Ellie was very naughty last night and stayed awake until 4 AM. I think I better put her in time out when she wakes up.
Yesterday was uneventful. Last night was uneventful.
They will hear the official reading of the sleep study this morning. So far they opted to not change her settings.
We did go back down on her onfi dose (seizure med) that we had raised last week. If we wanted to go even lower...the neurologist recommended taking off 5 mg per week. She said she would keep it because of her underlying potential for seizures even if we aren't seeing them physically. (Since the eye bouncing and desats they say are NOT seizures). We'll see. I should probably meet with her regular neurologist and see what he says. We tried probably 10 different seizure meds when she was little and none helped. Then we went years with no seizure meds at all. Not that she wasn't having seizures...but for every new seizure med you try, the chance of finding one that will work goes down significantly. So it was highly unlikely that we would find one that would help. Then onfi was recently FDA approved, so we decided to try it. It has been used in Canada and Europe for years. I do think it helped with the night-time desats. Which is confusing because if they are not seizures, why would it help? I asked about other side effects of onfi thinking maybe we were helping something else without meaning to. But the only side effect is lethargy. I don't see how that could decrease her desats unless she needs to be more sedated for the bipap to open up her airway.
I have not spoken with her neurologist about it to see if they think it would help with Ellie's type of seizure activity, but I am highly interested in the new cannabais oil (as are lots and lots of parents with kids with seizures). It has shown great success in controlling pediatric seizures. It is made from marjuana, which turns everyone against it before they know anything about it. Here in Utah, the oil is called "alepsia". It will NOT cause hallucinations and can NOT be addictive. It contains less THC (which is the part that give a "high") than hemp which can already be purchased legally in Utah (hemp oil and hemp lotion). Cannabais oil is already legal in Colorado and 20 other states. Utah would also have to legalize growing marjuana since the FDA still will not allow it to be shipped across state borders. Here is an article from the Salt Lake Tribune about alepsia http://www.sltrib.com/sltrib/news/57118270-78/utah-marijuana-hemp-colorado.html.csp
I think (cross fingers) (knock on wood) that we may be able to come home today. With basically no new information and no changes. Whew, good thing we spent the last 6 days inpatient right before Christmas. Here is the knowledge we are coming away with...#1) her ear infection was not gone and is now worse on the left #2) her eye bouncing and desats are not seizures which means they are probably obstructive sleep apnea which means we can go down on her seizure med to doses prior to last week when we raised it #3) Our new plan for both at home and in the hospital for the desats will be...when she drops her oxygen sats and her chest is not rising and falling we will remove the bipap, bag her with oxygen, once her sats come up we will try putting the bipap back on her. In the hospital if this does not work they will then call a code blue and intubate her (but they will try putting bipap back on first). #4) I probably need to meet with neurology and pulmonology (Sleep Dr.) and possibly have another sleep study with the hopes that she would desat and they could adjust her bipap settings. #5) Neurology said they would only use emergency seizure meds if they are causing concerning vitals (low oxygen, heartrate) which so far has been never for Ellie, she does not drop her sats with seizures (except the night-time desats which are apparently now not seizures).
I guess that is more information than I thought, so maybe it was not a fruitless stay after all.
It will be good to get home and START Christmas shopping. (I am exagerating just a bit...I have a few small trinkets...but definitely have the majority left to do.). It's a good thing I excel at procrastinating big projects, that is when I do my best work after all.
Friday, December 20, 2013
Thursday, December 19, 2013
Sleep study
Last night was her sleep study. She had 1 time that her o2 dropped to 80, but her chest was still rising and falling, so it was not one of her regular scary desats. Other than that she had no episodes. SO basically it was fruitless.
Insurance will only pay for 1 sleep study per year. (Although it may be billed differently if she is inpatient...I'm not sure). So potentially we could do another one in January I think.
I think they have no options left to explore, so we may get to come home in a day or two.
A few new options I have come up with are...
Raising her onfi (seizure med) last week could have affected her obstructive sleep apnea by relaxing her airway.
I believe she is getting a higher dose of baclofen now (orally) since taking out the baclofen pump. I believe this because #1) Physical therapy says she has gained 20 degrees in her elbows, #2) this may explain her tongue lolling out. So a higher dose of baclofen could also contribute to obstructive sleep apnea by relaxing her airway.
Wednesday, December 18, 2013
News
You know I usually follow the rule..."no news is good news"...well in this case, I didn't follow that rule. It was a rough day Monday followed by an even rougher night. I have been too overwhelmed to post, but I will try to catch up now. Elie actually isn't in that bad of shape...it has just been emotional for me.
Monday morning after they had a chance to read the EEG, the neurologist came by. She said that the night time desats WERE NOT seizures and the vertical nystagmis WERE NOT seizures...O-KAY?!?!?! And yet she suggested adding more seizure meds. If they are not seizures, then what are they? Why would we add seizure meds if they are not seizures? Why would the onfi (the seizure med she has already been taking that has helped her have less of these desats) help if they are not seizures?
She suggested that it may be pressure in her brain and that we may need talk to neurosurgery. The team was not convinced, so they did not order it.
ENT took her down to their clinic and suctioned out her ears, cultured the left one and looked at her sinus' and cultured it as well. The small amount of drainage from the sinus' was clear and there was not a lot of it. So they are now unclear if she actually has a sinus infection and think it may just be some stuff left over from her cold last week. They stopped the augmentin. But still wanted to do the afrin and some saline spray also (both in her nose). The ears, they wanted to continue ciprodex eardrops for 7 days.
