to keep her sats up (with o2).
That sounds bad---but really she is doing really well.
She doesn't seem to be coughing as much.
I asked how long you are contagious. They said really contagious for the first 4 or 5 days. We are 8 days out. I think she'll still stay home from church tomorrow.
As soon as we can get her off of the oxygen, then she can go back to school.
I think she is excited to be getting new couches today....oh wait that's me!
I am needing to suction her every few hours to keep her sats up (with o2).
That sounds bad---but really she is doing really well.
She doesn't seem to be coughing as much.
I asked how long you are contagious. They said really contagious for the first 4 or 5 days. We are 8 days out. I think she'll still stay home from church tomorrow.
As soon as we can get her off of the oxygen, then she can go back to school.
I think she is excited to be getting new couches today....oh wait that's me!
Friday, February 19, 2010
Home
We're home.
She is on 1/8 liter during the day and 3 liters at night.
She still has a cough. But other than the o2 and the cough she is doing great. She alert and awake and happy.
She is on 1/8 liter during the day and 3 liters at night.
She still has a cough. But other than the o2 and the cough she is doing great. She alert and awake and happy.
Thursday, February 18, 2010
Metabolics
I spoke with the metabolic geneticist. I had met with him several months ago and he ran some tests trying to figure out her hypoglycemia.
He wanted to run some more blood tests. The results won't be back for several weeks.
I am 99.8% sure we'll be coming home tomorrow. She is doing really well. We have her on 0.12 of a liter of oxygen. We tried taking her off, but her sats drop. THat's Ok, we can go home on O2. Not a big deal.
We'll see how she does overnight.
SHe was really sleepy, grinding teeth, grumpy today. Then she had a BM and now she is REALLY happy. (She hadn't had one since at least Monday). She is smiling and signing more.
We watched Hannah Montana (one of her favorites).
He wanted to run some more blood tests. The results won't be back for several weeks.
I am 99.8% sure we'll be coming home tomorrow. She is doing really well. We have her on 0.12 of a liter of oxygen. We tried taking her off, but her sats drop. THat's Ok, we can go home on O2. Not a big deal.
We'll see how she does overnight.
SHe was really sleepy, grinding teeth, grumpy today. Then she had a BM and now she is REALLY happy. (She hadn't had one since at least Monday). She is smiling and signing more.
We watched Hannah Montana (one of her favorites).
No RSV
Okay---so she doesn't have RSV. But she does have the Human Metapneumo Virus.
She is doing well. She is down to 1/2 liter of oxygen during the day. They had her at 3 liters during the night. But I think they could have weened it down.
Today's plan is to ween the daytime Oxygen. Then we might go home tomorrow.
All labs look good.
She is awake and happy.
Her temp has been in the 98 F range. Which is higher than normal (her norm is 95-96.5). But she hasn't spiked any fevers.
I can't remember if I said this...They cut her CLonidine in half. (The clonidine was to level out her temps). They lowered it to avoid her low heartrates. So far since lowering it she hasn't dropped. But then again she has a slight fever and is sick so her heartrate would be elevated.
She has not been crying any more.
Her liver enzymes are off. They are going to talk to gastroenterology about it. It could just be the virus.
We are supposed to follow up with endocrinology about her blood sugar, thyroid, cortisol etc...
I think I might also make an appt with metabolics.
She is doing well. She is down to 1/2 liter of oxygen during the day. They had her at 3 liters during the night. But I think they could have weened it down.
Today's plan is to ween the daytime Oxygen. Then we might go home tomorrow.
All labs look good.
She is awake and happy.
Her temp has been in the 98 F range. Which is higher than normal (her norm is 95-96.5). But she hasn't spiked any fevers.
I can't remember if I said this...They cut her CLonidine in half. (The clonidine was to level out her temps). They lowered it to avoid her low heartrates. So far since lowering it she hasn't dropped. But then again she has a slight fever and is sick so her heartrate would be elevated.
She has not been crying any more.
Her liver enzymes are off. They are going to talk to gastroenterology about it. It could just be the virus.
We are supposed to follow up with endocrinology about her blood sugar, thyroid, cortisol etc...
I think I might also make an appt with metabolics.
Wednesday, February 17, 2010
RSV, etc...
Well, Ellie started having a cough on Fri. Jason and the baby also had a cough/cold so I wasn't too worried about it.
On Mon night I had to add oxygen to her bi-pap and also Tues. She was also cying off and on so I thought maybe it was an ear infection.
I took her to the pediatrician on Tues morn. He said no ear infection. He said her throat was a little red. He tested for strep and it was negative. He said that her breathing was a little rattly.
He wrote for blood work and a chest x-ray.
Ellie had an appointment at Primary's to refill her baclofen pump later that afternoon. So I did the blood and x-ray at Primary's since we were already there.
The pediatrician said that if the x-ray showed pnemonia that we should go to the ER.
The x-ray showed pnemonia starting.
So about 5:25 PM we checked into the ER at PCMC.
They ran blood cultures and checked her snot for RSV.
She tested positive for RSV and also Human Metapneumo Virus. The second one is very similar to RSV.
