I'm feeling good!!! Taken 5/21/10
Friday, May 21, 2010
Test results
So we have been on the amoxicillan for the ear infection, cipro for the snot culture and nystatin for the thrush.
She has been off oxygen for a day or 2 now. SHe is doing pretty well. She is awake and alert all day long.
She still has a cough, her heart rate is still high (90's-130's)and she is still spiking fevers in the 99's.
She as definitely improved, but she is not getting better as fast as she sometimes does. Usually as soon as we start antibiotics she is acting completely better within a day or 2.
Millie and Tabitha both had a little stomach bug, so I thought maybe she just caught that as well.
THe ER just called and said they got her test results back. Her snot grew psedemonas. I think that psedemonas is becoming her arch enemy. She has had a few times over the course of this winter.
The ER said that cipro is an intermediate antibiotic to this strain. Meaning that it is pretty good, but not the best. I am going to try and convince them to switch to the best considering she still has a lot of the symptoms.
She is still doing really well, don't be worried about her. Her sats are staying up, she is maintaining her body temp most of the time, she is awake and alert. I will take a pic of her and post it for everyone to see how good she looks.
She has been off oxygen for a day or 2 now. SHe is doing pretty well. She is awake and alert all day long.
She still has a cough, her heart rate is still high (90's-130's)and she is still spiking fevers in the 99's.
She as definitely improved, but she is not getting better as fast as she sometimes does. Usually as soon as we start antibiotics she is acting completely better within a day or 2.
Millie and Tabitha both had a little stomach bug, so I thought maybe she just caught that as well.
THe ER just called and said they got her test results back. Her snot grew psedemonas. I think that psedemonas is becoming her arch enemy. She has had a few times over the course of this winter.
The ER said that cipro is an intermediate antibiotic to this strain. Meaning that it is pretty good, but not the best. I am going to try and convince them to switch to the best considering she still has a lot of the symptoms.
She is still doing really well, don't be worried about her. Her sats are staying up, she is maintaining her body temp most of the time, she is awake and alert. I will take a pic of her and post it for everyone to see how good she looks.
Tuesday, May 18, 2010
Spots
Sun morning Ace noticed that Ellie was drooling blood tinged saliva. I looked in Ellie's mouth and she had these spots all over her tongue and the bottom side of her tongue was bleeding. I wasn't too worried, I figured it was a virus.
Remember on Wed Instacare said she had an ear infection and a sinus infection. Then Fri after the initial blood work in the ER the Dr. thought she had an ear infection and a virus.
So I figured the spots were the virus.
At the same time she was also coughing a lot more and it was wet and junky. I figured the infection was clearing out, but I wanted to make sure the slight pnemonia wasn't getting worse.
But I thought I'd take her to Instacare anyway. I was going to take her to her pediatrician in Layton. But when I sat her up in the wheelchair her sats weren't nearly as good. THey were hovering around 88-89 even with o2 with a few occasional dips to 86.
So then I decided to take her to south ogden instacare instead. When we got there they said that it was an hour wait (the Dr. forgot he was working). So then I was trying to decide go to Ogden Regional ER, Ogden CLinic instacare, or Primary CHildrens ER.
When I left the house I hadn't thought that this was "ER worthy" but then when her sats weren't great I started worrying about the pnemonia being worse.
So I said a prayer to know what to do. I thought..."turn up the oxygen". And I was like "that is a really good idea, why didn't I think of that?" So when I went to turn it up I saw that the oxygen wasn't turned on all the way. So I turned it on and then her sats were much better. I thanked Heavenly Father and proceeded to Ogden CLinic Instacare.
When I explained to the front desk what was going on, they said "If it was bad enought to be in the ER yesterday, then that's where you should be today." I said "It's a totally different problem". They said, "That's where you need to go."
So I loaded Ellie back in the van for a third time and went to the ER. The funny thing was at the ER we have had the same nurse for the last 3 visits (all in the last few weeks).
I was kind of embarrassed to be there, because it really wasn't an emergency.
THey did a repeat chest x-ray, looked at her previous labs (from when she was there Fri) and looked at her tongue.
He thought her tongue was Thrush (a yeast infection). The antibiotics had killed all of the good bacteria and let the bad bacteria take over. THey gave her a prescription for us to spread around inside her mouth. (It is a liquid, like mouthwash).
The x-ray looked about the same. On Fri they said a possible pnemonia. On Sun he said it was a pnemonia on the right side. But it didn't look worse and since her oxygen needs were decreasing, he wasn't worried about it.
THe blood and urine from Fri were clean. THe snot was growing Gram Negative Bacteria. So it was not a virus. THe amoxicillan that she had started on Wed night does not cover gram negative bacteria so they started her on another antibiotic.
Monday she needed 1/2 liter of oxygen in the morning and 1/4 by evening. I turned it up to 2 during the night just to be safe.