It jus all seemed like very conflicting information. Looking back I can't even remember why it was such a rough day for me...but it was.
Monday night I went home to have Family Night and decorate the tree and then afterwards order all of our Christmas stuff from Amazon.
Before I left I explained (like I always do) to the nurse about her desats and that they are normal for her. Yes they are scary, yes I wish they wouldn't happen, but yes, they do. You just have to wait a few minutes and she will start breathing again.
In the middle of online shopping we got a phone call from the hopsital saying they were having an emergency with Ellie. She had desatted into the 20's and were bagging her (forcing breaths of air into her lungs) and were going to intubate her (put a breathing tube in her mouth) and then move her to ICU.
Jason and I arranged for immediate childcare at home and drove together down to the hospital as quickly as we could.
When we got here she was intubated in ICU. She was starting to wake up a bit from the paralytics and moving her tongue trying to get the breathing tube out.
We manged to track down someone who was actually there when the event happened. The respiratory therapist was in the room adjusting her mask when the desat started. She immediately pushed the code blue button (she did not give her few minutes like we usually do) and started bagging. This would be what you would do normally, but usually if I am there in the room I can get them to hold off and wait it out. Because I wasn't there, it sounds like things escalated quickly. Her sats came up quickly with the bagging, but then they would pause bagging to see if she would start breathing on her own and she wouldn't, so that's when they decided they needed to intubate.
Well, normally we handle things differently. We do not bag her (although we may start since it seems to bring her sats up more quickly). We leave the bi-pap on and wait it out and the bipap is still on her once the episode is done. We know that she "rides" the bi-pap, meaning...she puts forth no effort to breathe once the bi-pap is on. She does not initiate breaths and she does not breathe more than the machine delivers to her. That is why she has a "back-up rate". The machine gives her 22 breaths per minute no matter what.
So when they stopped bagging and expected her to breath on her own...she is not going to do it. She has had a sleeping pill and she is zonked, it is her time to take a break and sleep...not breathe.
So really...as scary as the phone call and drive down here were...I think it was one of her normal desats and they reacted differently than we do at home. Maybe we should install a code blue button at home...that would spice things up! But then again we would be pushing it 1-3 times per night.
The desats are worse in the winter, worse when she is sick, and she almost always has a desat between 1 and 3 AM.
Jason and I spent the remaining few hours of the night in her ICU room trying to sleep.
The next day (Tuesday) the ICU Dr.'s mentioned multiple times that she may need a trach (hole in neck that we would hook up to ventilator at night) or that her brain cannot keep up with her body, now that she is getting older and bigger.
To adresss the trach...we have been there, done that. It is hard. Granted this time we wouldn't be lugging a ventilator around with us, but a trach is really hard. It is one of the hardest things we have had to do with Ellie. We would really really prefer not to go there. We will if we have to...but do we really have to? Let's explore other options.
As far as her brain not keeping up...I hate it when Dr.'s say this. When ever they can't figure something out, this is what they say. We have been hearing this since she was 6 months old. We get it. We know she doesn't have a lot of brain matter. We know at some point this may be the case, but you don't give up and say "go home and die". You try to find answers and help Ellie for as long as you can.
I was under the impression that we were near the top of her bi-pap settings already and if we went up any more we would have to go to a trach. I asked pulmonology if this were the case and he said no. She is at 14/7 and he said you can go up to 20ish. So we still have a ways to go if we need to. That sounds encouraging, it at least sounds like an option. Pulmonology thought that it sounded like obstructive sleep apnea. We already know that she has obstructive (something blocking airway...tongue, throat collapsing, etc...) and central (brain forgets to breathe) sleep apnea. That is why she has the bi-pap.
**Side note for myself...I really like her current pulmonologist, but if I ever have to switch I liked the on call one we saw too...Dr. Ochida (something like that).
Several years ago when the desats started I went to her pediatrician, pulmonology and neurology about the problem. Neurology did a 3 day EEG and said that some of the deats were definitely seizures and some he couldn't tell. That is wehen we started the onfi and it did help.
Several years ago pulmonology acted like...well that just isn't possible (the desats). Well, maybe so, but that is what is happening. We did a sleep study and she felt like her settings were fine where they were. I asked if we could raise the settings just for fun to see if it would help with the desats. She said sure. We raised them one step. It did not seem to help, so we went back down. Maybe we should have gone up even more.
Yesterday (Tues) they were able to extubate (take the breathing tube out). She had no problems.
They also started another EEG yesterday.
Last night she had no desat episodes. She did have several times that her respirations dropped from 22 (the number of breaths the bipap gives her) to 7-9 breaths per minutes. But her oxygen stayed high. Since being in the hospital, I have noticed that when the machine drops to 0 breaths per minute, that is followed by her desat episodes. Our machine at home does not monitor breaths per minute, only heartrate and oxygen.
Tonight (Wed) they are going to do an overnight sleep study with full EEG. They will also be trying to see if they can adjust her bipap setting so she is not desatting anymore. I hope they are successful, we would all get a much better nights sleep and they might even be able to stop pushing the code blue button while she is inpatient...wouldn't that be AWESOME!
She is really doing quite well. She was awake until 4 PM yesterday (Tues) and has been awake so far today.
