Christmas

The Saturday night before Christmas Ellie had a fever during the night.  We kept her home from church Sunday.  I was worried that we might end up in the hopsital for Christmas for the first time.  She has been inpatient for 2 Halloweens, but never for Christmas.  

But she never had a fever Sunday day, Sunday night, Monday day or Monday night.  So it was jsut some weird fluke 6-8 hour fever or something.

Her present from Santa was bongo drums, but they ended up being hard to play and she made a grumpy face at them when we tried having her play them...Christmas FAIL!  Oh well, you can't win them all.

The last blood work I heard about looked better.  Not completely better, but better than what it had been.

She has been doing well with her congestion the last few days, but has been more sleepy than usual.

Crazy morning

The other day we got her wheelchair adjusted and they added pads to on the outseide of her knees to hold them in so they weren't frogging out so much...Today we noticed she had a bedsore on the the outside of her left knee.

Then I found a sore on the inside of her cheek (left side).

And her right ear had been draing during the night.

Crazy.  We found all of those things this morning.

I called to get her in with her ped for the ear and the only time they had today was at the same time she was supposed to have an eye Dr. appt.  So I took the appt with the ped and had to change the eye Dr. appt to Thur.  (thankfully it wasn't a primary childrens Dr. or I would have had to wait 3 months for a new appt.).

The sore inside her mouth...those just happen I think usually from a seizure that she bit her cheek or her lip.  They just get better after a week or so.

The sore on her knee (pressure sore) I will have to call the wheelchair shop and probably go back to SLC.  They do have someone who will come out to your house...but I do not care for her.  Maybe for something minor like this she would suffice, it would save me a trip to SLC.

They did blood work yesterday (remember it has been bad for a few weeks), I'm assuming it's still bad...especially now if she has an ear infection.  I will have to call and check.  They have more blood work scheduled for Thur also.  Thankfully they have been able to get the bloodwork done through homecare...so a nurse comes to our home or to the school and draws the blood up, rather than me having to check her out of school and take her to the lab, or wait until after school and load up all of the kids and go to the lab.  That had been a HUGE blessing for me.

I think since switching to the new antibiotic she seems much more congested, mabe it's not doing it's trick.  I will have to talk to Roz about it.  But they have said multiple times that they are running out of options of antibiotics to switch to.

I feel like we are not out of the woods yet with the whole surgery infection thing.  Every turn we take there is some new creature waiting to jump out and scare us.  Not like a bear waiting to attack, but more like a skunk...harmless, but makes you jump and makes you cautious.

Well there goes my day...it will be spent making phone calls and chasing down Dr.'s.  Yippee Skippee!

switching antibiotics again

Her blood work has not looked good for several weeks now.  They (Roz) and we kept hoping that it would pick back up...but it's not, it's actually worse.

Her total white count is 2.2 and should be 4.5-13
Her platelettes are 84 and should be 150-400
Her neutrafils are 800 and should be 1200-8000
Her eos are 7% (but have been 11% so not the worst that they have seen them)

Basically they are suspecting a drug interraction, meaning that her antibiotic (Cipro) is not allowing her bone marrow to produce white blood cells.

 So we are stopping Cipro and starting Levofloxacin.  There is a 30-40% chance that the new drug will have the same effect.

If it does not help, they may send us to hematology (blood Dr.'s).

They are going to check labs next Mon and Thur.

We have to get in 6 months of antibiotics and they are running out of options.  At six months if the infection seems to still be a problem I am pretty sure they will remove the rods and the baclofen pump and tubing.  I could be wrong, but what I think they told me is that by 6 months teh spine will have fully fused so she wouldn't actually need the rods anymore, but her back would stll be straight.  I don't know if I buy it because her bones are so soft.

Not the news we were hoping for.  Although it may explain why she has had a stuffy nose for soooooo long (if her white blood cells are down it can't fight infection as well.