Today she is feeling much better. She looks better, feels better. SHe is only on 1/8 liter of oxygen She is still occassionally coughing. She is awake and alert. She doesn't want to sit up in her wheelchair. I'm not sure if it's the pnemonia or the scoliosis. No suctioning needs today. Today her tongue is looking 70% better. I tried taking pictures of it on Sunday, but they didn't turn out. She still had a fever of 99.7 this morning, but it came down with wet rags and ibuprofen.
It seems that during the night or early morning is when she has the most trouble with her temp.
A few more days and she'll be as good as new.
So this week we had 3 visits to Instacare, 2 visits to the ER and 1 ride in the ambulance.
Remember on Wed Instacare said she had an ear infection and a sinus infection. Then Fri after the initial blood work in the ER the Dr. thought she had an ear infection and a virus.
So I figured the spots were the virus.
At the same time she was also coughing a lot more and it was wet and junky. I figured the infection was clearing out, but I wanted to make sure the slight pnemonia wasn't getting worse.
But I thought I'd take her to Instacare anyway. I was going to take her to her pediatrician in Layton. But when I sat her up in the wheelchair her sats weren't nearly as good. THey were hovering around 88-89 even with o2 with a few occasional dips to 86.
So then I decided to take her to south ogden instacare instead. When we got there they said that it was an hour wait (the Dr. forgot he was working). So then I was trying to decide go to Ogden Regional ER, Ogden CLinic instacare, or Primary CHildrens ER.
When I left the house I hadn't thought that this was "ER worthy" but then when her sats weren't great I started worrying about the pnemonia being worse.
So I said a prayer to know what to do. I thought..."turn up the oxygen". And I was like "that is a really good idea, why didn't I think of that?" So when I went to turn it up I saw that the oxygen wasn't turned on all the way. So I turned it on and then her sats were much better. I thanked Heavenly Father and proceeded to Ogden CLinic Instacare.
When I explained to the front desk what was going on, they said "If it was bad enought to be in the ER yesterday, then that's where you should be today." I said "It's a totally different problem". They said, "That's where you need to go."
So I loaded Ellie back in the van for a third time and went to the ER. The funny thing was at the ER we have had the same nurse for the last 3 visits (all in the last few weeks).
I was kind of embarrassed to be there, because it really wasn't an emergency.
THey did a repeat chest x-ray, looked at her previous labs (from when she was there Fri) and looked at her tongue.
He thought her tongue was Thrush (a yeast infection). The antibiotics had killed all of the good bacteria and let the bad bacteria take over. THey gave her a prescription for us to spread around inside her mouth. (It is a liquid, like mouthwash).
The x-ray looked about the same. On Fri they said a possible pnemonia. On Sun he said it was a pnemonia on the right side. But it didn't look worse and since her oxygen needs were decreasing, he wasn't worried about it.
THe blood and urine from Fri were clean. THe snot was growing Gram Negative Bacteria. So it was not a virus. THe amoxicillan that she had started on Wed night does not cover gram negative bacteria so they started her on another antibiotic.
Monday she needed 1/2 liter of oxygen in the morning and 1/4 by evening. I turned it up to 2 during the night just to be safe.
Today she is feeling much better. She looks better, feels better. SHe is only on 1/8 liter of oxygen She is still occassionally coughing. She is awake and alert. She doesn't want to sit up in her wheelchair. I'm not sure if it's the pnemonia or the scoliosis. No suctioning needs today. Today her tongue is looking 70% better. I tried taking pictures of it on Sunday, but they didn't turn out. She still had a fever of 99.7 this morning, but it came down with wet rags and ibuprofen.
It seems that during the night or early morning is when she has the most trouble with her temp.
A few more days and she'll be as good as new.
So this week we had 3 visits to Instacare, 2 visits to the ER and 1 ride in the ambulance.
Saturday, May 15, 2010
O2
Ellie as been awake for most of the day today. She has been smiling.
Her breathing is a little congested (upper airway I think). When I suction her I get lots of thick green junk from her throat (not her nose). She has needed o2 all day today. I just tried taking her off and her sats didn't stay up. SO back on the nasal canula. But I did turn the flow down to 1 (from 2) and she seems to be maintaining.
Her Temp has been stable today. ANywhere from 95-98 something. We are giving her regularly scheduled pain/fever reducers whether she needs it or not.
So overall I would say it's been a good day.
I think we'll still keep her home form church tomorrow.
The antibiotics seem to be doing their job. Thank you Louis Pasteur.
Her breathing is a little congested (upper airway I think). When I suction her I get lots of thick green junk from her throat (not her nose). She has needed o2 all day today. I just tried taking her off and her sats didn't stay up. SO back on the nasal canula. But I did turn the flow down to 1 (from 2) and she seems to be maintaining.
Her Temp has been stable today. ANywhere from 95-98 something. We are giving her regularly scheduled pain/fever reducers whether she needs it or not.
So overall I would say it's been a good day.
I think we'll still keep her home form church tomorrow.
The antibiotics seem to be doing their job. Thank you Louis Pasteur.
