So I called and left a msg for the Dr. filling in for Ellie's pediatrician. He called me back personally, which was very nice.
Even after I told him about the low heartrate he still felt like we were on a good course. He did not want to add oral antibiotics.
Which is fine, I just wanted to make sure.
I asked him if he thought I need to call the surgeons who will be working on her on Wed to let them know. He said it couldn't hurt. So I will do that tomorrow.
Monday, June 27, 2011
Culture results
The culture results came in today. Neither one is MRSA (antibiotic resistant-super bugs).
The nose sore grew serratia marcescens. And the ear was mixed flora with 3+yeast.
The Dr. on call said to continue the ear drops and the nose cream, but didn't feel that we needed to add an oral antibiotic. He was more concerned with the nose results than the ear results. It must be a worse bug?!?!?
I forgot to tell him that her heartrate has been low the last 2 days...so I will have to call him back.
The nose sore grew serratia marcescens. And the ear was mixed flora with 3+yeast.
The Dr. on call said to continue the ear drops and the nose cream, but didn't feel that we needed to add an oral antibiotic. He was more concerned with the nose results than the ear results. It must be a worse bug?!?!?
I forgot to tell him that her heartrate has been low the last 2 days...so I will have to call him back.
Sunday, June 26, 2011
Nose and Ear
From the previous post...the right ear did stop bleeding after another week or so of the new ear drops.
All last week she had a big white spot on her nose. She gets zits so I thought it was probably that. Her nose was also red all over. But I thought that was probably from her mask (bi-pap) rubbing her wrong. But it just didn't seem to be getting better after a few days. In fact on Wed her nose looked swollen (the outside of her nose). I was debating taking her to the Dr. But I still thought it was probably a zit and her mask.
Thurs when she came home from summer school her respite worker came to get me because there was stuff draining out of her left ear and running down her neck. It was a clear to light yellow fluid. Her other recent ear problems have all been her right ear...this was her left ear.
The respite worker laid her down on the couch with that ear up and within an hour or so her outer ear was filled with fluid. We cleaned it out with a cotton ball and it kept filling up every hour or two.
I called ENT to see whether to take her to her pediatrician or what they wanted me to do and to make sure that her ENT was going to be coming in during her surgery next Wed. They said that I could either do the cipro ear drops or I could take her in to her pediatrician. I decided to take her in so that he could culture the drainage.
I made a Dr. appt for Fri morning.
At the pediatrician he cultured both the ear fluid and also got a little drop of blood from the nose sore to culture. The results should be in today (Sunday). He is going to be out of town until Jul 5. So he left instructions for his colleagues what to do depending on what the culture comes back. He wanted us to do the cipro ear drops in the left ear and bactroban on her nose sore and surrounding skin. He thought the spot on her nose looked more like a localized infection than a zit. He thought if they come back as staph or something bad...they might not want to do surgery this Wed. We'll have to see what the culture says and then talk to the Dr.'s down at Primary's.
The ear drop don't seem to be helping so far. The cottonball I put in her ear at night (after the ear drops) is completely soaking and yellow in the morning (she is still draining a ton of fluid). Last night her heartbeat was irregular and her heartrate was between 58-75 (low). Her apnea monitor was going off a tone last night...at first for low heartrate...then for apnea (not breathing for 20 seconds---even though she had her bi-pap mask on). I must have gotten up 20 times during the night. Finally I took the apnea belt off and put it back on and that seemed to help a bit. So maybe it was just getting a bad reading on the apnea. But her heartrate was low because I checked it with the apnea monitor and the pulse ox.
When she is sick her heartrate and body temp drop. So I know she is sick. Her temperature was OK though. 95.8 F (which is normal for her).
She seems to be a little more regulated today. Her heart is more regular.
I think she is also constipated which never helps...I think her seizures are worse when she is constipated and I have heard this from other special needs moms too. She bit her lower lip several times yesterday, which seems to be a type of seizure she sometimes has. So her lip was really fat and swollen yesterday.
So this morning I started a bowel cleanout on her. This is her new cleanout program prescribed by Dr. O'Gorman (Of course in this case I just have to change the days around a bit since I'm starting Sun morning). She normally gets 10mL of lactulose and a suppository every morning anyway (when not doing a cleanout).