I have also been thinking about the seizures...if she is not feeling good (white blood count is down) it could cause her to have increased seizures.  And I am also wondering if the onfi (seizure med) is interfering with her proglycem.  We never had problems with blood sugar until we started the onfi and when we increased the onfi her blood sugar seems to be lower and has never really gotten back to normal.

In good news...She has stopped having the night-time desaturations (dips in oxygen) and she seems to be staying more alert during the days (now that she is used to the higher dose of seizure med...but it took about 2 weeks).

Raise seizure meds

We ended up having to raise the morning seizure med because she was still having night-time desaturations (drops in her oxygen) probably due to seizures.  So now we have a sleepy girl for a week or two until she gets used to the higher dose.

But in good news...we haven't had a desaturation for a few nights.

Endocrine

This will be a pretty boring post...it is just a summary of the last few Dr. appts...mainly for my own memory.

Neurology
Keep on keepin' on

Don't raise morning seizure med dose if doing OK with just an increase at night.

Can just do seizure med every 3 months during menstrual cycle if desired, if that is truly what is causing seizures.  It is definitely possible.

Endocrinology
Saw a new Dr.  Because her old Dr. has been having health problems and is now part-time.  New Dr. was OK, not terrible, not fantastic.  I'm not sure if we'll keep the old one or the new one.

Blood tests (Free T4 and TSH looked good)

She had no ideas on Ellie holding her urine.

Her bone scan (to see if her bones have fused---meaning she is done growing) is difficult to interpret because  it is hard to get a good x-ray of her hand (her hand is supposed to lay flat for the x-ray---but that is impossible for her).  The new Dr. thought her fingers looked like a 14 year old (which would mean she has less than 3% growth left---for a girl) but her wrists were not that mature.  So she wants to do 6 more months of the estrogen and then do another bone scan (hand/wrist x-ray).

I asked if there were any other medications other than provera to slough the lining of her uterus every three months, since she had big seizures and seemed really uncomfortable while taking that medicine (it was probably upsetting her stomach).  She said, not really.  So I asked if we could go longer than 3 months like 5 or 6 months.  She said yes, but if the lining got too thick it could make her bleed so much she would need a transfusion.  I suggested we try 4 months and see how it goes.  Then try 5 months and see how it goes. Then try 6 months and see how it goes.  She agreed that it sounded like a reasonable plan.  She also said if she has any spotting, then we would need to do the provera then.

I asked when we get done with the growth, then what do we do about the estrogen she is getting now.  She said we can switch to a low dose estrogen, like a low dose birth control pill or a patch or shot or something. She would need the continued estrogen for bone strength/density.

Her blood sugar...She was diagnosed with hypoglycemia 3 years ago.  She was started on the proglycem (med to block her insulin...which therefore allows her blood sugar to be higher...because insulin brings your blood sugar down).  3 years ago she was started on a dose of 0.7 mL of the proglycem.    Over the 3 years we lowered it to 0.5 mL at some point and she still did fine.  As long as she gets her proglycem and her continuous feeds (formula through a feeding pump directly into her stomach through a g-tube) her blood sugars have been EXTREMELY stable for the last 3 years.  98% of reading have been 90-110 which is perfect.  When she had the low blood sugar episode a while ago of 24 (which they attributed to lowering the rocephin) they raised her proglycem to 0.6 mL.  Her blood sugars recently (since the low of 24) have been in the high 70's to mid 80's.  These are still OK numbers...but they are a little low...and why so much lower than they have been for 3 years.  So I asked the new endocrinologist if we could go back up to the 0.7 mL and see if it helps.  She said that would be fine.  She also wanted to do an A1C fingerpoke blood test to look at something or other.  I have not heard the results of the A1C...I was anxious to leave because we had waited hours to see her and really just didn't want to wait any longer.  I will have to call today to check up on that.  I know they say they'll call if there's a problem with the results...but that is not sufficient for me...I want to know either way...to make sure something isn't getting overlooked.

We also went over the glucagon (super low blood sugar med) emergency plan just to clarify a few grey areas.