Friday, May 14, 2010
Virus
She has been stable all day. Still needs 2 liters of o2. Heart rate down to 113. She is awake now, but has been sleepy the rest of the day. I even got a few small smiles a few minutes ago. Temp has been 98.2-98.8 all day. Seems to be doing well. Her pediatrician looked at her lab results and said it looks like she has a viral infection on top of the ear infection.
High Temp
Wed mroning she woke up and had a stuffy nose. ALl day she kept gagging. When she got home from school she was grinding her teeth, which usually means that she has an ear infection.
Her regular Dr. doesn't work on Thursdays. SO I knew I couldn't take her in the next day. We decided to take her to instacare. SHe had an ear infection in the Right ear and a sinus infection. She was gagging on the sinus infectin draining. Wasn't she so smart to know she had an ear infection??? Anyway, we started her on antibiotics that night.
Yesterday she was still gagging in the morning, but by afternoon she had stopped. She seemed to be doing a little better.
THis morning at 6 Jason got up and he promptly woke me up. Her heart rate was 180 and she was hyperventilating. Her forehead temp was 102. SHe might have been having a small seizure. We stripped her down and put her in the tub and ran lukewarm water over her. Her o2 was in the low 80's so we put oxygen on her. I was able to suction ut a bunch of light green/yellow gunk out of her throat. After a while of that we decided to check her temperature again, this time rectally. It was 106. Not 100.6 but 106 F. Her heartrate was still in the 180's.
We called the ambulance and went to the ER. In the ER her rectal temp was 102.
They did blood, urine, snot samples and chest x-ray. THe chest x-ray showed a possible pnemonia on the right. Which I wouldn't be surprised at-with all the gunk she was choking on.
Her temp gradually came down as did her heart rate. She is not back to normal, but they did send us home. It might have even broken the record for the shortest ER visit ever at 1.5-2 hours. Ogden Regional ER is a lot faster than McKay Dee ER. I think just because it's not as big. On the downside I wonder if because they are slower, maybe they don't have as much experience?!?!? But they are very attentive and fast and they listen to the parents!
Right now her temp is 98 F (still warm for her), her heart rate is 130, her sats are 95% with 3 liters of o2. She is sleepy, I think she ran a marathon this morning.
I am really fighting the urge right now to bundle her up. It is so weird to see her just in her diaper and not under a bunch of blankets.
Her regular Dr. doesn't work on Thursdays. SO I knew I couldn't take her in the next day. We decided to take her to instacare. SHe had an ear infection in the Right ear and a sinus infection. She was gagging on the sinus infectin draining. Wasn't she so smart to know she had an ear infection??? Anyway, we started her on antibiotics that night.
Yesterday she was still gagging in the morning, but by afternoon she had stopped. She seemed to be doing a little better.
THis morning at 6 Jason got up and he promptly woke me up. Her heart rate was 180 and she was hyperventilating. Her forehead temp was 102. SHe might have been having a small seizure. We stripped her down and put her in the tub and ran lukewarm water over her. Her o2 was in the low 80's so we put oxygen on her. I was able to suction ut a bunch of light green/yellow gunk out of her throat. After a while of that we decided to check her temperature again, this time rectally. It was 106. Not 100.6 but 106 F. Her heartrate was still in the 180's.
We called the ambulance and went to the ER. In the ER her rectal temp was 102.
They did blood, urine, snot samples and chest x-ray. THe chest x-ray showed a possible pnemonia on the right. Which I wouldn't be surprised at-with all the gunk she was choking on.
Her temp gradually came down as did her heart rate. She is not back to normal, but they did send us home. It might have even broken the record for the shortest ER visit ever at 1.5-2 hours. Ogden Regional ER is a lot faster than McKay Dee ER. I think just because it's not as big. On the downside I wonder if because they are slower, maybe they don't have as much experience?!?!? But they are very attentive and fast and they listen to the parents!
Right now her temp is 98 F (still warm for her), her heart rate is 130, her sats are 95% with 3 liters of o2. She is sleepy, I think she ran a marathon this morning.
I am really fighting the urge right now to bundle her up. It is so weird to see her just in her diaper and not under a bunch of blankets.
Friday, May 7, 2010
Thumbs up!
Last night passed without incident. She is doing well. We have started weaning the clonidine.
Note to self: Hospitalist Dickerson, Neurology Simard, Rainbow kids, Call about Dr. Murphy's clinic
Note to self: Hospitalist Dickerson, Neurology Simard, Rainbow kids, Call about Dr. Murphy's clinic
Thursday, May 6, 2010
Home Again Home Again Jiggety Jig
We're home.
We have decided to wean the clonidine. If things go badly then we will start it back up again.
Basically this was a waste of a week. Ellie was fine. She had her normal dips in temp. We just over-reacted. It was worsened by the fact that we missed her clonidine doses for a few days.
However, I'm glad to be home, that Ellie is healthy and that there are no new diagnosis or problems to deal with.
Now---to unpack or procrastinate. Which do you think will win?
We have decided to wean the clonidine. If things go badly then we will start it back up again.
Basically this was a waste of a week. Ellie was fine. She had her normal dips in temp. We just over-reacted. It was worsened by the fact that we missed her clonidine doses for a few days.
