Sunday, August 26, 2012

Witt's End

I am blessed.  I know this.  I know things could be worse.  I know this.  But right now, right at this very moment I feel as if I am going to explode.  I really do not feel like I can take a whole lot more on my plate.  It is full.  People are always amazed at how calm I remain through all that goes on.  The answer is God.  My faith keeps me calm.  The other thing that keeps me calm is that I have learned that worrying takes too much energy and I have exactly zero energy to spare.  But right now, right at this moment, I am pretty sure I have found where witt's end is.

Last week, Kenneth's mom fell off a stepladder and down some stairs.  She was taken to the ER (insert whole other long story here) and then transferred to another hospital with a neurosurgeon because the original ER saw a brain bleed on CT scan.  The second hospital said there was no bleed and sent her home with a broken wrist, stitches in her head, and some serious confusion and forgetfulness.  She will be having surgery on Tuesday to fix her wrist.  Since last Tuesday when this happened she has required around the clock care.  Tonight she will be staying alone for the first time but after surgery will likely need care again.

Carly starts school tomorrow.  I will be able to take her to school but I will not be able to pick her up.  I will be leaving straight from her school to take Anna to the hospital for her 48 hr EEG and MRI.  For anyone who has ever had a child in the hospital you know how completely exhausting this is.  More exhausting than the hospital stay is the thoughts in my mind about why we are having this stay.  For those who haven't read the previous post or who I haven't talked about it to (there are only a very few I have talked about it to because it is just too much) this EEG and MRI are in preparation for possible brain surgery for Anna because her epilepsy is medication resistant.

Kenneth had taken off work to be here with the other 2 kids while I was away with Anna and now the other 2 will be shuffled around because he also needs to be with his mom for her surgery.  I expect it to go well but she is no spring chicken and I fear the anesthesia may bring back the confusion she has had this week.

We went to meet the teacher night and when meeting Anna's teacher (who was already supposed to be prepared for having Anna in her class) I learned she knew absolutely nothing of Anna's IEP, epilepsy, potty training...None of it.  I had relaxed about school and was really thinking things would be fine.  Now I'm not so sure.  Her teacher, by all accounts, is a great teacher.  That is fantastic but the cross between the deer in headlights look and the oh shit look I got from her when the word seizures came out of my mouth is less than comforting.  So when Anna starts school on Thursday this is what I have to look forward to and deal with.

Our regular babysitter Christy who has kept our kids for 4+ years had to have back surgery and will be out for another 6 weeks.  She has already been gone over a month.  Poor girl.  It is not at all her fault and she just keeps apologizing.  We had a fill in sitter but she had to go back to school.  Kenneth's mom was our back up and is clearly no longer the back up.  So on top of all of this other crap we are babysitterless.  It's hard to find a good sitter for any kid but factor in taking Anna to and from school for 1/2 day pre-k, and her seizures, and potty issues...and finding a sitter is next to impossible.  Thank God for an amazing boss and flexible job that I can hopefully work opposite of Kenneth's schedule for 6 weeks so somebody will be home.  It is not ideal for anyone involved but it is an option I am thankful for.

Need I go on?  I would, believe me, but I need to go pack and feed the kids and make sure all is ready for me to be gone.  Oh and I'll probably need a beer or 2 also.

Thursday, August 9, 2012

Being A Little Too Human

How did a post a day become a post per week become a post every two weeks become a post every month?  3 kids, that's how it happens.  I love them so much but they keep me so very busy.  I wouldn't trade it for anything in the world!  But do I regret the hysterectomy and ending the chance to ever do this again?  Absolutely not!  I can say it was probably one of the best decisions I have ever made (except for marrying my husband and having 3 beautiful children).  I am still exhausted though.  SO very exhausted but it's a totally different exhaustion than it was before.  Before it was the can't keep my head up kind of tired from the anemia and now it is the kind of tired where my mind just won't stop.  I think about how blogging used to relax me and now when I think about blogging I realize I can't even pick the thoughts apart to record them.  So here's the bottom line.  I'm scared.  I had talked awhile back about Anna's neuropsych testing.  At the time I just thought we were having it done because it would help us to know strengths and weaknesses and how best to help her learn.  And all of that is true.  It did/will do that.  It will help her get services at school.  That was the bottom line for me.  But still, it broke my heart to be told she has an IQ of 78 which falls in the borderline range.  It broke my heart to see the written words "cognitive disorder with deficits in mixed receptive-expressive language disorder, visual motor, visual-spatial, and fine motor skills, short term memory/working memory, and executive functioning."  It broke my heart to be told that setting up a trust for her for when she gets older wouldn't be a bad idea.  It is not that I am letting them tell me what my kid will not accomplish but what it is doing is making me take a hard painful look at reality.  It has been hurting my heart but I keep going on.  Fast forward a few weeks.  I notice Anna is having many more seizures.  She is falling more and her whole attitude is different.  We stopped the periactin in hopes that was the problem and it has helped some but that wasn't all of it.  So I called and spoke with her neurologist and I was hoping for a med change.  Wrong.  Instead we are doing a 48 hr video EEG and another MRI which of course requires anesthesia (this in addition tot he anesthesia she will undergo for the root canal she needs).  At Anna's last neurology appointment we had discussed what another medication failure would mean.  It would mean that the next step could be surgery to remove the offending place in her brain.  When I left her last appointment I was not even rattled by that because I knew it wouldn't come to that.  But here we are, with another medication failure and continued seizures despite trials of maximum doses of 2 AEDs (anti epileptic drugs).  So now I see why else the neuropsych testing had to be done.  It was all in the planning for what Dr. Hernandez knew was coming.  It has to be done prior to the surgery, as does the 48 hr EEG and special type MRI that has been ordered.  I cannot even discuss it with Kenneth.  Don't fault me for that. I'm doing the best I know how to do.  I am always the one to make the medical decisions and I just don't know if I can make this one.  Do I allow the surgery and the great risk that comes with it in the hopes of a cure and the hopes of stopping the damage the seizures are causing to her memory and behavior or do I let her continue to have the seizures and just keep trying different meds?  I don't know.  I don't really care for either decision and the thought makes me want to puke.  So I am scared.  I know God will carry us through this.  I know he will.  He can move mountains.  But today I am feeling just a little too human.  As for her starting school, well, that's a whole other post!