I hate doing these cleanouts they are such a mess and really stinky. But she needs them. I think I'm going to start doing them once a month so maybe it won't get to the point where she is having seizures and what-not.
All last week she had a big white spot on her nose. She gets zits so I thought it was probably that. Her nose was also red all over. But I thought that was probably from her mask (bi-pap) rubbing her wrong. But it just didn't seem to be getting better after a few days. In fact on Wed her nose looked swollen (the outside of her nose). I was debating taking her to the Dr. But I still thought it was probably a zit and her mask.
Thurs when she came home from summer school her respite worker came to get me because there was stuff draining out of her left ear and running down her neck. It was a clear to light yellow fluid. Her other recent ear problems have all been her right ear...this was her left ear.
The respite worker laid her down on the couch with that ear up and within an hour or so her outer ear was filled with fluid. We cleaned it out with a cotton ball and it kept filling up every hour or two.
I called ENT to see whether to take her to her pediatrician or what they wanted me to do and to make sure that her ENT was going to be coming in during her surgery next Wed. They said that I could either do the cipro ear drops or I could take her in to her pediatrician. I decided to take her in so that he could culture the drainage.
I made a Dr. appt for Fri morning.
At the pediatrician he cultured both the ear fluid and also got a little drop of blood from the nose sore to culture. The results should be in today (Sunday). He is going to be out of town until Jul 5. So he left instructions for his colleagues what to do depending on what the culture comes back. He wanted us to do the cipro ear drops in the left ear and bactroban on her nose sore and surrounding skin. He thought the spot on her nose looked more like a localized infection than a zit. He thought if they come back as staph or something bad...they might not want to do surgery this Wed. We'll have to see what the culture says and then talk to the Dr.'s down at Primary's.
The ear drop don't seem to be helping so far. The cottonball I put in her ear at night (after the ear drops) is completely soaking and yellow in the morning (she is still draining a ton of fluid). Last night her heartbeat was irregular and her heartrate was between 58-75 (low). Her apnea monitor was going off a tone last night...at first for low heartrate...then for apnea (not breathing for 20 seconds---even though she had her bi-pap mask on). I must have gotten up 20 times during the night. Finally I took the apnea belt off and put it back on and that seemed to help a bit. So maybe it was just getting a bad reading on the apnea. But her heartrate was low because I checked it with the apnea monitor and the pulse ox.
When she is sick her heartrate and body temp drop. So I know she is sick. Her temperature was OK though. 95.8 F (which is normal for her).
She seems to be a little more regulated today. Her heart is more regular.
I think she is also constipated which never helps...I think her seizures are worse when she is constipated and I have heard this from other special needs moms too. She bit her lower lip several times yesterday, which seems to be a type of seizure she sometimes has. So her lip was really fat and swollen yesterday.
So this morning I started a bowel cleanout on her. This is her new cleanout program prescribed by Dr. O'Gorman (Of course in this case I just have to change the days around a bit since I'm starting Sun morning). She normally gets 10mL of lactulose and a suppository every morning anyway (when not doing a cleanout).
Fri night
3 oz magnesium citrate
15 mL lactulose
Sat Morning
3 oz magnesium citrate
15 mL lactulose
If no stool then do a Suppository or if her normal schedule is a suppository on Sat morning then do one anyway.
Sat night
15 oz lactulose
Sun Morning
15 oz lactulose
Sun night
15 oz lactulose
I hate doing these cleanouts they are such a mess and really stinky. But she needs them. I think I'm going to start doing them once a month so maybe it won't get to the point where she is having seizures and what-not.
Thursday, June 9, 2011
More Dr.'s and surgery
So last Saturday her ear was still bleeding. I have an otoscope, but had not looked in her ear because of the staph...I didn't want to make it worse or spread it anywhere. On Sat I looked with the otoscope. Inside her ear just looked raw and bloody. Like if you fell down and scraped your knee, but inside her ear (that's the best way I can think to describe it). It was like a big open wound.
I started worrying that maybe the staph was eating away at her ear or something. So I decided I better take her in to the Dr.
Her Dad and I discussed whether to drive to Primary Children's ER or to go to instacare. We decided on instacare. I get there and the want me to drive her to her pediatrician's office (which is another 20 minutes away). I told them that her pediatrician doesn't work on Saturdays so I would be seeing a new Dr. there, so I might as well see a new Dr. here. They agreed to see her.