However, I'm glad to be home, that Ellie is healthy and that there are no new diagnosis or problems to deal with.
Now---to unpack or procrastinate. Which do you think will win?
Scatter Brained
Sorry my last post seemed really random and scatter brained to me. It was an emotional day.
Anyway, we got the bi-pap setting fixed last night and she had an uneventful night. Yea!
I bet we'll go home today.
THe only 2 things I want to clear up are #1) When I position her on her right side she desats. and if I position her on her left side she fusses. At least that is what she did yesterday. I need to experiment today. I don't know if it's from her scoliosis or if the sensors just don't read right. #2)Clonidine. CLonidine. Clonidine. It is a pain to give. A pain to refill. It is a scary medicine. THen the Neurologist yesterday said that it can make your temp lower. SO are we causing more harm than good? On the other hand, she has been happier and less sleepy days than she has been/had in a long time.
SHe is awake and happy today. SHe is watching TV. It is Mickey Mouse CLubhouse and she is signing more, more, more.
Anyway, we got the bi-pap setting fixed last night and she had an uneventful night. Yea!
I bet we'll go home today.
THe only 2 things I want to clear up are #1) When I position her on her right side she desats. and if I position her on her left side she fusses. At least that is what she did yesterday. I need to experiment today. I don't know if it's from her scoliosis or if the sensors just don't read right. #2)Clonidine. CLonidine. Clonidine. It is a pain to give. A pain to refill. It is a scary medicine. THen the Neurologist yesterday said that it can make your temp lower. SO are we causing more harm than good? On the other hand, she has been happier and less sleepy days than she has been/had in a long time.
SHe is awake and happy today. SHe is watching TV. It is Mickey Mouse CLubhouse and she is signing more, more, more.
Wednesday, May 5, 2010
Normal day
Ellie has acted really normal all day. She has been smiley and awake.
Neurology came by. I really liked her except for the fact that she kept telling me over and over how Ellie could die any time, she was really fragile, her brain could only handle so much, more tests wouldn't change the treatment, etc... I of course know this, but I don't want to hear it. It made me cry. At the time I felt like she was sending Ellie home to die.
However, after she left and I was able to think I could see what she was saying. She was saying they haven't found any infection or anything to explain the low body temp. So she was saying that she was good, she was fine. Yes she had a low body temp and low heart rate, but that is just ELlie, she has probably had that for a long long time.
She wanted us to come up with a plan to know what we can manage at home and when to take her in to the ER so we're not here all of the time. Which we already have a plan. I think the plan failed and we jumped the gun because we had missed the clonidine so her temp had fluctated so much in 1 week.
Anyway she also thought that the clonidine could cause low temp since it's intended purpose is to lower blood pressure. So I don't knwo if we should continue it. I felt like it was helping, but was I just hoping or was it really?
For now we are continueing it.
The neurologist felt very strongly that the bi-pap settings must be wrong and that is why she desatted. So we double checked and they were wrong. We have corrected it for tonight and I am really really really really hoping that it works tonight. That we don't have anything scary tonight.
I think we might go home tomorrow if nothing happens tonight. Or maybe the next day. They don't have any answers. They don't want to just keep running tests just because they can.
I feel positive about tonight and think that the bi-pap settings will make a difference. But I am also nervous.
Neurology came by. I really liked her except for the fact that she kept telling me over and over how Ellie could die any time, she was really fragile, her brain could only handle so much, more tests wouldn't change the treatment, etc... I of course know this, but I don't want to hear it. It made me cry. At the time I felt like she was sending Ellie home to die.
However, after she left and I was able to think I could see what she was saying. She was saying they haven't found any infection or anything to explain the low body temp. So she was saying that she was good, she was fine. Yes she had a low body temp and low heart rate, but that is just ELlie, she has probably had that for a long long time.
She wanted us to come up with a plan to know what we can manage at home and when to take her in to the ER so we're not here all of the time. Which we already have a plan. I think the plan failed and we jumped the gun because we had missed the clonidine so her temp had fluctated so much in 1 week.
Anyway she also thought that the clonidine could cause low temp since it's intended purpose is to lower blood pressure. So I don't knwo if we should continue it. I felt like it was helping, but was I just hoping or was it really?
For now we are continueing it.
The neurologist felt very strongly that the bi-pap settings must be wrong and that is why she desatted. So we double checked and they were wrong. We have corrected it for tonight and I am really really really really hoping that it works tonight. That we don't have anything scary tonight.
I think we might go home tomorrow if nothing happens tonight. Or maybe the next day. They don't have any answers. They don't want to just keep running tests just because they can.
I feel positive about tonight and think that the bi-pap settings will make a difference. But I am also nervous.
Snag
So we ran into a bit of a snag last night. Before I begin, let me say Ellie is doing fine now. But we had a rough night.
The first ngiht here in ICU there was a time when her o2 dropped and even thouh ehr bi-pap was on her respiration (# of breaths) dropped. They said that she must have been obstructing (her airway was being blocked by something---tongue? airway?? etc...).
