Tuesday, January 04, 2011

I Need an Instruction Manual...

Parenting is hard.  I should know, I have 5 kids...and no, none of them were born with an instruction manual.  You can read as many books as you want to to prepare for that baby.  You can read about all the milestones.  You can talk to other parents to figure out how you should be raising your kids.  In the end, each of those kids is different.  Most of them with not be able to fit into the "professionals" chart.  That is what makes us unique, but that can also put so much pressure on us parents.

We spent another night in the hospital with Faith.  This is becoming such a regular occurence, that the nurses know Faith by name and we joke around with them and the paramedics.  I realized last night, how callous I must sound to people who don't know me.  I can joke with the best of them, and I realized how cynical I have become through this journey...something I will have to keep an eye on.

She had a 4 minute focal seizure last night and it turned into a 16 more minute grand mal seizure.  She had her ativan protocol of .5 at 5 minutes and at 10 minutes.  We called 911 at 15 minutes and her seizure stopped at 20 minutes.  We went to the hospital, because we were worried about a subsequent seizure, like she had on Christmas eve.

Anyhow, this is the moment in my life where I wish we had a manual.  I wish we could just be told "you should do this" or "this is what is happening next"...I want to stop having to make these decisions.  I don't want the responsibility of this childs future on my shoulders.  We are at a crossroads where the decisions we make now are going to impact her for the rest of her life.  The decisions are mostly health related and will end up with potentially horrible effects as she grows into adulthood.  I don't like this responsibility anymore.

You may be worrying now, as you read this...but I can assure you, I am just at one of those places again.  I always get past this stage and all is well after I digest our new circumstances...but right now, I need to vent some of how I am feeling.  And I am not posting everything that goes on here, some things are still private...this is just what I am willing to share:-)

The decisions we are needing to make right now include:

Should we get a portacath so that if and when we go to the hospital (which is becoming greater and more often) the nurses can have a direct line for blood work and hydration.  While she was still sleeping and groggy from the ativan they put a line in her hand.  It took two pokes and me pinning her down, which was hard...or like on Christmas eve when the did the Intraosseous Access through her leg bone.  Having a PAC will allow them to just get right in there, no matter what or how she is feeling.  So, now we are researching this option.  Our questions are:
  • What are the risks?
  • How does the procedure work?
  • How long does it stay in place?
  • What are the benefits?
  • How did you like it? (if you have experienced one personally/your child)
  • Would you use one again?
  • Can my child still swim, bathe, participate in physical activity?
The other decision is switching medication.  That would mean weaning off trileptal, going through the unknown for the next 6 weeks...again...not knowing if this next medication works properly or not.  These are the thoughts and questions I am having regarding this decision:
  • Do we really want to go through this again? 
  • If trileptal isn't working, what should we use instead?
  • The doc suggested dilantin, but I don't like the effects of it...
  • Do we keep her on trileptal and add another medication?
  • Should we look at some kind of diet change? High sodium? Gatorade to assist in potential dehydration?
  • What other options does someone with epilepsy/seizure disorder have?
  • If you are an adult and have lived with epilepsy since childhood, what would you ahve wanted your parents to do differently?
See...I wish this child came with an instruction manual.  I feel like I am left with these decisions for this little life, and if I screw up her world screws up too...I wish we weren't going through this.  I wish my child didn't have to go through this.  I wish kids, all kids, could just be kids and not be sick or have any illnesses...

In my own perfect world, that is how life would be...


  1. I am a nurse via my education, however, my jobs never took me to peds. I am hanging on every word of your story and wish I had some great words of wisdom to impart. But, I do not. My husband is also a nurse, but, we have only worked with inmates and elderly. Our hearts go out to you and your family. We will keep you in our prayers that you all will make the right decisions.

  2. I'm so sorry for what you are having to go through. I couldn't imagine having to make these decisions.

    Little girls should only have to worry about what toy they are going to play with next. And their parents should be able to just enjoy their childhood.

    I have no advice or answers, only hope and prayers for your family. Have faith that you will make the best decision for the time.

  3. I'm sorry you are even having to have these moments. Parenting sure can be hard sometimes. Heck, life in general can be too.

    To answer at least a little of your questions about the portocath though, my mom has one. She got it in 2009 while undergoing chemotherapy for lung cancer. It can be removed, but they haven't suggested it yet, because there is a high chance of recurrence in her case. But it is a surgery, so any risks there are from anesthesia and surgery do exist. After it heals over though, it has been such a blessing. She didn't need to be poked and prodded for IVs at any time - bloodwork, etc. All done through the port and just a minute stick of the needle going through the skin into the port. She'll be the first to tell you that she didn't want one, but she was sooooooooo glad to have done it. Yes, your daughter can still swim, bathe, etc with one in there, as the skin heals right over it. It is slightly noticeable, depending on what she wears, but kids are so easy to adapt to anything they have to deal with.

    I hope this puts your mind to ease just a little. Hang in there! Best of luck to you and your family!

  4. Oh Ruth, I feel as though I could have written this. Ya, where IS that damn manual anyway? ;) Avery (4 yo) is also on Trileptal. It worked at first, but soon break though seizures occurred. Our ped neurologist added a once a day 10 mg tablet of Clobazam to her meds and so far, so good! Good luck and feel feel free to email any time. :)

  5. Hey Ruth, just catching up on some blogging reads and came across this post.

    Angelica - Our 13 year old has a IVAD - same thing I believe and it is honestly AMAZING. The surgery to put it in was uneventful and quick and once we put the EMLA on, she has no problems getting pricked.

    In the oncology clinic and ward, EVERY child has one (young and old) and it makes life SO much easier.

    They access her, do what they need to do and then de-access her when they no longer need access.

    The needle prick heals over so quickly and she can do ANYTHING and EVERYTHING that she wants to do. It's literally a life saver.

    Our experience,has been very positive.

  6. in answer to your questions...it can stay in for years. Some of the benefits are easy, correct, quick access, no worrying about the line coming out or slipping. Obviously, we love it. Hate to have to have, but love the benefits that it offers. Yes, if we needed to use it for either Angelica or any of our other kids, we'd do it. Yes, the kids can do anything and it's virtually indestructible. Hope this helps in some way.

    Sorry, I have nothing to offer re her meds, but I trust that God will lead and guide with his peace.

    Love, Joy and Peace for 2011.