The Dr. was not very confident in her abilities with a child with multiple medical concerns. She said the bleeding was definitly not normal and didn't know why it wasn't stopping after being on ear drops and an oral antibiotic. She tried contacting the local ENT's and they never called her back. So after 30-45 minutes of waiting for a return call she (the Dr.) came in and said "Well, whatever you want to do...you can take her down to Primary's ER or follow up with her pediatrician on Monday or whatever you feel best about".
I'm thinking in my head...you're the Dr. tell me what to do. I really don't know how serious this is. Is her brain being eaten by staph or is she just healing?
I ask her "Did you try contacting the ENT on call at Primary Children's?" She says "no, we don't have the number". I say "662-1000".
That was a really lame excuse to say they didn't have the number, really she just didn't think of it.
Anyway, she says she'll try.
Within 5 minutes they get a call back from Primary's. She talks to the resident.
He says to call on Monday and make an appt. If I can't get in to see Dr. Park, then get a "resident appointment. If the resident needs backup, they can snag the Dr. to come in and take a peek."
Now I have been in this special needs business for almost 9 years and I have never heard of a "resident appointment". Why has no one ever told me about this? Normally if I need to get into a Dr I have to wait about 2-3 months, so if I need to see one more urgently I go to the Primary children's ER. So I guess something good came out of this whole trip.
So I called and got an appt for Wed. The resident came in I started telling him the story and before I finish he gets a page and says" I'm sorry, but I have to go". I couldn't believe it, it was very rude.
A few minutes later her normal ENT come in and we tell the story. He sucks some of the dried blood out. He said both tubes are in good position. He prescribes a different ear drop. He says if it doesn't stop bleeding by Monday to call again.
Now onto the surgery portion of this blog posting...
Ellie needs to have her baclofen pump replaced. The baclofen pump is a hockey puck sized device under her skin on the left side of her abdomen. She has tubing that runs under her skin around her left side into her spinal fluid. The pump delivers medicine (baclofen) continuously into her spinal fluid which helps her relax her muscles. The battery only lasts 5-6 years and hers is ready to be replaced. She had her first one placed in March of 2005. So the surgery is scheduled for later this month. She will need to be in the hospital from Wed-Sat morning.
I started worrying that maybe the staph was eating away at her ear or something. So I decided I better take her in to the Dr.
Her Dad and I discussed whether to drive to Primary Children's ER or to go to instacare. We decided on instacare. I get there and the want me to drive her to her pediatrician's office (which is another 20 minutes away). I told them that her pediatrician doesn't work on Saturdays so I would be seeing a new Dr. there, so I might as well see a new Dr. here. They agreed to see her.
The Dr. was not very confident in her abilities with a child with multiple medical concerns. She said the bleeding was definitly not normal and didn't know why it wasn't stopping after being on ear drops and an oral antibiotic. She tried contacting the local ENT's and they never called her back. So after 30-45 minutes of waiting for a return call she (the Dr.) came in and said "Well, whatever you want to do...you can take her down to Primary's ER or follow up with her pediatrician on Monday or whatever you feel best about".
I'm thinking in my head...you're the Dr. tell me what to do. I really don't know how serious this is. Is her brain being eaten by staph or is she just healing?
I ask her "Did you try contacting the ENT on call at Primary Children's?" She says "no, we don't have the number". I say "662-1000".
That was a really lame excuse to say they didn't have the number, really she just didn't think of it.
Anyway, she says she'll try.
Within 5 minutes they get a call back from Primary's. She talks to the resident.
He says to call on Monday and make an appt. If I can't get in to see Dr. Park, then get a "resident appointment. If the resident needs backup, they can snag the Dr. to come in and take a peek."
Now I have been in this special needs business for almost 9 years and I have never heard of a "resident appointment". Why has no one ever told me about this? Normally if I need to get into a Dr I have to wait about 2-3 months, so if I need to see one more urgently I go to the Primary children's ER. So I guess something good came out of this whole trip.
So I called and got an appt for Wed. The resident came in I started telling him the story and before I finish he gets a page and says" I'm sorry, but I have to go". I couldn't believe it, it was very rude.