We then last night at 2 AM her o2 dropped to the 70's for no apparent reason even though she was still on the bi-pap. After a few minutes she came back up.
At 3 AM it got even worse. Her o2 dropped to 38. Her respirations dropped to 6 (even though the machine was giving her 22 breaths per minute). I was talking loudly to her telling her to breath, I was blowing in her face to startle her into breathing, I was vigorously rubbing her chest to get her to breathe. THe nurse called for the charge nurse and the Dr. started bagging her (covering her nose and mouth and forcing breaths of air into her). She was blue. I REALLY REALLY thought they were going to push the code blue button. It was really scary.
Her eyes were rolling up in her head, so I'm 99% sure she was having a seizure. It was probably what the other 2 times were also.
I was there when they called a code blue on her before (when she was 5 1/2 months old). It was very scary. And last night was even scarier because I had seen it before.
And an hour later she dropped to the 70's again.
THey wrote orders to give her medicine if she is seizing, drops her sats and they can't pull her out of it. If we can stop the seizure then the machine (bi-pap) can take over. THe risk is that the meds can depress your breathing, which hers in this case, would already be depressed.
This morning she is awake and alert. She is smiling and happy.
One other "normal" seizure for her this morning. Eyes twitchng and arm twitching. But sats did not drop.
THrough the years her seizures have gone through cycles. She will ahve one type of seizure for months to a year. THen all of a sudden it will morph and she will get rid of that kind of seizure and start into a new kind. If that is what is happening then we are in big trouble. I don't think that's the case though. I still think she has an infection-they just can't find it.
We have been through at least 10 seizure meds and none helped. She has a vagel nerve stimulator that helped for a year, but then it made things worse, so it is turned off. We have thought of doing the ketogenic diet, and maybe it's time.
ENT came by, they think the trach site infection is just a skin infection. THey don't think it's a fistula (opening into her trachea). If it keeps coming back, then they would think about going in and surgically looking for a fistula and fixing it by overlapping the muscles.
Her trach site and lymph node look pretty good.
THe hospitalist (ie: hospital pediatrician) thinks the groin spots are not infection. Wound care came by and said that some scars stay red. Especially since it's in her diaper area, the diaper is probably rubbing it and it's always moist.
The hospitalist is going to stop the IV antibiotics. He thinks the infections are looking better. Plus last night and this moning about 2 hours after administering it she got a rash on her torso and limbs. It wasn't bad. Last night they gave her benadryl and today it went away on it's own.
THey are going to send neurology in to consult. We had an MRI scheduled for next Week anyway (to look at her brain to try and find a reason for her temp/heart rate drops), but I'm thinking now they will probably do it inpatient instead.
So far today she has had blood work, chest x-rays and abdomin x-rays to look at stool. She has only had 1 small BM in about 7 days.
We will be giving her an enema and sending off a stool sample.
Like I said, today she is doing good.
We got to play hospital Bingo and tell some jokes over the TV. (They do it every wed. You play, get a prize, you can call in on the phone and tell them jokes that they broadcast) It's fun and gives you something to break up the days and something to look forward to.
Needless to say, we won't be coming home anytime soon (at least not today or tomorrow like I previously stated).
THey have a lot more tests to run. Today I am working on getting an oscillating mattress for her. It fills different pockets with air and the poskets go through cycles of being blown up or beng deflated. It prevents bedsores. SHe has one at home and if she is going to be in the hospital for more than a few days, then she needs it. Especially because for some reason (maybe her scoliosis) I can't lay her on her side without her dropping her respirations and her sats. (That has only been this hospitalization).
We are also going to give her a bath. Which I desperately need also.
So that's the plan for today.
The first ngiht here in ICU there was a time when her o2 dropped and even thouh ehr bi-pap was on her respiration (# of breaths) dropped. They said that she must have been obstructing (her airway was being blocked by something---tongue? airway?? etc...).
We then last night at 2 AM her o2 dropped to the 70's for no apparent reason even though she was still on the bi-pap. After a few minutes she came back up.
At 3 AM it got even worse. Her o2 dropped to 38. Her respirations dropped to 6 (even though the machine was giving her 22 breaths per minute). I was talking loudly to her telling her to breath, I was blowing in her face to startle her into breathing, I was vigorously rubbing her chest to get her to breathe. THe nurse called for the charge nurse and the Dr. started bagging her (covering her nose and mouth and forcing breaths of air into her). She was blue. I REALLY REALLY thought they were going to push the code blue button. It was really scary.
Her eyes were rolling up in her head, so I'm 99% sure she was having a seizure. It was probably what the other 2 times were also.
I was there when they called a code blue on her before (when she was 5 1/2 months old). It was very scary. And last night was even scarier because I had seen it before.
And an hour later she dropped to the 70's again.
THey wrote orders to give her medicine if she is seizing, drops her sats and they can't pull her out of it. If we can stop the seizure then the machine (bi-pap) can take over. THe risk is that the meds can depress your breathing, which hers in this case, would already be depressed.