Monday morning after they had a chance to read the EEG, the neurologist came by. She said that the night time desats WERE NOT seizures and the vertical nystagmis WERE NOT seizures...O-KAY?!?!?! And yet she suggested adding more seizure meds. If they are not seizures, then what are they? Why would we add seizure meds if they are not seizures? Why would the onfi (the seizure med she has already been taking that has helped her have less of these desats) help if they are not seizures?
She suggested that it may be pressure in her brain and that we may need talk to neurosurgery. The team was not convinced, so they did not order it.
ENT took her down to their clinic and suctioned out her ears, cultured the left one and looked at her sinus' and cultured it as well. The small amount of drainage from the sinus' was clear and there was not a lot of it. So they are now unclear if she actually has a sinus infection and think it may just be some stuff left over from her cold last week. They stopped the augmentin. But still wanted to do the afrin and some saline spray also (both in her nose). The ears, they wanted to continue ciprodex eardrops for 7 days.
It jus all seemed like very conflicting information. Looking back I can't even remember why it was such a rough day for me...but it was.
Monday night I went home to have Family Night and decorate the tree and then afterwards order all of our Christmas stuff from Amazon.
Before I left I explained (like I always do) to the nurse about her desats and that they are normal for her. Yes they are scary, yes I wish they wouldn't happen, but yes, they do. You just have to wait a few minutes and she will start breathing again.
In the middle of online shopping we got a phone call from the hopsital saying they were having an emergency with Ellie. She had desatted into the 20's and were bagging her (forcing breaths of air into her lungs) and were going to intubate her (put a breathing tube in her mouth) and then move her to ICU.
Jason and I arranged for immediate childcare at home and drove together down to the hospital as quickly as we could.
When we got here she was intubated in ICU. She was starting to wake up a bit from the paralytics and moving her tongue trying to get the breathing tube out.
We manged to track down someone who was actually there when the event happened. The respiratory therapist was in the room adjusting her mask when the desat started. She immediately pushed the code blue button (she did not give her few minutes like we usually do) and started bagging. This would be what you would do normally, but usually if I am there in the room I can get them to hold off and wait it out. Because I wasn't there, it sounds like things escalated quickly. Her sats came up quickly with the bagging, but then they would pause bagging to see if she would start breathing on her own and she wouldn't, so that's when they decided they needed to intubate.
Well, normally we handle things differently. We do not bag her (although we may start since it seems to bring her sats up more quickly). We leave the bi-pap on and wait it out and the bipap is still on her once the episode is done. We know that she "rides" the bi-pap, meaning...she puts forth no effort to breathe once the bi-pap is on. She does not initiate breaths and she does not breathe more than the machine delivers to her. That is why she has a "back-up rate". The machine gives her 22 breaths per minute no matter what.
So when they stopped bagging and expected her to breath on her own...she is not going to do it. She has had a sleeping pill and she is zonked, it is her time to take a break and sleep...not breathe.
So really...as scary as the phone call and drive down here were...I think it was one of her normal desats and they reacted differently than we do at home. Maybe we should install a code blue button at home...that would spice things up! But then again we would be pushing it 1-3 times per night.
The desats are worse in the winter, worse when she is sick, and she almost always has a desat between 1 and 3 AM.
Jason and I spent the remaining few hours of the night in her ICU room trying to sleep.
The next day (Tuesday) the ICU Dr.'s mentioned multiple times that she may need a trach (hole in neck that we would hook up to ventilator at night) or that her brain cannot keep up with her body, now that she is getting older and bigger.
To adresss the trach...we have been there, done that. It is hard. Granted this time we wouldn't be lugging a ventilator around with us, but a trach is really hard. It is one of the hardest things we have had to do with Ellie. We would really really prefer not to go there. We will if we have to...but do we really have to? Let's explore other options.
As far as her brain not keeping up...I hate it when Dr.'s say this. When ever they can't figure something out, this is what they say. We have been hearing this since she was 6 months old. We get it. We know she doesn't have a lot of brain matter. We know at some point this may be the case, but you don't give up and say "go home and die". You try to find answers and help Ellie for as long as you can.
I was under the impression that we were near the top of her bi-pap settings already and if we went up any more we would have to go to a trach. I asked pulmonology if this were the case and he said no. She is at 14/7 and he said you can go up to 20ish. So we still have a ways to go if we need to. That sounds encouraging, it at least sounds like an option. Pulmonology thought that it sounded like obstructive sleep apnea. We already know that she has obstructive (something blocking airway...tongue, throat collapsing, etc...) and central (brain forgets to breathe) sleep apnea. That is why she has the bi-pap.
**Side note for myself...I really like her current pulmonologist, but if I ever have to switch I liked the on call one we saw too...Dr. Ochida (something like that).
Several years ago when the desats started I went to her pediatrician, pulmonology and neurology about the problem. Neurology did a 3 day EEG and said that some of the deats were definitely seizures and some he couldn't tell. That is wehen we started the onfi and it did help.
Several years ago pulmonology acted like...well that just isn't possible (the desats). Well, maybe so, but that is what is happening. We did a sleep study and she felt like her settings were fine where they were. I asked if we could raise the settings just for fun to see if it would help with the desats. She said sure. We raised them one step. It did not seem to help, so we went back down. Maybe we should have gone up even more.
Yesterday (Tues) they were able to extubate (take the breathing tube out). She had no problems.
They also started another EEG yesterday.
Last night she had no desat episodes. She did have several times that her respirations dropped from 22 (the number of breaths the bipap gives her) to 7-9 breaths per minutes. But her oxygen stayed high. Since being in the hospital, I have noticed that when the machine drops to 0 breaths per minute, that is followed by her desat episodes. Our machine at home does not monitor breaths per minute, only heartrate and oxygen.