I waited an hour to see her and then it was probably an hour appointment.  So...sorry everyone after us (that we made you late), but we had a lot of things to go over.

Special Needs Airline seatbelt

I came across some scribbled notes I had taken at a special need conference from a few years ago...this is the name of the airline carseat/seatbelt straps I had been searching for and never found.

http://www.crelling.com/PRODUCTS.htm

At the time when I was researching I only found the CARES device.

Anyway, I thought I'd post it here for others and for my own memory.

Mikael

Another seizure

It was a rough morning for Ellie and a rough day for Mom (me).

Ellie had another long seizure this morning.  At 5 minutes I gave her emergency seizure med.  The seizure stopped within 5 more minutes as expected.  But then she slept for about an hour.

Seizures can make people sleepy, but they normally don't affect Ellie in that way.

Even yesterday when I gave her the emergency med she didn't get sleepy.

So then when she was sleepy I wasn't 100% convinced that the seizure had stopped.  So I called the neurologist on-call.  She said if I could "mess" with her and she would open her eyes or pull away from me or do something intentional then she the seizure was done.  She said to check her every 30 minutes.  She also said that she could sleep upwards of 6 hours.  Just to keep checking on her.

Well, an hour after the seizure stopped she woke up, then went back into another long seizure.

I called the on-call Dr. again because I didn't know if I could give another dose of the emergency med...plus I didn't have any more of the diastat (rectal valium) since I had used 1 yesterday and 1 today.  (I ordered more yesterday, but the pharmacy had to special order it in and it wouldn't be here until today).  But I did have some Lorezepam pills to use.  But once again I didn't know how much I could use, or if I could.

The on-call Dr. said I could give 1 pill (her normal dose is 1.5 pills).

She went past the 5 minutes but I held off giving the med because she kept popping in and out of the seizure and it just seemed like it was going to be done any second.    It lasted about 17 minutes.  (I should have given the med).  Why do I hesitate?

Her regular neulorogist didn't call me back yesterday, so I was glad he did call back today.

We are upping her daily seizure meds, again.  He also gave me this plan...

If she had a seizure lasting more than 5 minutes...give the diastat.  It should stop by 10 minutes.  If it stops and then starts, I can give another dose of diastat 15 minutes later.  If hat still doesn't do the trick...then ED (Emergency Department) here we come.

At the tail end of the second seizure I decided to try something...it seemed like it worked, but I can't be certain.  I got 2 of the strongest smelling things I could find (liquid smoke and vanilla extract).  It is like she tries to be present and pull out of the seizure, but she keeps getting sucked away from reality.  I thought maybe if I could get her to focus on reality then she might pop out of it.  So I held one of the flavors under her nose to catch her attention.  Then every minute or so I would switch flavors.  Then when I thought she was out of the seizure completely I played the piano and sang to her (albeit broken and rough) she loved it and it kept her in the here and now.  It kept her from popping back into the seizure.

Here is my theory as to the recent morning seizures and night-time desaturations.  #1) she has a slight head cold #2) we are giving her provera right now (the med we give her every 3 months for 10 days to slough off the lining of her uterus.  The Provera can be very irritating on your stomach plus the crampiness that comes with being a girl anyway. #3) The weather has changed-gotten colder

You can have more seizures when the weather changes, when you are not feeling good, etc...

So that was Ellie's rough morning...which caused me to have a rough day.  Ellie was fine and all immediate problems were resolved.  But I was just stressed and worried all day (about Ellie)...which led me to eat poorly, which led me to feel poorly, which led me to be stressed...which led me to eat poorly, which led me to feel poorly...you see how it goes.

For my own sanity

So when she was seizing I called neurology on call for some questions I had about the Diastat (emergency seizure med)...they just called me back...2 hours and 45 minutes later.  Wow  That is all...Wow.

So for my own sanity I need to post the response to some of the questions...
diastat dose should be 7.5 (up from 5)
Give emergency seizure med at 5 minutes.  Seizure should stop by 10 minutes.  If it doesn't,c all 911 and go to ER.  Or if worried before that call 911.
Breathing only needs to monitored until seizure stops.