They admitted us. THey said that RSV is raging right now. They put us in NTU (Neuroscience Trauma Unit) because the Medical Unit was completely full. They said that they are double and triple bunking kids upstairs right now. Ellie has her own room
The parent bed in NTU are WAY WAY better than medical. They are more like a futon.
We finally got into a room at 10 PM last night. By the time we got settled in it was midnight.
They said that RSV peaks around 4-7 days. We are at about day 5.
Today we have weaned her O2 to 1 liter (down from 2).
SHe is still coughing occasionally. She is doing well. SHe has been awake and comfortable.
This morning she spiked a fever of 101.8. It came right down with tylenol and an ice water sponge bath. Her temp has been stable for the rest of the day.
Tomorrow morning they are going to recheck her cortisol and thyroid (Remember she had some weird readings on her last hospitalization).
also a CBC and blood gas.
Yesterday her white blood cells were lower than they wanted. I said "don't your blood cells go higher when you are sick?" They said that they can go higher or lower. Today her white blood cells came up a little bit. So that shows that she is fighting and getting better.
Nothing has grown out of her blood cultures.
She doesn't have a focalized pnemonia which would indicate a bacterial infection.
WHat they saw on x-ray was the RSV. She does not have RSV and pnemonia.
SPRING WHERE ARE YOU?!?!?!?
We're doing fine. We'll be home in a few days.
As a side note... Tabitha had a cough and it got better. Then Millie just came down with a cough. They went to the Dr. today and he said that if Ellie has it, then they have it too.
On Mon night I had to add oxygen to her bi-pap and also Tues. She was also cying off and on so I thought maybe it was an ear infection.
I took her to the pediatrician on Tues morn. He said no ear infection. He said her throat was a little red. He tested for strep and it was negative. He said that her breathing was a little rattly.
He wrote for blood work and a chest x-ray.
Ellie had an appointment at Primary's to refill her baclofen pump later that afternoon. So I did the blood and x-ray at Primary's since we were already there.
The pediatrician said that if the x-ray showed pnemonia that we should go to the ER.
The x-ray showed pnemonia starting.
So about 5:25 PM we checked into the ER at PCMC.
They ran blood cultures and checked her snot for RSV.
She tested positive for RSV and also Human Metapneumo Virus. The second one is very similar to RSV.
They admitted us. THey said that RSV is raging right now. They put us in NTU (Neuroscience Trauma Unit) because the Medical Unit was completely full. They said that they are double and triple bunking kids upstairs right now. Ellie has her own room
The parent bed in NTU are WAY WAY better than medical. They are more like a futon.
We finally got into a room at 10 PM last night. By the time we got settled in it was midnight.
They said that RSV peaks around 4-7 days. We are at about day 5.
Today we have weaned her O2 to 1 liter (down from 2).
SHe is still coughing occasionally. She is doing well. SHe has been awake and comfortable.
This morning she spiked a fever of 101.8. It came right down with tylenol and an ice water sponge bath. Her temp has been stable for the rest of the day.
Tomorrow morning they are going to recheck her cortisol and thyroid (Remember she had some weird readings on her last hospitalization).
also a CBC and blood gas.
Yesterday her white blood cells were lower than they wanted. I said "don't your blood cells go higher when you are sick?" They said that they can go higher or lower. Today her white blood cells came up a little bit. So that shows that she is fighting and getting better.
Nothing has grown out of her blood cultures.
She doesn't have a focalized pnemonia which would indicate a bacterial infection.
WHat they saw on x-ray was the RSV. She does not have RSV and pnemonia.
SPRING WHERE ARE YOU?!?!?!?
We're doing fine. We'll be home in a few days.
As a side note... Tabitha had a cough and it got better. Then Millie just came down with a cough. They went to the Dr. today and he said that if Ellie has it, then they have it too.
Wednesday, February 10, 2010
Update
Ellie is doing well. SHe hasn't dropped her temp for a while now. Over the weekend she was up a little into the 97 point somethings.
Heartrate is still dropping on some nights into the 30's. Maybe it has always done it. I don't know?!?!? On those nights I either sleep with her or sit by her bed.
So the last 2 nights her temp has been reading in the 95's or 96's, but er heartrate has still been dropping. I still try warming her up with a heater and electric blanket. When the monitor starts alarming I pinch her or startle her to bring up her heartrate. Once the room gets warmer (over 80 degrees) then her heartrate seems to stay in the mid 40's. THen I can turn down the heat and go to bed.
Typically I leave her door open so that I can hear her alarms and her breathing, but to keep the heat in we have been closing the door. But then I can't hear the alarms very well. Something is wrong with our baby monitors. I will have to look at them when I'm not so sleepy.
Around 7 PM she has been crying to go to bed.
We have started checking her heeartrate before we give her sleeping pill. It is already low then we only give her 1/4. But then I don't think she sleeps well and then she is tired the nxt day. She really needs 1/2 (normal dose) but I'm afraid it will lower her heartrate even more.
Heartrate is still dropping on some nights into the 30's. Maybe it has always done it. I don't know?!?!? On those nights I either sleep with her or sit by her bed.