Tonight (Wed) they are going to do an overnight sleep study with full EEG. They will also be trying to see if they can adjust her bipap setting so she is not desatting anymore. I hope they are successful, we would all get a much better nights sleep and they might even be able to stop pushing the code blue button while she is inpatient...wouldn't that be AWESOME!
She is really doing quite well. She was awake until 4 PM yesterday (Tues) and has been awake so far today.
Monday, December 16, 2013
Not status
Thankfully she was not in status (ongoing seizure) yesterday. Status is bad, bad, bad. I know 2 kiddos that have died in status. I was really worried when her eyes were not constricting and they were worried about status.
Her eyes seem fine today. Maybe she got too much ativan.
Once they determined that she was not in status, they moved her to the floor (out of ICU).
The ENT resident came by last night and looked with a tool through her nostrils to the back of her throat, she does not have stuff draining from the sinuses. She still thought she has a sinus infection (due to the CT). She recommended started afrin nasal spray 3 sprays, 3 times a day for 3 days and starting augmentin...but she needed to check with her attending. She also said that her ears looked good, but she could see some drops still sitting in there.
A different set of ENT residents came by this morning and said her ears are still draining. They said her left ear is worse. I didn't even notice it...but she does have some bloody fluid coming out of her left ear this morning. I asked how they could tell it was drainage and not drops (since the resident the night before said the opposite) and he said they looked differently. So I don't know if the drainage changed since last night, or if residents don't know what they are talking about.
It is obviously draining since there is bloody fluid coming out.
Maybe the problem is the ears, not the sinus'.
I would like to talk to an actual ENT Dr. (attending).
You know how I feel about teaching hospitals...grrrrrr.
She had a BOATLOAD of seizures last night. At least 4-5 desat seizures. The lowest I saw her o2 was in the 60's and each episode lasted about 2-3 minutes. Then this morning I think she was doing her vertical nystagmis (eyeball bouncing) a little bit, but it stopped...so I'm not 100% sure that was a seizure.
Her eyes seem fine today. Maybe she got too much ativan.
Once they determined that she was not in status, they moved her to the floor (out of ICU).
The ENT resident came by last night and looked with a tool through her nostrils to the back of her throat, she does not have stuff draining from the sinuses. She still thought she has a sinus infection (due to the CT). She recommended started afrin nasal spray 3 sprays, 3 times a day for 3 days and starting augmentin...but she needed to check with her attending. She also said that her ears looked good, but she could see some drops still sitting in there.
A different set of ENT residents came by this morning and said her ears are still draining. They said her left ear is worse. I didn't even notice it...but she does have some bloody fluid coming out of her left ear this morning. I asked how they could tell it was drainage and not drops (since the resident the night before said the opposite) and he said they looked differently. So I don't know if the drainage changed since last night, or if residents don't know what they are talking about.
It is obviously draining since there is bloody fluid coming out.
Maybe the problem is the ears, not the sinus'.
I would like to talk to an actual ENT Dr. (attending).
You know how I feel about teaching hospitals...grrrrrr.
She had a BOATLOAD of seizures last night. At least 4-5 desat seizures. The lowest I saw her o2 was in the 60's and each episode lasted about 2-3 minutes. Then this morning I think she was doing her vertical nystagmis (eyeball bouncing) a little bit, but it stopped...so I'm not 100% sure that was a seizure.
Sunday, December 15, 2013
Status
This status is from 2 PM today (Sunday)
She is starting to wake up. Her eyes are not constricting very quickly. They are worried that she is, or may go into status (ongoing seizures). They are going to do an eeg for 24 hours. They are also going to give her phosphenetoin for a few days to ward off seizures (they gave her a dose of it last week...and another today). I'm not too worried except for the eyes staying dilated.
She is starting to wake up. Her eyes are not constricting very quickly. They are worried that she is, or may go into status (ongoing seizures). They are going to do an eeg for 24 hours. They are also going to give her phosphenetoin for a few days to ward off seizures (they gave her a dose of it last week...and another today). I'm not too worried except for the eyes staying dilated.
Now a more recent update..
She has still been sleepy all day. But she is responding (she wasn't this morning).
She has been smacking her tongue all day...I have no idea what she is trying to say. I don't think it is a seizure because she can stop when I talk to her. Her eyes seem to be a little better.
Everyone seems concerned about the seizures, when I keep telling them that the seizures increase when she is sick...they need to look for the cause, not just treat the symptom. I think they are better at that on the floor, than in ICU.
Vitals have been good. She is doing good. We'll see what the EEG says.
We are in the ICU
She is sleepy, but responsive. Whereas this morning she was sleepy and unresponsive.
News from the nurse
I can't remember how far I got in my last post so some of this might be a repeat...
She desatted when we first got here into the 30's.
Then she was super sleepy (from the ativan). So I asked to put her on bi-pap to give her a break.
Then they weren't sure whether to put her in ICU or on the floor.
She had another desat episode or 2, but only into the 70's.
She started waking up and immediately went in to a seizure. It was another vertical nystagmis seizure. They gave her phosphenetoin (like they did last week). The seizure stopped after an hour.
The nurse said that they see either a sinus infection or "thickening" on her sinus' (from the head CT). But ventricles (hydrocephalus) and x-rays (shunt tubing and lungs) look good. So, I haven't heard from the Dr., but if this is true, this may be good and/or bad news...