This morning she is awake and alert. She is smiling and happy.
One other "normal" seizure for her this morning. Eyes twitchng and arm twitching. But sats did not drop.
THrough the years her seizures have gone through cycles. She will ahve one type of seizure for months to a year. THen all of a sudden it will morph and she will get rid of that kind of seizure and start into a new kind. If that is what is happening then we are in big trouble. I don't think that's the case though. I still think she has an infection-they just can't find it.
We have been through at least 10 seizure meds and none helped. She has a vagel nerve stimulator that helped for a year, but then it made things worse, so it is turned off. We have thought of doing the ketogenic diet, and maybe it's time.
ENT came by, they think the trach site infection is just a skin infection. THey don't think it's a fistula (opening into her trachea). If it keeps coming back, then they would think about going in and surgically looking for a fistula and fixing it by overlapping the muscles.
Her trach site and lymph node look pretty good.
THe hospitalist (ie: hospital pediatrician) thinks the groin spots are not infection. Wound care came by and said that some scars stay red. Especially since it's in her diaper area, the diaper is probably rubbing it and it's always moist.
The hospitalist is going to stop the IV antibiotics. He thinks the infections are looking better. Plus last night and this moning about 2 hours after administering it she got a rash on her torso and limbs. It wasn't bad. Last night they gave her benadryl and today it went away on it's own.
THey are going to send neurology in to consult. We had an MRI scheduled for next Week anyway (to look at her brain to try and find a reason for her temp/heart rate drops), but I'm thinking now they will probably do it inpatient instead.
So far today she has had blood work, chest x-rays and abdomin x-rays to look at stool. She has only had 1 small BM in about 7 days.
We will be giving her an enema and sending off a stool sample.
Like I said, today she is doing good.
We got to play hospital Bingo and tell some jokes over the TV. (They do it every wed. You play, get a prize, you can call in on the phone and tell them jokes that they broadcast) It's fun and gives you something to break up the days and something to look forward to.
Needless to say, we won't be coming home anytime soon (at least not today or tomorrow like I previously stated).
THey have a lot more tests to run. Today I am working on getting an oscillating mattress for her. It fills different pockets with air and the poskets go through cycles of being blown up or beng deflated. It prevents bedsores. SHe has one at home and if she is going to be in the hospital for more than a few days, then she needs it. Especially because for some reason (maybe her scoliosis) I can't lay her on her side without her dropping her respirations and her sats. (That has only been this hospitalization).
We are also going to give her a bath. Which I desperately need also.
So that's the plan for today.
Tuesday, May 4, 2010
Noon
Well we made it to the floor about Noon. We got a nice room. THere are only a few that have their own shower in the room, and we got one!!! (You can see you get excited over little things in the hospital)
Anyway there were rumors that we will be going home tomorrow, but I wouldn't pass that rumor on. I think it will be THurs instead. Maybe tomorrow, but more likely Thurs.
All blood and urine work is still clean.
She is still happy, good temp, good color, good vitals.
She had kind of a rash tonight before I left so they were going to give her benadryl.
Still her trach site looks better and lymph node looks smaller. But groin shows no improvement. They are keeping her on IV antibiotics.
Today they did no new tests. It was a really boring day. Ellie and I slept off and on all day because we were so tired from the night before.
THey sent in nutrition because our she (nutritionist) had previously had us adding a potassium based salt called "Lite Salt" to her daily formula for her electrolytes. Since her potassium was high I asked if we should hold the lite salt. The nutritionist didn't think it was related, but agreed to take her off of it. Instead we will be adding regular salt to her formula.
The other Dr. that came by today was ENT. They wanted to consult to see if maybe she had a fistula (spell check) which would be a tubular opening from her trachea to her trach scar. He said it sounds likely that she does. They would have to go in and surgically fix it. (make an incision then overlap the muscles). He thought the trach site looked good and it doesn't sound like he would be inclined to go in and fix anything at this point.
I (Mikael) ran home this evening (thanks for the ride Dad) to celebrate Tabitha's 1st birthday.
I will be headed back down to the hospital in an hour or two.
Anyway there were rumors that we will be going home tomorrow, but I wouldn't pass that rumor on. I think it will be THurs instead. Maybe tomorrow, but more likely Thurs.
All blood and urine work is still clean.
She is still happy, good temp, good color, good vitals.
She had kind of a rash tonight before I left so they were going to give her benadryl.
Still her trach site looks better and lymph node looks smaller. But groin shows no improvement. They are keeping her on IV antibiotics.
Today they did no new tests. It was a really boring day. Ellie and I slept off and on all day because we were so tired from the night before.
THey sent in nutrition because our she (nutritionist) had previously had us adding a potassium based salt called "Lite Salt" to her daily formula for her electrolytes. Since her potassium was high I asked if we should hold the lite salt. The nutritionist didn't think it was related, but agreed to take her off of it. Instead we will be adding regular salt to her formula.