So the last 2 nights her temp has been reading in the 95's or 96's, but er heartrate has still been dropping. I still try warming her up with a heater and electric blanket. When the monitor starts alarming I pinch her or startle her to bring up her heartrate. Once the room gets warmer (over 80 degrees) then her heartrate seems to stay in the mid 40's. THen I can turn down the heat and go to bed.
Typically I leave her door open so that I can hear her alarms and her breathing, but to keep the heat in we have been closing the door. But then I can't hear the alarms very well. Something is wrong with our baby monitors. I will have to look at them when I'm not so sleepy.
Around 7 PM she has been crying to go to bed.
We have started checking her heeartrate before we give her sleeping pill. It is already low then we only give her 1/4. But then I don't think she sleeps well and then she is tired the nxt day. She really needs 1/2 (normal dose) but I'm afraid it will lower her heartrate even more.
Tuesday, February 2, 2010
Another long night
Last night was weird. She was asleep and her heartrate kept dropping into the 30's (like it does when her temp drops). But her temp was fine (95.7). She has been consistently running in the 95's or 96's.
THe Dr. said if her heartrate drops to stimulate her. Basically hurt her. Like pinch her fingers, etc... To get her heartrate up. So I did. It would bring it up for a few seconds but would immediately go back down.
After a while of that I decided to turn up the space heaters and electric blanket and see what happened. Her heartrate started raising. I climbed in bed with her to make sure she didn't get too hot. I fell asleep in bed with her and woke up at 5 AM.
THe heat brought her heartrate up. WHat does this mean?
I suppose I should have taken a rectal temp. But she was asleep and I was tired too.
Anyway, weird!
Tormorrow we pick up a holter monitor. It will strap to her and she will wear it around for a few days to monitor her heart rhythms.
THe Dr. said if her heartrate drops to stimulate her. Basically hurt her. Like pinch her fingers, etc... To get her heartrate up. So I did. It would bring it up for a few seconds but would immediately go back down.
After a while of that I decided to turn up the space heaters and electric blanket and see what happened. Her heartrate started raising. I climbed in bed with her to make sure she didn't get too hot. I fell asleep in bed with her and woke up at 5 AM.
THe heat brought her heartrate up. WHat does this mean?
I suppose I should have taken a rectal temp. But she was asleep and I was tired too.
Anyway, weird!
Tormorrow we pick up a holter monitor. It will strap to her and she will wear it around for a few days to monitor her heart rhythms.
Monday, February 1, 2010
More Crying
Her temp stayed up over the weekend. I know I said I didn't like the Clonidine. But I think now I do. Her body feels warm. Her BP never dropped. I don't know that she's happier or more comfortable with the clonidine, but I don't think she's worse off.
Last night she started crying about 7 PM. (The night before it was at 6 PM). She was doing the same thing she did the night before (smack lips, drool a lot and cry). I told her to smack her lips when I touched the part of her body that hurt. THat was unfruitful. So we put her to bed. We checked her heartrate. It wasn't up. So we knew that she probably wasn't in pain. She was still crying in bed. We gave her her meds (including her nightly sleeping pill). She stopped crying. So I think she knows that we give her meds (through her g-tube) into her tummy. SHe associates that with eating. Her old sign for eating was smacking her lips. SO she was saying feed me my meds/sleeping pill so I can go to sleep. We'll have to see if the trend keeps up. She is really smart. SHe communicates all of the time. We are the slow ones that have to figure out what she is saying.
Her signs change all of the time depending on her abilities at the time. She had an old sign for bed (she would bring her arms into her chest and shiver).
SO we just have to try and keep up with her expanding vocabulary of signs.
After we gave her the sleeping pill last night I went in to check on her to see if she was asleep and ready for her bi-pap mask. I thought she was asleep, but then she started kicking one of ther legs. THat means she wants a diaper change or a change of position (usually diaper). ANd lo and behold she did need a change.
What a smartie pants!
Last night she started crying about 7 PM. (The night before it was at 6 PM). She was doing the same thing she did the night before (smack lips, drool a lot and cry). I told her to smack her lips when I touched the part of her body that hurt. THat was unfruitful. So we put her to bed. We checked her heartrate. It wasn't up. So we knew that she probably wasn't in pain. She was still crying in bed. We gave her her meds (including her nightly sleeping pill). She stopped crying. So I think she knows that we give her meds (through her g-tube) into her tummy. SHe associates that with eating. Her old sign for eating was smacking her lips. SO she was saying feed me my meds/sleeping pill so I can go to sleep. We'll have to see if the trend keeps up. She is really smart. SHe communicates all of the time. We are the slow ones that have to figure out what she is saying.
Her signs change all of the time depending on her abilities at the time. She had an old sign for bed (she would bring her arms into her chest and shiver).
SO we just have to try and keep up with her expanding vocabulary of signs.
After we gave her the sleeping pill last night I went in to check on her to see if she was asleep and ready for her bi-pap mask. I thought she was asleep, but then she started kicking one of ther legs. THat means she wants a diaper change or a change of position (usually diaper). ANd lo and behold she did need a change.
What a smartie pants!
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