No more please!

[Eri's mom]

Hi again...

Well, Eri was in the hospital again. We went in Tuesday morning and came home last night. She wasn't in DKA but was close.
Here's a bit of what happened:
Monday night she started complaining of bad back and chest pain. Her bgl's weren't really too out of whack and she had no ketones, just that racing heart and the panting for breath and dizziness. The thing that ticks me off is that I fell asleep around 1 something and she had to take 4 showers for her heart racing and never woke me up(her dad is still pretty sick w/ pneumonia)...and I have been taking care of him...the steroids that don't agree w/ him...ANYWAY, I get her up in the morning and her bg is 527...a very small trace of ketones, she drank water, bolused in her correction dosage and wouldn't eat. She went to school b/c she doesn't want to miss...
I rec'd a phone call around 9 am from her nurse...her bgl was "HI" and her ketones were large...UGH...pulse was 100bpm and bp was ok, but she was dizzy and nauseated. So, I told the nurse I was just getting ready to jump in the shower when she called, give me 30 minutes b/c I had to call endo and I'd get back to her. Well, I did all that, endo told me to call her pediatrician and have them see her...UGH! So, I called the nurse and said I'd be right there. I got there and Eri was pale and could barely move. So, we got home(I had thought ahead and made a pb sandwich on wheat, packed my veggie sticks and goldfish, portable dvd and movies and a bunch of waters)...while I was downstairs(the ped was going to see her at 11:30), I hear the power puking start. Eri saying "Mom, I'm saving it for you to see(she's so thoughtful!)...and I walk upstairs and she is STILL puking and says, just come on, look at it(I have NO clue as to why she finds that so important). For someone who hadn't eaten in over 12 hours, there were colors in there that she HADN'T eaten. Not good, considering red was one.
So, I called endo and said, listen, she's throwing up, I....and the one CDE who doesn't like us, said, "well, it's obvious you should bring her into the ER"...I said, Gee, ya think?(I was ticked at that)...So, Eri cleaned up and changed into comfy clothes and we left.
We got there and she had already had an extra 5 units of novolog...when we FINALLY had a nurse come into the room they put us in(after being in the room for almost 2 hours), she ran all the bloodwork and her bgl was ...weirdly...527. So, I had to wait for her to start the saline drip. She wasn't in DKA, thank God, but they admitted her anyway. They sent us up to the floor by around 5 pm(we had been there since 11)...and went through the whole Q&A again and the "weren't you here last week?" speel.
Then they switched her drip to the potassium chloride. It took forever for her bg to fall and for her to get clear ketones. They did feed her(go figure, her favourite meal there...Hungarian goulash ...ewww...but it was going in HER tummy, I ate my half of my pb sandwich). Then we watched some movies and she asked me to lie in her bed w/ her(that chair was SO uncomfortable)...but she kept hitting me w/ her IV arm and I couldn't sleep anyway, so I just sat and watched the sun come up. Her vitals were low, of course, then they were going all over, then low again. No temp(the kid does not get temps)...and then the waiting game for docs. The nurses were there every 2 hours...the nurse from the night b/f asked what Eri wanted for b-fast and we told her the eggs and sausage and toast, Eri HATES waffles and pancakes there...what did they serve her...the waffles. They brought in a new tray, thank God. Then the morning nurse said the night nurse said we couldn't carb count. Yeah, k, right. They watched us count and they were like, "wrong"...both Eri and I were like, no, it's not...they questioned us forever...and we kept saying HELLO...the am snack...they were like, OOOHHHH. Geesh.
At one point, the CDE who doesn't like us was partially in our room talking to Eri's nurse and wouldn't even say hello...makes one feel loved:smartass:
So, still waiting for docs to come in...FINALLY, they do, sometime after 1 or 2...then they say that I can't control Eri's diabetes, but what would I do different? I said, well, start w/ her lantus dose...and they asked...to what...I said, 25units at dinner?...she said, I'll go to 24...fine. (there were 3)...then she asked what else...I said, maybe just for now, drop to a 1:10 ratio..she said no, Eri is too skinny for a diabetic, we'll stick w/ the 1:15 for meals, BUT, she readjusted her corrections(example, used to be...200-250, 1unit novolog, 251-300, 2units, 301-350, 4units and so on, now, it is 120-160, 1unit, 161-200, 2units and so on...quite a drastic change, eh?)
So, they said after dinner, she could go home.
Well, dinner came and went, and Eri cleaned the room(she's compulsive about that...)...and then she noticed her IV was sliding out(by the crook of her elbow, bendy part)...so we went to the nurses desk and she (nurse) took it out and it shot blood like it was in an artery. She was like Wow that went far! I said, yeah, that lovely Von Willebrand factor 8,..she was like, yeah, forgot about that...took a bit to stop the bleeding , but they cleaned her up and we were then discharged(yea!)...
They (endos) told me I would have a visiting nurse come out to keep an eye on Eri(ok, like I don't take care of her...like all these other issues AND puberty don't play a part in this...we bolus, carb count, go w/ the regimine THEY give us and it's MY fault)...so, the nurse came today and was like, this is ridiculous. Your daughter is 13, in puberty and has other health issues. Her bg's are in better control so far(w/ this new regimine, thank GOD they changed that!)...and she said she was letting them know she does NOT need to come back out b/c we know what we are doing, etc...

That's the LONG of it.