If it is a sinus infection, I am assuming it will grow out resistant pseudemonas. That might be bad because they might have to give her the antibioitc with the harmful side effects. Maybe they could go into the OR and clean out the sinus to try and get rid of the infection?!?!?!?!
The good news is, we may have an answer. Not knowing and feeling out of control is one of the most difficult things. And (possibly) this may be why she has been lolling her tongue out...maybe it means sinus infection.
This last week
Infectious disease called with the sensitivities for the culture from the ear drainage (that came back as resistant pseudomonas). Basically they have one option...an antibioitc that they rarely use because it causes liver or kidney dmage (I can't remember which).
They wanted to hold off (for obvious reasons) and see if she gets better or worse. So I just kept giving eardrops...hoping that they might help, even though infectious disease did not seem to think it would help.
Yesterday (Sat) she had a long seizure. It was the same kind she had last week (just her eyeballs bouncing up and down (called vertical nystagmis). In the midst of it we called the on-call neurlologist and ended up giving two separate doses of ativan. The seizure stopped after about an hour and we were able to avoid a trip to the hospital.
I called and made an appointment with her pediatrician to look at her ears on Monday. On Monday I was going to call and wriggle my way in to ENT sometime this week. They had tossed around the idea (while she was inpatient last week) of removing the ear tubes. Bacteria likes to stick to any foreign body. So by removing the tubes they may be able to help get rid of the bacteria.
I figured the long seizure Sat morning must be caused by her ears still being bad.
During the night (at 3 AM) she had a seizure where she dropped her O2 to the low 60's for about 3 mintues. I went back to bed and then about 10 minutes later I heard her cry out. This is TOTALLY uncharacteristic of Ellie. #1) To cry...if she cries, you know it is really bad pain #2) for me to hear her cry from the other room...her cries are often silent.
I went in and she was having another eyeball bouncing seizure. When she was still seizing 10 minutes later, I gave her "rescue meds" (Ativan to stop the seizure). 10 minutes later the seizure had not stopped, so I gave her a second dose. The seizure stopped after about 30 minutes total (not include the oxygen desat).
I watched her for another 15 minutes to make sure it didn't start back up. And thought we were in the clear. That is when she started crying a lot more.
School said she cried twice on Fri and she cried once on Sat.
I gave her ibuprofen, but the crying continued. I climbed in bed with her to comfort her. The crying continued. It seemed that particularly when I would touch her face/ear area she would cry more. Finally I promised her I would take her to the hospital.
I debated calling the ambulance, or driving the 45 minutes myself since I was slightly concerned about her not breathing/having low oxygen since I gave her 2 doses of ativan. I decided we could make it, so I drove her. She did fine on the way down here (to Primary Children's ER). I did put oxygen and a pulse ox (oxygen monitor) on her to be safe.
When we got into the ER and they transferred her to the bed she had another desat (possible seizure??) where she dropped into the 30's. That got everyone hopping! It lasted about 2 minutes.
We had her only on 1 liter of oxygen for a few hours, then it seemed like she was a little more sleepy, so I asked to have her put on her bi-pap to give her a break.
Here are the results so far, from the tests they have run. The ER dr. said her ears actually look good. He is very surprised to hear that she had a resistant pseudemonas last week. Head CT and shunt series (x-rays) (both looking at shunt) both look good. CRP (level of inflammation) was great. Electrolytes looked good. Platelettes and white blood count were low...but not alarmingly terrifyingly low. They said it could be a bone marrow something or other. But they were not terribly concerned.
Here comes the funny part...so the ER Dr. says "Well, we'll leave it up to you if you want to go home or stay." I said "Stay because something is going on and if we go home, we will be back tomorrow."
So then the floor Dr.'s (the inpatient Dr.'s) come down and are worried about putting her on the floor (instead of ICU) because she is so sleepy and is on bi-pap. I tell them she was doing fine on oxygen I just wanted to give her a break, so I asked to put the bi-pap on. But they are still concerned that they cannot arouse her. I say, "Well, she had 2 doses of ativan, has been up since 3 and was cold when we got here (so we had to warm her up)".
I just think it is funny that they were willing to send us home, and then a few minutes later are debating putting her in ICU.
They are going to give her ritalin (that she takes every morning to wake her up) and see if they can at least arouse her. (She is SUPER sleepy).
I am fine if they want to put her in ICU, although I think she will be fine on the floor.
They wanted to hold off (for obvious reasons) and see if she gets better or worse. So I just kept giving eardrops...hoping that they might help, even though infectious disease did not seem to think it would help.
Yesterday (Sat) she had a long seizure. It was the same kind she had last week (just her eyeballs bouncing up and down (called vertical nystagmis). In the midst of it we called the on-call neurlologist and ended up giving two separate doses of ativan. The seizure stopped after about an hour and we were able to avoid a trip to the hospital.
I called and made an appointment with her pediatrician to look at her ears on Monday. On Monday I was going to call and wriggle my way in to ENT sometime this week. They had tossed around the idea (while she was inpatient last week) of removing the ear tubes. Bacteria likes to stick to any foreign body. So by removing the tubes they may be able to help get rid of the bacteria.
I figured the long seizure Sat morning must be caused by her ears still being bad.
During the night (at 3 AM) she had a seizure where she dropped her O2 to the low 60's for about 3 mintues. I went back to bed and then about 10 minutes later I heard her cry out. This is TOTALLY uncharacteristic of Ellie. #1) To cry...if she cries, you know it is really bad pain #2) for me to hear her cry from the other room...her cries are often silent.
