10.04.2012

Headaches and Lessons

The phone rang.

I ran across the house like the Flash in order to catch it before it woke my children.  (Notice that superhero reference?  I am so the mother of a little boy!)

I answered and perhaps was somewhat groggy.  I had just laid down for a quick power nap.  Ellie was up several times last night and my friend, C, decided to kick my booty this morning on our walk by suggesting we run up the steep hills.

It was a nurse returning my call for one of our specialists.

Will has been having headaches recently.  He has them several times a week and generally I've just blown it off.  (Note to self - don't blow off a child having headaches.)

But this morning, his head was hurting so bad he couldn't get out of the car at the drop off for school.  We parked and I was able to walk him in but even then he struggled going in to the classroom.    That was a little bizarre for me and typically his headaches have been in the afternoon (after scary nap terrors.)  So, I reviewed some literature related to an injection he is receiving daily and then I read this line, "if the patient experiences headaches, call your healthcare worker immediately."

Oops.

I made that phone call this morning.  (& then promptly forgot about it which is why I took a nap instead of researching or waiting for the phone call or doing laundry.)

I adore this specialist.  He calls and checks on Will himself.  When I have questions, he calls and discusses them with me as if he has nothing better to do with his day or evening.  I recently met another patient of his whom was in critical condition in the hospital once.  Despite not being on call, he knew his particular field of expertise might save her life so he didn't leave her bedside all night long.  That is an awesome doctor and I am so thankful to have him on our team.

So the nurse calls me back around 3pm this afternoon and says he wants us with another specialist immediately.  She used that word, "immediately."  I didn't quite understand what this particular specialist had to do with headaches.  She explained, "we are concerned his brain may be swelling."

Ohhhhhh. Got it.  Immediately makes sense now.

I got on the phone and found my mom in a grocery store preparing to have girlfriends over for dinner.  She bought her groceries and came over to sit with Ellie while she napped.  Before she could get here, my grandmother ran over to sit in the meantime.  (Thank you Mom & Gram!!) I called R just to let him know what was going on and he told me he would meet us there.  I texted a few friends to ask them to pray.  Brain stuff scares me.  Bone stuff does too but I guess I hear bone stuff a lot so it doesn't seem so foreign to me.  Brain stuff is kind of new for me and unknown and I fear what I don't understand.

I thought about the following things:  how often are the headaches?  Is there a pattern to them?  What other symptoms does he have (dizziness somedays).  I texted his teacher to learn when the headache ended at school.  I wondered if I had enough clean clothes in case we ended up in a hospital.  I wondered if I should pack Will's homework to do at the doctor or if that was pushing my luck and maybe it could wait for the morning.  I wondered if I should do the laundry.  I was glad I had washed my hair today.  I made my bed.  I googled some symptoms and his medicine side effects.  Note to self:  no googling or wikipediaing.

Then I woke Will.  He was very groggy but I managed to get him dressed and carried to his car seat.  I hated not getting to cuddle him after his nap.  He's an awesome cuddler.

We drove to the clinic for the new specialist who met us in the lobby.  Apparently these headaches are a big deal.

We then proceeded with an hour and a half of diagnostic tests.  He passed.  Thank you, God.  So not sure what the cause of the headaches are.  Possibly medicine related?  But the important thing is that they are not a sign of brain swelling.

The tests were somewhat brutal.  Perhaps Will picked up on both parents being there and being nervous.  He was scared too, especially when the doctor told him something would sting.  That didn't go over so well and it was downhill from there.  It wasn't that anything was particularly painful - it's just that it was scary and unknown to him.  And he sees a lot of doctors and gets poked and prodded a lot.  Plus he gets shots.  So he's not exactly super eager to spend time with yet another doctor messing with him.  At one point, the doctor told us that if Will didn't cooperate long enough, we would need to go to the hospital for anesthesia.  Will does understand surgery and anesthesia and that scared him more.  So he endured and we all survived.  Barely.

(Other moms of kids with differences:  what's the standard of behavior for things like this?  How do you teach your child it is okay to be afraid but not to resist you - especially when they know something painful is coming?  Normally Will (& Ellie too) do awesome with their doctors.  They engage in conversation with them; Will asks questions about procedures and shares concerns, etc.  They are often flexible with their naps and meals yet they do great (usually) with variety of doctors.  But they see a ton of doctors too so there is an element of fear with a new one & with somewhat scarier procedures.  What's the standard here?  What should I expect?  How do I teach him to just trust us and not to panic? This isn't covered in the "what to expect" books.)