Blood, snot and seizures

Her bloodwork is still off.  On the last post I said it was 500 (instead of 2000), then it went up to 1100 (I think), then down to 900 (I think).  I'm not sure...I should really write these things down.  Then on Wed (yesterday) it was down again.  I didn't ask the number.

Roz's nurse (Infectious Diseases) was concerned that it wasn't perking back up like it should.  But she still has a slightly congested nose and the rest of the family (except her) have all had the stomach flu in the last week.  So they were hoping that it was just a viral infection still.

This morning she had a big seizure.  I gave her diastat (rectal valium) which is her emergency seizure med.  And the seizure stopped about 15-25 minutes later.  The seizure lasted about 40-50 minutes.  It stopped in the ambulance on the way to the ER (again---that is what it did last time too).

Since being here in the ER she has been smiley, smiley, smiley.  I think she knows they are going to get her all fixed up.  All vital signs look good.

She has been having more night-time oxygen desaturations again.  This is with bi-pap and oxygen already on.  She will drop her oxygen.  Usually only to the  60's or 70's...but the other day it was 24.  24 is bad...it should be above 90.  Although her pediatrician tried to tell me something about how below 80 it is not very accurate.  All I know is that when it was 24 her lips were blue and I was scared.

Since she was having the desaturations I called neurology and they raised her seizure dose.  It might have helped slightly, but she has still been having them.

She has still been holding her urine for prolonged periods of time during waking hours.  Yesterday was at least 8 hours, then I lost track.  It is hard to keep track when there is me, Jason , a respite worker and school.  I think we need a tracking system (doesn't that sound fun?).

So they are running blood and urine here at the local hospital and calling primary childrens Neurology and Infectious Disease to see what they want us to do.

I am undecided if they will say go home or go to Primary's.

Right now she is doing fine.  She came out of the seizure and has been alert and smiley.  All of her vitals look great.  She didn't even need oxygen during the seizure.  They did blood and urine work.  I have not heard any results...they said it takes about an hour so that would put us at 11 AM.

I did check her blood sugar when she was seizing and it was normal, 85.  But it could have been low and then shot up during the seizure.

Her blood sugar has been slightly lower than she has typically been the last 3 years.  It has been running in the high 70's to mid 90's.

Her temp has been a little cold...but it has been cold outside too.  Yesterday it was down to 92-93F instead of her normal 93-95.

I really can't explain the long seizure this morning except that she has a cold/viral infection.

Maybe she needs to go up on her proglycem (med to block insulin) so that her blood sugar is running slightly higher all of the time?

I don't know.

If they don't admit us to Primary's, I need to follow up with...neurology, (seizures and/or desaturations), Roz (bloodwork), pulmonology (desaturations), special care (they have been trying to help me with the urine issue.), endocrine (slightly lower blood sugar).

I am going to post it here just so I can get it out of my brain...
questions for neurology
correct dose for diastat?
How long take diastat to kick in?
How long watch breathing/oxygen after giving diastat?
Desaturations...change onfi dose?  New seizure med?  Ketogenic diet?  3 day EEG?

Bloodwork is off

We met with Roz on Thur and had blood drawn that day.  Her white blood count was down.  It is normally in the 2000 range and hers was 500.  They thought it was probably just a virus, but said that it could be something more (like the infection returning or the antibiotics weren't working or something.)  So they wanted us to keep her home from school and church Fri, Sat, Sun, Mon and they would draw more labs today (Monday) and labs again on next Fri.

They said they would feel better if someone else in the family came down with something (like a cold) then they would really think it was a virus.

Well guess what, over the weekend, Jason had a head cold and I had 3 other pueking kids (not Ellie---just everyone else).  And then Jason came home from work with a tummy ache today.

I have managed to stay healthy, knock on wood.  Mom's aren't allowed to get sick you know!

And I dare say they shouldn't be worried about her blood anymore.

I have not heard the results yet from the blood drawn today, but I am no longer worried.