A few minutes later her normal ENT come in and we tell the story. He sucks some of the dried blood out. He said both tubes are in good position. He prescribes a different ear drop. He says if it doesn't stop bleeding by Monday to call again.
Now onto the surgery portion of this blog posting...
Ellie needs to have her baclofen pump replaced. The baclofen pump is a hockey puck sized device under her skin on the left side of her abdomen. She has tubing that runs under her skin around her left side into her spinal fluid. The pump delivers medicine (baclofen) continuously into her spinal fluid which helps her relax her muscles. The battery only lasts 5-6 years and hers is ready to be replaced. She had her first one placed in March of 2005. So the surgery is scheduled for later this month. She will need to be in the hospital from Wed-Sat morning.
Friday, June 3, 2011
Upset (Stomach, not emotions)
The new antibiotic really seems to not agree with her stomach. The other day she was dry heaving. Her stools are very stinky and they have a gritty texture.
She is still having blood from her ear every day. We are continuing the ear drops.
I don't know. She was happy the first day or two on amoxicillan, but she hasn't been as happy since starting this new antibiotic.
She is still having blood from her ear every day. We are continuing the ear drops.
I don't know. She was happy the first day or two on amoxicillan, but she hasn't been as happy since starting this new antibiotic.
Wednesday, June 1, 2011
More blood
So yesterday and today her ear has started bleeding again. I called the Dr. yesterday afternoon and he said to give her the ear drops for another 7 days. He didn't seem concerned.
I asked him last time I was in at what point I should go see ENT again (due to her recurring ear infections and unconfirmed diagnosis as to whether or not her ear tubes are in place or not). He said it wasn't urgent but I could if I felt like it.
I think I'm starting to feel like it.
I asked him last time I was in at what point I should go see ENT again (due to her recurring ear infections and unconfirmed diagnosis as to whether or not her ear tubes are in place or not). He said it wasn't urgent but I could if I felt like it.
I think I'm starting to feel like it.
Saturday, May 28, 2011
Test results
So the reason the Dr. cultured the "snot" in her ear is because he thought it might be something bad like pseudomonas or something...
Well, it is...it is staph.
It is resistant to amoxicillan so they are switching to a different antibiotic and continuing the ear drops.
She hasn't had any more bloody noses since starting the antibiotic (amoxicillan). The Dr. thought she was getting blooding noses from them being so inflamed. She has been really happy the first 2 days of the amoxicillan, lots of smiles.
So we'll pick up the new antibiotic today.
We are in this really bad cycle of antibiotic...diarrhea...culturelle...constipation...hemmorroids...inflammation...pain...bowel cleanout...diarrhea...etc...we can't seem to get through a cycle and get back to being "regular" before it is time to start new antibiotics. (and yes, I do give her culturelle while on antibiotics).
She is always happier on antibiotics. We have been discussing with her allergist/immunologist a test he wants to run. He wants to do blood work, then inject her with dead pnemonia strains. Then do more bloodwork to see how her body reacts to the pnemonia. He thinks she might need to be on antibiotics all of the time. We were going to start the process last week, but when we went in I said that I thought she was getting sick, so I asked if we should wait. He said to wait 10 days after she feels better.
I am afraid with how often she goes on antibiotics she becoming more resistant and developing stronger bugs. But what can you do? She needs them as often as she needs them.
Well, it is...it is staph.
It is resistant to amoxicillan so they are switching to a different antibiotic and continuing the ear drops.
She hasn't had any more bloody noses since starting the antibiotic (amoxicillan). The Dr. thought she was getting blooding noses from them being so inflamed. She has been really happy the first 2 days of the amoxicillan, lots of smiles.
So we'll pick up the new antibiotic today.
We are in this really bad cycle of antibiotic...diarrhea...culturelle...constipation...hemmorroids...inflammation...pain...bowel cleanout...diarrhea...etc...we can't seem to get through a cycle and get back to being "regular" before it is time to start new antibiotics. (and yes, I do give her culturelle while on antibiotics).
She is always happier on antibiotics. We have been discussing with her allergist/immunologist a test he wants to run. He wants to do blood work, then inject her with dead pnemonia strains. Then do more bloodwork to see how her body reacts to the pnemonia. He thinks she might need to be on antibiotics all of the time. We were going to start the process last week, but when we went in I said that I thought she was getting sick, so I asked if we should wait. He said to wait 10 days after she feels better.