The other Dr. that came by today was ENT. They wanted to consult to see if maybe she had a fistula (spell check) which would be a tubular opening from her trachea to her trach scar. He said it sounds likely that she does. They would have to go in and surgically fix it. (make an incision then overlap the muscles). He thought the trach site looked good and it doesn't sound like he would be inclined to go in and fix anything at this point.
I (Mikael) ran home this evening (thanks for the ride Dad) to celebrate Tabitha's 1st birthday.
I will be headed back down to the hospital in an hour or two.
The Floor
The Dr.'s just rounded. so here's the low-down...
We will be transferred to the floor. I'm sure it will take hours, it always does. But hey, we'll take it.
They think that her heart rhythm was due to her potassium being high. THe potassium is back to normal and the heart rhythm is back to normal. THey are not concerned about the heart rhythm anymore.
The blood and urine is not showing any infection so far. It doesn't mean that she doesn't have an infection, it is just not showing up. It could be a skin infection, it could too small of an infection to show up, or it could be because she has already been on antibiotics for over 20 days. SOmething could still grow out of the cultures, but nothing is showing up on the initial blood work.
Chest x-ray was clear. Breath sounds are clear.
She is doing great and I think the IV antibiotics are helping the lymph nodes. They talked aout switching to an oral (g-tube) antibiotic I don't really want them too. Because the IV antibiotic seems to be helping when the previous oral antibiotic was doing nothing.
We will be transferred to the floor. I'm sure it will take hours, it always does. But hey, we'll take it.
They think that her heart rhythm was due to her potassium being high. THe potassium is back to normal and the heart rhythm is back to normal. THey are not concerned about the heart rhythm anymore.
The blood and urine is not showing any infection so far. It doesn't mean that she doesn't have an infection, it is just not showing up. It could be a skin infection, it could too small of an infection to show up, or it could be because she has already been on antibiotics for over 20 days. SOmething could still grow out of the cultures, but nothing is showing up on the initial blood work.
Chest x-ray was clear. Breath sounds are clear.
She is doing great and I think the IV antibiotics are helping the lymph nodes. They talked aout switching to an oral (g-tube) antibiotic I don't really want them too. Because the IV antibiotic seems to be helping when the previous oral antibiotic was doing nothing.
Morning
She had a good night. SHe is awake alert and happy. Her lymph node feels smaller to me today. I'm guessing because of the IV antibiotics. I haven't talked to the Dr.'s yet today, but I'm fairly certain we will be moved to "the floor" today. The floor is better, it is out of PICU. A parent can stay in te room with the child overnight. And it means your not as sick.
Today is Tabitha's birthday. I don't have a vehicle here but I'm going to call my sister or ride front runner or something to make a quick trip home (maybe?!?!?).
All is well.
Today is Tabitha's birthday. I don't have a vehicle here but I'm going to call my sister or ride front runner or something to make a quick trip home (maybe?!?!?).
All is well.
PICU
Well we got up to picu. Tey ran a blood test to see if there was damage to the heart. (Because of her weird heart rhythm). It came back fine. So it doesn't look like there is damage to the heart.
So the other possibilities as far as her unusual heart rhythm are:
-high potassium (hers is a little high right now, so they are giving her lasix to make her urinate)
-that is just the way her rhythm is. (but they've never said anything about it before)
-swelling (inflamation around the heart) due to a virus
I'm guessing potassium and virus. Or maybe just virus.
Anyway she is doing really well. She looks good. She is awake and has been smiling.
We left the ER at 1:30 AM and finished taking to the Dr.'s at 2:30 AM. It's now almost 3 AM. I am waiting for all of her meds to get here so I make sure they are right and that she gets all of them.
The nurses scrounged me up a pull out bed so I can sleep here with her tonight. (Normally you can't spend the night by the patient in PICU).
We really need her meds to get here so that Ellie can get her sleeping pill. She won't go to sleep without it.
As a side note we are in the same bed space that she was in for a month and a half when she was 6 months old when she had botulism.
So the other possibilities as far as her unusual heart rhythm are:
-high potassium (hers is a little high right now, so they are giving her lasix to make her urinate)
-that is just the way her rhythm is. (but they've never said anything about it before)
-swelling (inflamation around the heart) due to a virus
I'm guessing potassium and virus. Or maybe just virus.
Anyway she is doing really well. She looks good. She is awake and has been smiling.
We left the ER at 1:30 AM and finished taking to the Dr.'s at 2:30 AM. It's now almost 3 AM. I am waiting for all of her meds to get here so I make sure they are right and that she gets all of them.
The nurses scrounged me up a pull out bed so I can sleep here with her tonight. (Normally you can't spend the night by the patient in PICU).
We really need her meds to get here so that Ellie can get her sleeping pill. She won't go to sleep without it.
As a side note we are in the same bed space that she was in for a month and a half when she was 6 months old when she had botulism.
Monday, May 3, 2010
Temperature Swings
So the pseudomonas infections I was talking about previously never really went away. They weren't getting worse, but they werent getting better.
