Monthly Archives: November 2012

Pretty Good

…that’s how I’d describe the past couple of weeks.  But then, if I think about it more I realize there have been a few rotten days in the last two weeks.  Try not to dwell on the crummy days, though.

Today Grace woke with a headache.  After OTC pain meds and two hours more sleep, she made it to school.  It’s 2:30 and she’s still there, so that’s good.  Then she goes to physical therapy.  She probably won’t be able to do a lot, but that’s ok.  I like that sometimes her health care team sees her on ordinary bad days.  That way I don’t look so crazy when I try to describe one of these “pretty good” days later.  She’s not strong or perky today, but I don’t have to walk her to the bathroom and her dad didn’t have to carry her out of school.  All in all, that’s not a real bad day.

And as I’m typing, I get an email from Grace.  Can I cancel PT?  She’s just too tired.  I messaged back that maybe she should just try it… we’ll see.

 

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As It Should Be

The nurse asks if she’s had an IV before…. yes, many.

Look at this!  Two days in a row!

Grace made it home and didn’t really come around at all until after 5:00.  She spoke to me long enough to tell me she wanted potato chips and Thousand Island dressing, that her head hurt BAD.  And then she took some pain meds and went to sleep until 6:00 when I got back with chips (and other groceries). She watched TV and zoned out until 8:30 when I put her to bed.

Since then I spent half the night in her bed, rubbing her back or cuddling with her, giving her meds when needed and making necessary calls to the school and clinic.  And I worked.  My hubby came home and watched the daycare kids while I took Grace to the clinic to see her doctor.

We really like Dr. J.  He’s younger and new to our small clinic.  He’s a pediatrician and also specializes in internal medicine.  I like that he’s open to working with Mayo on all aspects of her healthcare.  Unfortunately we hit some large bumps in her healthcare road during the summer.  Because her condition is not well known at all, we get a lot of medical staff that know NOTHING of how to care for Grace.  Over a year ago we quit trying to get any care at the local ER  unless time was very short… the nurses were rude and the doctors treated us like idiots.  There was no empathy.  Still really isn’t, but it has improved slightly after my many complaints.  Also, our small ER didn’t carry some of the medications we like to have available should Grace need them.  Instead when she’d need an IV cocktail to break a migraine, we’d drive to Fargo.  It is over an hour drive but well worth it.  In Fargo she is treated with respect and never made to feel like her pain is insignificant.  We also don’t have to explain her other symptoms; they just “get” it.  And there is something to be said for that!

Soooo, back to the troubles.  With hard to treat chronic illness, there are times when a physician’s hands are tied.  Not much can be done.  My daughter will have pain.  In her head.  In her abdomen.  She will be lightheaded and have trouble concentrating.  She will be easily exhausted.  She may faint or be too lightheaded to stand unassisted.  And all this can change on an hourly basis.  This summer we felt there was a communication breakdown with Dr. J.  We could no longer leave a message for him at the clinic with questions or concerns.  Even just to see if he wanted to see her with whatever it was going on… I was feeling like he’d kind of written us off as having done what he could.  When we’d feel like we needed to be seen and had to see someone other than Dr. J it was like starting over.  Explaining her condition and reassuring them that we didn’t expect them to fix the whole thing, just address this one particular concern.  And on it would go.

The last time we attempted to go to the clinic for IV meds, we got the urgent care doctor for the day.  She was quite vocal that she didn’t understand Grace’s condition and was uncomfortable giving certain meds that Grace has had success with in the past.  Even after reading the letter from Grace’s neurologist at Mayo, spelling out treatment options for emergency care doctors, this doctor was reluctant to do anything to help.  She ordered only what was kept on the clinic side of the building.  She said she didn’t “want to bother the pharmacy for any of this stuff” on the list from Mayo.  Nice, right?  I was livid.  Within two hours I was driving Grace to Fargo.

That prompted a sit down with Dr. J.  He spent an hour talking with us about an ongoing treatment plan for Grace.  He expressed his difficulty treating her when he didn’t see her regularly enough to stay caught up on her status.  I can respect that.  He agreed to educate the nurses’ in the phone nurse office to Grace’s situation and arrange to see her same day or right away next day anytime we felt the need.  He said he trusted my gut to know when she needed to be seen and he’d make sure staff knew to fit us in when I called.  He also said he would speak with the pharmacy and make sure all the suggested medications were kept on hand should she need them. In turn, I agreed to bring her in every other month regardless of her condition so he could stay up to date on her status and anything new with Mayo or other treatment plans.  We left that day feeling like maybe we’d cleared the air.  Honestly, I was hopeful but a little skeptical too.

Today worked like we had laid it out to work.  I am a happy mama.

After yesterday’s episode and the headache that came from it, I called right away this morning.  I explained who I was and what the last day had been like and that I wanted Grace seen by Dr J today.  I left this in a message for the phone nurse.  Within 30 minutes I had a call back.  They agreed and set up an afternoon appointment.  We waited until afternoon because with her medication she can’t have the usual IV drugs until 6 hours after her oral meds.  I had given her a round of oral meds at 7:30 this morning so we’d have to wait until 1:30 to give anything else.  When we got there, Dr J met with us for almost 30 minutes and then ordered the IV.  When we left 2 hours later she was wiped out, but pain free.  Nurses were nice and didn’t ask her stupid questions.

She got the care she deserved.

For that, I am thankful.

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Here we go again…

I have thought about just starting this blog thing over again… then I think that doing this at all is crazy… then I think it’d be a good outlet.  I truly don’t know.  So, lets give it another start.

 
Hi!  I am a mom.  I have two kids, one husband and a couple pets.  One kid is a pretty normal boy, or so I’m told by my husband.  I didn’t have much experience living around boys when I was growing up so a lot of this is foreign to me.  He’s a great kid though and he can always make me laugh, so how can I complain?  The other kid is a fantastic kid, too.  But she struggles with health conditions.  And that sucks.

Right now I’m waiting for the school to call.  Grace has been unconscious/unresponsive for over 45 minutes.  She’s been moved to the sick room and they are monitoring her pulse and pupils.  Sounds like something that should alarm us, right?  I would think so too, except that when this happened last month and we took her to the local ER we were treated like we shouldn’t have gone in.  We’ve since met with her primary care physician and her neurologist and they assure us that a syncope of this duration is nothing to worry about as long as her vitals are good.

They are, so I wait.

Bring her home! That’s what my mommy’s gut cries.  It’s hard to move an unresponsive child.  Over a hundred pounds of dead weight is not easy to maneuver into a vehicle.  I would hate for anyone to get hurt in the process.  So she was moved by wheelchair out of the classroom and to the office.

It’s been 2.5 weeks since she had a syncope at school.  Or at all.  The last one was more typical, lasting only a few minutes.  It did however stray from the norm in that she woke up vomiting.  She stayed at school that day and just called for some clean pants because she’d thrown up on hers.

I can’t imagine what its like to be her.  To never know when she’ll pass out or who will see or what will happen.  She’s a trooper… she just keeps going.

It’s been an hour now.  And I hate every minute.  There are a lot of things that stink about all this.  But, there are blessings too.  I think it’s time to talk a little more about both.

Another call from school… she’s starting to open her eyes but won’t respond when they talk to her.  I just called my hubby to go bring her home.

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