I am afraid with how often she goes on antibiotics she becoming more resistant and developing stronger bugs. But what can you do? She needs them as often as she needs them.
Friday, May 27, 2011
Ears and Nose-Blood and Gunk
So Sun morn She woke up with a bloody right nostril. We got the bleeding stopped. It bled a few more times that day (but not bad).
We started spraying saline up both nostrils as often as we could remember, turned up her bi-pap humidity and turned on her room humidifier.
Monday morning she woke up with a bloody right nostril.
Tues afternoon her right ear was filled with gunk. Like boogers, but in her ear. There was also alot of old dried blood (I'm assuming from when her ear was bleeding a while ago). I made a Dr. appt for Wed afternoon.
Another bloody nose Wed morning.
When we went to the Dr. on Wed he cultured the snot-like substance from her ear. Started her on amoxicillan and ear drops. We should hear back on the culture today. I called to check on it and the results weren't final yet.
We started spraying saline up both nostrils as often as we could remember, turned up her bi-pap humidity and turned on her room humidifier.
Monday morning she woke up with a bloody right nostril.
Tues afternoon her right ear was filled with gunk. Like boogers, but in her ear. There was also alot of old dried blood (I'm assuming from when her ear was bleeding a while ago). I made a Dr. appt for Wed afternoon.
Another bloody nose Wed morning.
When we went to the Dr. on Wed he cultured the snot-like substance from her ear. Started her on amoxicillan and ear drops. We should hear back on the culture today. I called to check on it and the results weren't final yet.
Thursday, May 19, 2011
New tab at top
I have added a new tab at the top of things that Ellie Needs/Wants. If only money grew on trees!!!
Wednesday, May 4, 2011
Biting lip
She has started biting her bottom lip again. It is swollen and bloody. I don't know why she does this?!?!?!
Also she has a loose tooth. So far she has never swallowed one, but I'm sure she probably will someday.
She is also drooling a lot. (unusual for her)
I think her nose might be stuffy. She uses zyrtec twice a day and flonase nasal spray to try and take down the swelling inside her nose. Her nostrils are ALWAYS swollen.
I switched last night from her full face mask to just the one that covers her nose because she got a huge sore spot across the bridge of her nose. If she moves during the night the mask pushes on spots and causes sore spots. We never used to have this problem, but lately is is happening more and more frequently. By switching masks it puts pressure and different parts of her face.
Also she has a loose tooth. So far she has never swallowed one, but I'm sure she probably will someday.
She is also drooling a lot. (unusual for her)
I think her nose might be stuffy. She uses zyrtec twice a day and flonase nasal spray to try and take down the swelling inside her nose. Her nostrils are ALWAYS swollen.
I switched last night from her full face mask to just the one that covers her nose because she got a huge sore spot across the bridge of her nose. If she moves during the night the mask pushes on spots and causes sore spots. We never used to have this problem, but lately is is happening more and more frequently. By switching masks it puts pressure and different parts of her face.
Cast off
We were 3.5 weeks into the last serial casting on her right arm. Her seizures were phenomenolly bad. She was having a seizure every 15-20 minutes. So I took the cast off at home.
Serial casting is done with a soft cast material. It looks and feels like a regular cast but it is a little bit squishy. You can unwrap it at home without having to go to the ER and have it cut off. You cannot put it back on.
Her seizures went down almost immediately.
Her hand was very swollen and puffy for 4 or so days. She had petted a snake at school, so we thoguht there was a remote possibility that she was allergic to snakes. But I really didn't think so because it was swollen before she touched the snake. Finally I called the Dr. He asked if it was red, painful or getting worse. I said no. He said it would go down on it's own. He just said to elevate it. I was like, "duh, I should have thought of that". Anyway we elevated it for 2 days and it went down to normal.
Serial casting is done with a soft cast material. It looks and feels like a regular cast but it is a little bit squishy. You can unwrap it at home without having to go to the ER and have it cut off. You cannot put it back on.
Her seizures went down almost immediately.