Now back to washing every towel and every sheet and blanket in the entire house due to you know what-yuck!

Blogger is working again

I apologize for the lack of updates...blogger was having issues last weekend and not letting me post updates. It seems to be fixed now.

We are home.  You probably guessed that.

We came home Mon or Tues...the day after she spiked the fever...whichever day that was.

The good news is her heart-rate has been below 100.  This means she is not in as much pain any longer.  I attribute it to time (since surgery) and increasing her baclofen pump settings.

The bad news is it has been way below 100.  This means that she is has been getting cold this week.  Which means that her heart-rate drops.  It has still been OK.  Nothing too scary.

Her temps have hit in the 91 F range several times this week and 92 F range several times.  These both require warming up with either an electric blanket or a warm bath.

A few nights this week she has been dropping her Oxygen sats into the 70's (it should be above 90).  SHe has a slight stuffy nose.  We have increased the time on her wiggly-jiggly from 20 minutes twice a day to 30 minutes twice a day.  And we are now suctioning her morning and night whether we think she needs it or not...this is in an effort to #1 clear the gunk and #2 get her to cough...that keeps her lungs clear.

Last night she dropped her sats to 24.  Her lips were blue...this was with bi-pap on breathing for her.  I don't know if it was a seizure or what.  We cranked up the O2, yelled at her, shook her, propped open her shoulder blades, put mentholatum under her nose, changed head position, etc...it finally came back up after what seemed like forever.

Jason and I are supposed to go out of town this weekend...why does this always happen?

I guess I better call  the sleep Dr. and neurology.

She does fine with her O2 while awake.

Picture

Here is a picture I took of Ellie tonight.

Spike

She spiked a fever this morning...100 F.  Her heartrate has also been up into the 140's instead of 120 that it has been running and her blood pressure is also up.

I am a little frustrated because they were going to do a cortisol (blood test) this morning and a bone age scan of her hand (I will explain below).  They were going to poke her instead of drawing it off her PICC line because the draws from the PICC line have been contaminated from the previous IV sugars.

I noticed the heartrate and temp right before they came to do the cortisol blood draw.  So I asked them to wait so that we could ask the Dr.'s if they wanted to do more blood work at the same time so they wouldn't have to poke her again.  Logical, right?

They waited and the Dr.'s said no, they didn't want to do any more labs...OK.

Then 2 hours later they decided that yes, in fact they did want to do more blood.  They said they are going to do it from the PICC line...but wasn't the problem that the samples were contaminated before?  Maybe they figure that since she hasn't had any meds going through the PICC line since Friday night it will be good now? But then why didn't they draw the cortisol from the PICC line?  Just frustrating...that's all...but it's OK.

The bottom line is they are doing more blood work, a snot culture and another urine culture and we will be here at least another night.

As far as the endocrine workup they did...they are redoing the cortisol because they did it at night instead of morning like they were supposed to.  Her thyroid was borderline low, so they are upping her thyroid meds.  They have upped her proglycem (the one that blocks insulin) and it seems to be working so far---her blood sugars have been stable.  They gave me the new plan for the glucagon (emergency low blood sugar med).  And gave me a new prescription for glucagon which will allow me to get 3 kits at a time...which is a much better plan.

Now to explain the bone age scan.  I have explained this before, but I think a lot of this blog goes in one ear and out the other, so I will repeat myself.  It is an x-ray of her hand.  Last January we started her on estrogen in order to send her into puberty.  When you go through puberty your growth plates fuse and you won't grow any bigger.  We did this for this very purpose, we didn't want her to grow any bigger.  In January they did a bone-age scan (an x-ray of her hand) to look at the growth plates.  She was at a 10 year old growth plate (She was 9 and a half at the time).  The last bone age scan we did a few months ago she was at a 13 and a half year old.  She only needs to get to a 14 year old (for girls).  So they wanted us to do another one in November when they thought that her growth plates would have made it to the 14 year mark.  The endocrinologist said we could just do it now in mid-october while we were here.