I went in and she was having another eyeball bouncing seizure. When she was still seizing 10 minutes later, I gave her "rescue meds" (Ativan to stop the seizure). 10 minutes later the seizure had not stopped, so I gave her a second dose. The seizure stopped after about 30 minutes total (not include the oxygen desat).
I watched her for another 15 minutes to make sure it didn't start back up. And thought we were in the clear. That is when she started crying a lot more.
School said she cried twice on Fri and she cried once on Sat.
I gave her ibuprofen, but the crying continued. I climbed in bed with her to comfort her. The crying continued. It seemed that particularly when I would touch her face/ear area she would cry more. Finally I promised her I would take her to the hospital.
I debated calling the ambulance, or driving the 45 minutes myself since I was slightly concerned about her not breathing/having low oxygen since I gave her 2 doses of ativan. I decided we could make it, so I drove her. She did fine on the way down here (to Primary Children's ER). I did put oxygen and a pulse ox (oxygen monitor) on her to be safe.
When we got into the ER and they transferred her to the bed she had another desat (possible seizure??) where she dropped into the 30's. That got everyone hopping! It lasted about 2 minutes.
We had her only on 1 liter of oxygen for a few hours, then it seemed like she was a little more sleepy, so I asked to have her put on her bi-pap to give her a break.
Here are the results so far, from the tests they have run. The ER dr. said her ears actually look good. He is very surprised to hear that she had a resistant pseudemonas last week. Head CT and shunt series (x-rays) (both looking at shunt) both look good. CRP (level of inflammation) was great. Electrolytes looked good. Platelettes and white blood count were low...but not alarmingly terrifyingly low. They said it could be a bone marrow something or other. But they were not terribly concerned.
Here comes the funny part...so the ER Dr. says "Well, we'll leave it up to you if you want to go home or stay." I said "Stay because something is going on and if we go home, we will be back tomorrow."
So then the floor Dr.'s (the inpatient Dr.'s) come down and are worried about putting her on the floor (instead of ICU) because she is so sleepy and is on bi-pap. I tell them she was doing fine on oxygen I just wanted to give her a break, so I asked to put the bi-pap on. But they are still concerned that they cannot arouse her. I say, "Well, she had 2 doses of ativan, has been up since 3 and was cold when we got here (so we had to warm her up)".
I just think it is funny that they were willing to send us home, and then a few minutes later are debating putting her in ICU.
They are going to give her ritalin (that she takes every morning to wake her up) and see if they can at least arouse her. (She is SUPER sleepy).
I am fine if they want to put her in ICU, although I think she will be fine on the floor.
Sunday, December 8, 2013
Home
We are home...I knew this morning, but didn't want to jinx it by saying anything. Last time I announced we were coming home we ended up staying several more days.
She is doing good.
The second blood culture never grew anything, so they say that she did not have a staph infection in her blood...PHEW!!!!!!!!
We are going to raise her nightime dose of her seizure med to try and get rid of her night-time desats. It may be time to look seriously at the keto diet. It has shown great success in seizure control. I just don't don't know if I want to do one more big change right now. I am trying to not plan anything close to when the baby is coming (Feb 1) and then I will need a while after to recoop...so I don't foresee when we would be able to do it....maybe summer??? It requires a few nights stay in the hospital. I also don't want to be there during respiratory season either.
They also gave us ativan as an emergency med...but it didn't stop the seizures in the hospital, so it is unlikely to stop them here either. We'll see.
We can also use ativan to give to her for 5-7 days while she is acutely ill to try and prevent seizures, the problem is that it makes her sleepy. We'll see.
The ear culture had grown out rare pseudemonas and sensitivities had not been determined yet. But they figure cipordex ear drops should cover it.
Her puffy hand and foot...they said must be postitional. I highly doubt it. We kept her hand and foot elevated for 2 days straight and the swelling did not go down. But they were ready for us to go and we were more than ready, so we will keep an eye on it. If it gets worse we will have to take her back in.
She is doing good.
The second blood culture never grew anything, so they say that she did not have a staph infection in her blood...PHEW!!!!!!!!
We are going to raise her nightime dose of her seizure med to try and get rid of her night-time desats. It may be time to look seriously at the keto diet. It has shown great success in seizure control. I just don't don't know if I want to do one more big change right now. I am trying to not plan anything close to when the baby is coming (Feb 1) and then I will need a while after to recoop...so I don't foresee when we would be able to do it....maybe summer??? It requires a few nights stay in the hospital. I also don't want to be there during respiratory season either.
They also gave us ativan as an emergency med...but it didn't stop the seizures in the hospital, so it is unlikely to stop them here either. We'll see.
We can also use ativan to give to her for 5-7 days while she is acutely ill to try and prevent seizures, the problem is that it makes her sleepy. We'll see.
The ear culture had grown out rare pseudemonas and sensitivities had not been determined yet. But they figure cipordex ear drops should cover it.
Her puffy hand and foot...they said must be postitional. I highly doubt it. We kept her hand and foot elevated for 2 days straight and the swelling did not go down. But they were ready for us to go and we were more than ready, so we will keep an eye on it. If it gets worse we will have to take her back in.
1 more seizure
She had another desat (low oxygen) seizure at 1 AM last night. O2 down to the 60's. It lasted about 2 or 3 minutes. Sounds scary...is scary...is normal (for her).