Last weekend we ran out of her clonidine (medicine to regulate her autonomic nervous system...ie: heart rate and temperature). It has to be compounded and anyway we kept running into snags. So we went without it for a few days.
We finally got more medicine on last Wednesday.
Well Wednesday morning she had a fever of 102. (remember her normal is 96.5) We got her cooled down and we jsut figured it was because she hadn't had her medicine for a few days.
Friday night her temperature dropped to 90 and her heartrate to the low 40's. We got her warmed up. It took about 2 hours.
Sat night she dry-heaved twice. So we ahd to vent her. It doesn't necessarily mean she is sick it could just mean she has air in her tummy. She ahs had surgery so she can't reflux, but it also means that she can't burp.
Sat night we forgot to turn on her feeding pump overnight. (she ahs hypoglycemia-low blood sugar).
Today, Monday, when she got home from school she looked pale. So we took her temp. It was 95 on her forehead. SO a little cool, but not bad. (for her). We decided to stick her under the electric blanket to get a jump on it before it got bad. Well we hooked her up to the pulse ox which also gives you a heartrate. Her heartrate was 39-43. Usually with a temp of 95 her heartrate would not be that low. It only goes that low when her heartrate drops to 90 or below. So I took a rectal temp. It was 90. Not 95.
We tried warming her up a bit. Her heartrate wasn't coming up. THen her oxygen dipped. So We decided to take her to the ER.
We did not dare go all of the way to Primary's so we went to Ogden Regional. It was our first ER visit there. They were very fast. ANyway they did an EKG and got an IV placed. THey were unable to draw any blood. THey were going to do a bunch more tests, but I said what if we just get her stable enough to transport to Primary's.
They called Primary's and an ambulance was arranged.
When we got to Ogden Regional her temp (rectally) 92. By the time the ambulance got there it was up to 94 (ear).
THe ambulance people cranked up the heat for her and by the time we got to Primary's she was at 95 (ear).
She is feeling and looking much better now that she is warmed up. Se is now in the low 96's. Her heartrate is back up. She is off oxygen. SHe really looks pretty good.
So here's my prediction...I think that the infection she already had (lymph nodes, trach site and groin) has gotten worse.
With her previous hypothermia spells the Dr.'s predicted that she can't regulate her body temp very well and when she gets an infection that her body temp really gets out of whack.
But it could also be because we missed the few days of clonidine.
Well so far at primary's we have had an EKG, blood, urine and chest x-rays.
THe plan was to go to the floor, but the Dr. just told me that there are a few new things on her EKG so they will be sending her to PICU.
Last weekend we ran out of her clonidine (medicine to regulate her autonomic nervous system...ie: heart rate and temperature). It has to be compounded and anyway we kept running into snags. So we went without it for a few days.
We finally got more medicine on last Wednesday.
Well Wednesday morning she had a fever of 102. (remember her normal is 96.5) We got her cooled down and we jsut figured it was because she hadn't had her medicine for a few days.
Friday night her temperature dropped to 90 and her heartrate to the low 40's. We got her warmed up. It took about 2 hours.
Sat night she dry-heaved twice. So we ahd to vent her. It doesn't necessarily mean she is sick it could just mean she has air in her tummy. She ahs had surgery so she can't reflux, but it also means that she can't burp.
Sat night we forgot to turn on her feeding pump overnight. (she ahs hypoglycemia-low blood sugar).
Today, Monday, when she got home from school she looked pale. So we took her temp. It was 95 on her forehead. SO a little cool, but not bad. (for her). We decided to stick her under the electric blanket to get a jump on it before it got bad. Well we hooked her up to the pulse ox which also gives you a heartrate. Her heartrate was 39-43. Usually with a temp of 95 her heartrate would not be that low. It only goes that low when her heartrate drops to 90 or below. So I took a rectal temp. It was 90. Not 95.
We tried warming her up a bit. Her heartrate wasn't coming up. THen her oxygen dipped. So We decided to take her to the ER.
We did not dare go all of the way to Primary's so we went to Ogden Regional. It was our first ER visit there. They were very fast. ANyway they did an EKG and got an IV placed. THey were unable to draw any blood. THey were going to do a bunch more tests, but I said what if we just get her stable enough to transport to Primary's.
They called Primary's and an ambulance was arranged.
When we got to Ogden Regional her temp (rectally) 92. By the time the ambulance got there it was up to 94 (ear).
THe ambulance people cranked up the heat for her and by the time we got to Primary's she was at 95 (ear).
She is feeling and looking much better now that she is warmed up. Se is now in the low 96's. Her heartrate is back up. She is off oxygen. SHe really looks pretty good.
So here's my prediction...I think that the infection she already had (lymph nodes, trach site and groin) has gotten worse.
With her previous hypothermia spells the Dr.'s predicted that she can't regulate her body temp very well and when she gets an infection that her body temp really gets out of whack.
But it could also be because we missed the few days of clonidine.
Well so far at primary's we have had an EKG, blood, urine and chest x-rays.
THe plan was to go to the floor, but the Dr. just told me that there are a few new things on her EKG so they will be sending her to PICU.
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