Her hand was very swollen and puffy for 4 or so days. She had petted a snake at school, so we thoguht there was a remote possibility that she was allergic to snakes. But I really didn't think so because it was swollen before she touched the snake. Finally I called the Dr. He asked if it was red, painful or getting worse. I said no. He said it would go down on it's own. He just said to elevate it. I was like, "duh, I should have thought of that". Anyway we elevated it for 2 days and it went down to normal.
Seizures are gone
So for a few months Ellie's seizures were really bad. We met with many specialists ran a bunch of tests and couldn't figure it out.
She has been on so many seizure meds over the years they just don't think meds will help. Although there is a brand new med that works differently than all the others that we thought about trying. Anyway, we were about ready to start the ketogenic diet (high protein and fat, low carb) which helps about 80% of people with their seizures.
I mentioned that we might be starting the keto diet to her dietician to see if she thought it would be safe with her hypoglycemia, low calories, etc... She thought it would be fine. But she mentioned that another Mom thought that vitamin D helped their child's seizures.
Her seizures all started getting worse around the time that they stopped making the cal-mag-zinc that she had been getting for years. THen we tried Cal-Mag (different brand) and that was awful. Diarrhea and seizures galore.
I asked if there was a brand of liquid calcium she would recommend. She said the only one she knew of was Wellesse at Costco or Walmart. It has Calcium and Vitamin D. So we tried it. We give the normal dose of 15 mL per day. But we give 7.5 in the morning and 7.5 at night.
At the same time we started the Wellesse brand the dietician started having us add an amino acid (protein) powder to her daily formula.
Well her seizures are now almost gone. She might have 1 or possible 2 per day. But it is drastically/dramatically better. Previously she was having upwards of 6-10 per day. And they were big and bad.
So we don't know if it was the New calcium, the Vitamin D, or the amino acid, but hoo-ray!!!
She has been on so many seizure meds over the years they just don't think meds will help. Although there is a brand new med that works differently than all the others that we thought about trying. Anyway, we were about ready to start the ketogenic diet (high protein and fat, low carb) which helps about 80% of people with their seizures.
I mentioned that we might be starting the keto diet to her dietician to see if she thought it would be safe with her hypoglycemia, low calories, etc... She thought it would be fine. But she mentioned that another Mom thought that vitamin D helped their child's seizures.
Her seizures all started getting worse around the time that they stopped making the cal-mag-zinc that she had been getting for years. THen we tried Cal-Mag (different brand) and that was awful. Diarrhea and seizures galore.
I asked if there was a brand of liquid calcium she would recommend. She said the only one she knew of was Wellesse at Costco or Walmart. It has Calcium and Vitamin D. So we tried it. We give the normal dose of 15 mL per day. But we give 7.5 in the morning and 7.5 at night.
At the same time we started the Wellesse brand the dietician started having us add an amino acid (protein) powder to her daily formula.
Well her seizures are now almost gone. She might have 1 or possible 2 per day. But it is drastically/dramatically better. Previously she was having upwards of 6-10 per day. And they were big and bad.
So we don't know if it was the New calcium, the Vitamin D, or the amino acid, but hoo-ray!!!
Tuesday, April 5, 2011
Another infection
She has another yeast infection (red bum, itching and discharge). Antibiotics are helping.
She has been a little congested this weekend. Nothing bad.
She keeps her arms up and tucked in close to her chest. After she gets botox and phenol injections in her arms and hands they do a series of casts on her arms to stretch them out. She is on week 2 of serial casting on her right arm. THen each week as long as she is gaining 5 degrees they put on a new cast to stretch it a little more. THe first week it was purple, this week it is red. The first 2 days seem to be painful, but after that she does Okay.
She also got some new arm splints/braces to wear at night to stretch out her arms while she is sleeping.
She has been a little congested this weekend. Nothing bad.
She keeps her arms up and tucked in close to her chest. After she gets botox and phenol injections in her arms and hands they do a series of casts on her arms to stretch them out. She is on week 2 of serial casting on her right arm. THen each week as long as she is gaining 5 degrees they put on a new cast to stretch it a little more. THe first week it was purple, this week it is red. The first 2 days seem to be painful, but after that she does Okay.
She also got some new arm splints/braces to wear at night to stretch out her arms while she is sleeping.
Subscribe to:
Posts (Atom)