I picked up Ellie from my mom and headed home with two exhausted, crying kids... one of whom was drowsy (yet awake) from medicine.  I grabbed a take n bake pizza on the way home to cook and when Will asked to go straight to bed, I agreed that might be good as soon as he ate.

But when I got home, I had somehow accidentally been locked out of the house.  I held the tears off and texted my mom to set out the spare key she had for me.  I reloaded the crying children.  And I called my neighbor to use her bathroom because I knew I couldn't make it across town.

But, then I couldn't locate the car key.  In the chaos of trying to get in the house I had lost it.  Awesome.

We searched the car.  We sat and sweated.  Finally, I gave up and texted R and asked him to come home from work.  He agreed but had to finish up some things since he wasn't planning on our little two hour break this afternoon.  Then I found the key.

We sat outside on the porch and played and waited.  My dear neighbor not only offered me her bathroom but she also put our pizza in her oven and made us a salad!  (I was a very needy neighbor tonight!)

The children are in bed.  I have had a glass of wine.  We are exhausted yet very thankful not to be in the hospital.  We are humbled at the fragility of the human body.  It is an amazing thing.  And I am reminded of several key lessons:

1.  Have awesome doctors.  Have specialists who call you back.  Have specialists who pay attention to your concerns.  Besides our first specialist (Dr. C) who calls me back and addressed this quickly, this morning at 7:15, the new specialist (Dr. W) called me with an idea as to the cause of the headaches.  He said he thought about Will all night and had an idea as to possibly another med related cause.  I am so thankful for doctors who take our cases personally and who care and worry and call!

2.  When the specialist seems concerned, don't panic but act fast.  When a specialist gets you in to another specialist immediately, note that it's kind of a big deal.  Don't panic.  Text your people.

3.  Don't blow off symptoms.  (I felt terrible when I told the nurse he had headaches several times a week for the past two weeks yet I hadn't called.)

4.    Do laundry more.  This way when your day gets thrown for a loop and you realize there is a possibility you will be in a hospital, you will have clean clothes.  Also make your bed.  My favorite trick is to throw dirty dishes into one side of the sink and "soak" them in good smelling soap.  It looks like I did the dishes without actually doing them.  (This has nothing whatsoever to do with my lessons of the day... just a friendly housekeeping tip from me.  It's all I have.  You're welcome.)

5.  Don't panic.  Do grab diet coke.  Or a glass of wine when you get home.

6.  Make a copy of the house key and start to carry it with you.  Also maybe give a copy to a neighbor.

7.  Find great neighbors!

Going to bed now.  I keep thinking I should sit and cry from exhaustion and the fear I experienced but, honestly, I'm too tired!  Again we are so relieved and thankful for how this afternoon ended.  The possibilities were scary for a little while.

2 thoughts:

ywilbur said...

wow, sounds like a scary day. JK does so well at all MDs and doesn't even cry at shots so no advice on not panicking or calming. Although having written that my eldest has tons of sensory issues and panicked all the time. Basically for him just didn't say anything until seconds before and NEVER would say 'this is going to sting'...Unfortunately I think I just yelled at him as in 'Just hold still already' and had staff hold him down. Now he's 15 and does fine with shots etc..I grew up with a dad who was dying of cancer...diagnosed when I was 4 and finally did die when I was 10...that (well mom) taught me to always take time to get some things together before panicking and running out the door: a good book, no gameboys back then, etc..

Cheryl Linder said...

Wow Katie,
Scary stuff! You had a terrible day that ended in chaotically and still managed to make it all sound like you took it in stride.
I also appreciate if the specialist doesn't warn them of painful things until they happen, but you have no control over that.
Love your doctors.
In years past, I would have given an arm and a leg for a specialist that cared and didn't blow me off.
I have researched some serious things and managed to find the problem myself and prevent long term damage on my own in some instances because no one cared enough to pay attention to my concerns.
I love our precious Lord that sustains and helps and provides especially on days like these.
Love you!
Cheryl

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