Other than that it was an uneventful night.
Blood cultures to know if she actually does have staph are not back yet.
This whole hospitalization her right hand and her left foot have been swollen. We have been keeping them elevated. They look slightly better. If they don't get better, they will go looking for a blood clot with ultrasound.
Other than that it was an uneventful night.
Blood cultures to know if she actually does have staph are not back yet.
This whole hospitalization her right hand and her left foot have been swollen. We have been keeping them elevated. They look slightly better. If they don't get better, they will go looking for a blood clot with ultrasound.
Saturday, December 7, 2013
No results
I think I forgot to mention the pediatrician sent in a sample to culture from her right ear (the bleeding one). That would have been Tuesday.
They also sent another sample to culture when we were admitted on Thursday.
The first sample grew "rare pseudomonas". Which means just a few pseudemonas bugs. The new eardrops, ciprodex, should cover that. Cross fingers.
The blood sample that showed staph was supposed to show sensitivities today...it didn't...maybe in the morning.
The second blood culture to see if she really does have staph in her blood, or if it was a contaminated sample will hopefully be back tomorrow afternoon/evening.
She did not have any more seizures today, but she was crying this morning. I think maybe her ears hurt. We gave her ibuprofen or acetaminaphin (I'm not sure which) and the crying stopped.
She was awake, but sleepy all day. Her eyes were open a slit all day.
Fairly good day. But I don't think she is feeling very well.
Good night
Jason and I went out for our anniversary dinner last night (we were supposed to get away overnight, but plans had to change). While we were gone Ellie stopped breathing and dropped her oxygen into the 20's. the respiratory therapist happened to be in the room and he was sweating it. He was bagging her and watching her vitals and getting ready to push the code blue button, then her sats popped up into the 90's. I am sure it was a seizure. It lasted less than 2 minutes. I wish she wouldn't do these things while I was gone, it makes me nervous to ever leave.
After that she had a perfect night. Perfect vitals, no leaking mask, no drops in temperature, no suctioning, no waking up.
It is not ideal to run vanc (the new antibiotic) through a peripheral IV (a regular IV). It is better to run it through a central line. But she doesn't have a central line (unfortunately her PICC line was pulled on Tuesday). So this morning when they started her vanc she started crying. The nurse turned down the rate and she stopped crying, but the IV infiltrated. So she had to get a new IV.
Also, I cannot figure out what is the difference, but she always gets worse sores on the bridge of her nose from the bipap mask in the hospital. It happens at home, but not nearly as bad. It is her mask from home, I put it on the exact same, I tighten it the same, I don't let anyone touch it but me. I try and have her head the same and the elevation of the bed the same. The only difference is the bipap machine itself. I think it is more powerful than the home one, so I think I have to tighten the straps a little tighter than normal. I have asked if it would be the same pressure and they say yes. But I don't think that can be true. It feels more powerful and sounds more powerful. They will not let you use your home bipap machine unfortunately.
She is awake so far this morning. Her nose was congested. I sucked out a ton of really thick stuff, but it was all upper airway (nothing in her lungs).
Friday, December 6, 2013
Update from the last several weeks
Several weeks ago (while still on IV ertapenum) her left ear started draining green gunk. I took her to the Pediatrician and he said since she was on such a big antibiotic already he didn't want to add another antibiotic or eardrops. Infectious disease said the same thing.
I do not know if this fully cleared up or not, but after a day or two I didn't see any more green gunk coming out of her ear.
A week ago Tues made 6 weeks of IV antibioitcs, so they switched her from IV ertapenum to oral (gtube) ciprofloxacin.
Last week both ears started draining. The left ear was green gunk and the right ear was blood (not a lot, but definitely fresh blood).
I called the pediatrician and asked if he now wanted to do eardrops(since this was the second time in such a short period plus now it was both ears). He called in ofloxin eardrops for her. We were doing the eardrops twice a day for a over a week. The left ear had virtually stopped draining and the right ear was still having some blood out. The blood had lessened, but it was definitely still bleeding.
Monday they did blood work and it looked fantastic (they have been doing bloodwork once a week since the baclofen pump infection).
I took her to the Dr. on Tues because I thought that was a long time for the ear to be bleeding and be on the eardrops. He took one look in her right and and said it looked "terrible". I asked him to define terrible. He said it was so swollen he couldn't see the ear tube and there were spots he could see bleeding. The left ear looked infected also. He said to continue the eardrops for another week.
Since the bloodwork looked so great Monday, they pulled out her PICC line.
Yesterday (Thurs) morning she had a seizure starting at 8:08 AM. Her eyeballs were bouncing up and down (called vertical nystagmis). At 8:18 I gave her emergency seizure med (diastat), it did not stop the seizure, so I called 911.
Her breathing and vitals remained stable throughout.
The ambulance came and took her to the local ER. They gave her ativan. The seizure did not stop. Then they gave her Fosphenytoin. Finally the seizure stopped after 90 minutes.
The local ER called neurology at Primary Children's and they wanted her to come through the ER at PCH. So they transported her by ambulance to PCH.
She was pretty sleepy from all the seizure meds, so she needed oxygen, but did fine other than that.
They did blood, urine and snot samples. The snot came back positive for rhinovirus (which is the common cold). Plus we know that she had the double ear infection.
When you are sick with anything seizure activity can increase. Her blood and everything looked really good so they really just thought it was the ear infections and the cold.
They wanted to watch her overnight to make sure she didn't have more seizures and to see if they wanted to switch antibiotics.