I'm a bit exhausted since I checked her every 2 hours last night...she woke up w/ a bg of 79 this morning :)...b/f dinner was 120, was higher at school(220), but we corrected that and after school she had her snack and she bolused in and when I saw the 120 I was pleased...so was she :)

Yep, it's been quite tiring. Especially w/ taking care of a sick husband as well, but, that's life.

I just want Eri well, and I believe she IS and will only get better. That A1c WILL drop(in Jesus Name) and hopefully we will get it to at least between 7-8%. (her lowest ever was 6.2%...just refound that paperwork)...so I know it can be done.

They called today(ENT) to find out about her heart murmur and about antibiotics for her surgery on Tuesday(Ewww, I have to go back!)...and the awesome guy said he would call the cardiologist for me :) Happiness is a nice PA :)

We can't do the tilt test and EKG on Monday b/c she missed her ECHO on halloween...so that has to be rescheduled.

I'll shut up.
Sorry this was so long...I'm beyond tired and seem to babble when tired:nerd:

[Penny]

I feel for you even more now that I am spending so much time at the hospital. It's bad enough that Eri has to endure so much, but you have to suffer, too. If computer hugs help, here's one from me.

[barbarac]

I cannot imagine how you must feel. I know it hurts probably twice as much watching your child suffer. Take care and good luck to you.

[Cyborg]

Glad to hear everything is ok... Sounds like the adjusted scale for correction boluses may be working. There are actual tests (http://www.insulin-pumpers.org/howto/bgi.html) you can do also to help determine one's insulin sensitivity factor or insulin to blood glucose ratio.

[ladytaz]

well sheeeeesh! just love it when docs and nurses don't listen!! Keeping y'all in my thoughts and prayers!! *hugz*

[Keezheekoni]

Hugs to you and your family! Your story really had me going for a minute, I thought you were going to say something about the docs calling CPS and turning you in for not caring for Eri well enough. That fear is with me all the time when docs don't understand my 3 year old's disease (it's an orphan disease, so not many know about it...). She stays really tiny and was classified as failure to thrive for months.

Anyhow, I hope that you all are feeling better soon...I'll pray that there are no more ER trips for anyone!

[Diana]

Don't you think it might be a good idea to keep having the nurse out for a while though? Obviously the hospital is concerned about what it happening with Eri, and at least if you have the nurse come out regularly you will have some kind of back up if they do call CPS.

I mentioned this before on a previous thread, but not sure if you saw it. Have any of the doctors ever reccomended keeping Eri in the hospital for a while just to monitor her? That way they may be able to get a better idea of what is going on with her, and they may also get off your back about her control if it proves that her levels are simply wacky. You both spend so much time in hospital anyway, surely a week or so of her just being monitored couldnt hurt? If you organised it you could probably get her school work so she could take it in, so she wouldnt get too behind on that. They could do some of that insulin sensitivity factor testing that cyborg mentioned done while she is in there, knowing that nothing should be skewing the results.

[kgm0612]

(((HUGS))) Hope Eri is feeling much better today.

Karen

[Eri's mom]

Thanks... :)

Yes, this whole thing ...even b/f this last time in the hospital, I was hoping they'd keep her just to see WHAT is causing this...answer the why's, know what I mean?

I did ask why the nurse didn't need to come back...she asked a lot of questions, I answered, (she came 15 minutes b/f Eri came home from school) then asked Eri a lot of questions and came to her conclusion. She said she's seen this a lot when docs don't pay enough attention(notice how her regimine has changed so much?)...and the parents ...and child...are doing everything they are being told.

Eri's bgl this morning(at 7) was 260...we did the correction bolus, and she is now 121. Amazing how this new regimine is working so much better. It's obvious she wasn't getting the right dosages, but, hey, I'm not a doctor, what do I know?(I don't mean to be sarcastic, it's just they hate it when suggestions are made).

We will be back in the hospital on Tuesday morning for her surgery...have to be there at 6am. At least she is this doc's first surgery of the day. (I think I mentioned that). We'll see what endo has to say that day. They are also supposed to call the day b/f so I can give her the right lantus dose the night b/f since she won't be eating much b/f and after this procedure. I asked if they'd keep her overnight, but it's such a common thing, they said no.

I hate that I'll be working from 12-11:30 today/night. Her dad will have to take care of her and watch her. I haven't worked since last Saturday.(he hasn't in 3 weeks now I think...I have seem to lost track of his time)...I may be able to get out a lot earlier...around 9 or 10, and I'll have my dad stop by and check on everyone. Maybe he can even bring her up to the pizzeria, but since the robbery across the street last week, I really don't want her there.

OK, shutting up!

[slipperyelm]

Eri's mom, I wish I lived near you so that I could offer my help. Eri's problems have been scary and ,it seems. Plus her Dad being sick. And you have been taking care of all this while you have a job to hold down. I wish I could take some of the weight off your shoulders. I also wish I had a magic wand to make it all better.

[Phranky]

You're obviously an incredibly strong, smart and devoted Mother! Eri is very lucky to have someone like you to look after her.

My thoughts are with you and I hope she get's to a stable place to enjoy life for awhile without hypo's and hospitals.

[Cinnabon]

Robin,
I send my strength and heart to all of U. My prayers are with You. Thank you very much for posting your troubles. If possible , please keep it up.

Im W/ you!!