They did a dose of keppra (seizure med) last night and again this morning to ward off potential seizures. She cried both times they gave it to her. It can make you agitated. I told them not to give that to her anymore. So they are switching to oral ativan for a few days as an additional seizure med while she is acutely ill.
It was really funny because every Dr. that looked in her ears said they looked really really bad. Then ENT came by and they said "Those don't look so bad". But they did want to switch from the ofloxin eardrops to ciprodex because ciprodex has a steroid in them. I need to remember this and tell her pediatrician next time he says they look swollen. They also wanted to switch because if the ofloxin was going to work, it would have done it within a week.
She really did fine overnight. No problems. This morning the plan was to go home this afternoon ( Fri).
At 10:48 this morning she had another seizure about an hour and a half long. They gave 2 doses of ativan. It made her tired the rest of the day and really didn't necessarily stop the seizure. The seizure did stop eventually, but not right away.
This meant she would need to stay at least another night.
Boo!
The Dr. came in this evening and said that her blood cultures from yesterday grew out staph. Staph is bad in any form, staph is bad. However...it did not grow out until 28 hours. They said they typically consider it a good sample if it grows within 20 hours. After 20 hours it could be a contaminated sample. Plus staph is usually sensitive to cipro, which she has been on for a week. We will not know the sensitivities (which antibiotic will kill it) until tomorrow. They did repeat blood cultures tonight.
They spoke with neurosurgery because it is possible that her shunt could be infected. They felt like we should add vancomycin in addition to the cipro.
Ahhhh...I am not prepared for a big complicated hospital stay right now. I still don't feel like I have recovered from her last one.
Overall she is doing well.
I do not know if this fully cleared up or not, but after a day or two I didn't see any more green gunk coming out of her ear.
A week ago Tues made 6 weeks of IV antibioitcs, so they switched her from IV ertapenum to oral (gtube) ciprofloxacin.
Last week both ears started draining. The left ear was green gunk and the right ear was blood (not a lot, but definitely fresh blood).
I called the pediatrician and asked if he now wanted to do eardrops(since this was the second time in such a short period plus now it was both ears). He called in ofloxin eardrops for her. We were doing the eardrops twice a day for a over a week. The left ear had virtually stopped draining and the right ear was still having some blood out. The blood had lessened, but it was definitely still bleeding.
Monday they did blood work and it looked fantastic (they have been doing bloodwork once a week since the baclofen pump infection).
I took her to the Dr. on Tues because I thought that was a long time for the ear to be bleeding and be on the eardrops. He took one look in her right and and said it looked "terrible". I asked him to define terrible. He said it was so swollen he couldn't see the ear tube and there were spots he could see bleeding. The left ear looked infected also. He said to continue the eardrops for another week.
Since the bloodwork looked so great Monday, they pulled out her PICC line.
Yesterday (Thurs) morning she had a seizure starting at 8:08 AM. Her eyeballs were bouncing up and down (called vertical nystagmis). At 8:18 I gave her emergency seizure med (diastat), it did not stop the seizure, so I called 911.
Her breathing and vitals remained stable throughout.
The ambulance came and took her to the local ER. They gave her ativan. The seizure did not stop. Then they gave her Fosphenytoin. Finally the seizure stopped after 90 minutes.
The local ER called neurology at Primary Children's and they wanted her to come through the ER at PCH. So they transported her by ambulance to PCH.
She was pretty sleepy from all the seizure meds, so she needed oxygen, but did fine other than that.
They did blood, urine and snot samples. The snot came back positive for rhinovirus (which is the common cold). Plus we know that she had the double ear infection.
When you are sick with anything seizure activity can increase. Her blood and everything looked really good so they really just thought it was the ear infections and the cold.
They wanted to watch her overnight to make sure she didn't have more seizures and to see if they wanted to switch antibiotics.
They did a dose of keppra (seizure med) last night and again this morning to ward off potential seizures. She cried both times they gave it to her. It can make you agitated. I told them not to give that to her anymore. So they are switching to oral ativan for a few days as an additional seizure med while she is acutely ill.
It was really funny because every Dr. that looked in her ears said they looked really really bad. Then ENT came by and they said "Those don't look so bad". But they did want to switch from the ofloxin eardrops to ciprodex because ciprodex has a steroid in them. I need to remember this and tell her pediatrician next time he says they look swollen. They also wanted to switch because if the ofloxin was going to work, it would have done it within a week.
She really did fine overnight. No problems. This morning the plan was to go home this afternoon ( Fri).
At 10:48 this morning she had another seizure about an hour and a half long. They gave 2 doses of ativan. It made her tired the rest of the day and really didn't necessarily stop the seizure. The seizure did stop eventually, but not right away.
This meant she would need to stay at least another night.
Boo!
The Dr. came in this evening and said that her blood cultures from yesterday grew out staph. Staph is bad in any form, staph is bad. However...it did not grow out until 28 hours. They said they typically consider it a good sample if it grows within 20 hours. After 20 hours it could be a contaminated sample. Plus staph is usually sensitive to cipro, which she has been on for a week. We will not know the sensitivities (which antibiotic will kill it) until tomorrow. They did repeat blood cultures tonight.
They spoke with neurosurgery because it is possible that her shunt could be infected. They felt like we should add vancomycin in addition to the cipro.
Ahhhh...I am not prepared for a big complicated hospital stay right now. I still don't feel like I have recovered from her last one.
Overall she is doing well.
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