Monday, April 25, 2016

It takes a village...... of specially trained people

As we near the end of our time as a family of 3 and look forward to July when baby #2 will arrive, we've started to do some reflecting and planning.  Like every mom, I've wondered "when will I go into labor?", "where will Greg be?", and most importantly "who will watch my other child?"  Every parent has this to worry about, but for us, it's an even more loaded question.  I had started to make some tentative plans for Madelyn, and had plans to write up an instruction manual, if you will, of what she needs in a typical day.  I had plenty of time.... July is forever away!  Well, last week it became urgently clear that we need to have that plan written now.

I woke up not feeling well last week and ended up asking our former nanny to meet me at the clinic- Maddie had a doctor appt already scheduled for that day and she's my priority.  Like most moms, I thought I'd power through the morning, ignoring my own issues, and would be fine.  Our nanny would be there to help with Maddie if I needed it.  As the morning progressed, I ended up feeling much sicker and found myself in the OB clinic. The whole time I was thinking, "what is going to happen to Maddie?".  Greg was an hour and a half away for work.  Thinking we were just going to the clinic for one appointment, I hadn't packed any medications or tube feeding supplies for Maddie.  As I lay hooked up to the fetal monitor, my mind was focused on getting help for Madelyn so she could have her needs met at home.  It was then I realized that since I am currently a stay at home mom, I've also made myself the day nurse, the overnight nurse, the nanny, and the Madelyn administrator of the house.  This is a problem when that one person becomes quickly ill.  We are fortunate to have both sets of grandparents living in town; however, neither have cared for Maddie without my explicit instructions of how to use the feeding pump and what medications to give and when.  And at that moment, I didn't have the time or ability to write out the plan I would normally leave for them or a sitter.

Enter my best friend.  If something were to happen to me, she would be the one to know what to do for Madelyn, without my instructions.  But, it was a Tuesday morning and she was at work.  I sent her a text about what was going on, and without me asking, she said she would be leaving work to come to the clinic.  She met our nanny in the lobby and took over with Maddie.  She called her husband, he left work, and he picked up Maddie, along with her feeding instructions, and took her back to our house.  Maddie was taken care of.  My friend waited for me and we were both relieved to know that everything was fine with baby #2.  Greg and I couldn't be more grateful for this couple and the friendship that we have.  However, this incident made me realize that we need more people in our village who are "trained" to take care of Madelyn.  She's not the type of kid who you could just make a PB&J, turn on a Disney movie, and wait for the parents to come home :)

All is well again in the Payne house.  Maddie is bouncing back from a sinus infection, and baby #2 is growing and kicking away.  We now have a sense of urgency in making sure the people in our lives know how to care for Madelyn.  Next weekend, we'll be having both sets of grandparents, as well as our super hero friends over for a Madelyn training session.  As I write this blog post, I'm also writing an ever-growing list of "things you'd need to know with Maddie".  I'm sure the hand-outs will be top notch.  In the about me section of the blog, I wrote that I wanted to document our journey as parents of a special needs, medically complex child.  We are continuing to discover challenges we didn't know we'd face, but also moments of joy we didn't know we'd celebrate.  This past week has been a bit of both.

As a quick plug for future childcare- if anyone knows a nursing student, retired nurse, someone in a related field, please send them my way!  This mom is planning to go back to work half-time in November, and Madelyn is yet to show any interest in school psychology :)  We're always looking for people to add to our village.

 Who wouldn't want to care for this sweet girl?
"What?! I've only got 3 months left as the only child!"

Monday, February 29, 2016

4 months without seizures!

I've been wanting to write another post and have been struggling with what to talk about.  Would a post about epilepsy be interesting to people who have no personal connection to it?  Well, my dear friend and fellow blog writer said to go for it ;)

As I recently posted on Facebook, Madelyn has not had a seizure in 4 months.  This is HUGE for her.  Prior to this, a typical day for Maddie could include five, 20 minute seizure clusters.  That is a lot for one little body.  Our life had become wrapped up in seizure management- watching for signs of one to start, timing its duration, questioning when to intervene, etc.  We carried our Diastat everywhere we went, just in case.  Our two babysitters had constant reminders from me of what to look for and what to do.  Complex partial seizures can be hard to spot, but we, along with our close circle, got pretty darn good at recognizing them in Maddie.

I remember starting in the school district and undergoing the required medication and health safety training.  My goal was to get that checked off my to-do list, and move onto something "more relevant" to what I would actually be doing everyday at work.  Little did I know, that I would some day be able to teach that seizure portion of the training in my sleep.  Diastat seemed scary and foreign at the time, but now it's just like a pen or chapstick hanging out in each purse and diaper bag we carry.

In my first blog post, I wrote about Madelyn starting a new seizure medication which resulted in a 2 week stay at Children's Hospital.  It essentially sedated her to the point of resembling anesthesia.  Well, fast forward to now, and that same medication is keeping her seizure free...... and conscious.... most of the time ;)  I stay in constant communication with our neurologist's nurse.  We talk weekly about dosing, noticeable behaviors, sleep time, awake time, appetite, etc.  Managing her seizures is not easy, but with hard work, it has paid off.  There is no feeling like being on an airplane or in a crowded restaurant and knowing that your child is about to have a seizure and there's nowhere you can quickly go and nothing you can do about it.  We don't have that fear anymore, and that makes all the work/appts/travel/hospital stays worth it.

I am shocked by how many page views my first blog post has had.  The ticker currently reads 2,544 views.  Because of this, I think it's important that I share these experiences.  I am in no way an expert in children with complex medical needs.  But, I've gotten to know quite a bit.  The most crucial thing I've ever done for Madelyn is to get a second opinion.  Locally, options are very limited in pediatric specialty providers.  I used google to find our current neurologist and epilepsy treatment center.  And, I really feel that it has saved Maddie's life.  Our pediatrician had told us that Maddie couldn't go on having 5 seizures per day, eventually something terrible would happen.  It's not sustainable.  But, there was no one here who seemed to be able to help.  Thank god for the internet because that's how I found Minnesota Epilepsy Group.  If you are even remotely curious, I would suggest doing a quick search of their website, .  This clinic is comprised of the leading neurologists and epileptologists in the country.  They are the only Level 4 epilepsy treatment center in the Midwest, and they just so happen to be less than a 3 hour drive from here.  I can't convey how good it feels to be with a medical team that is the best at what they do.  I could go on and on about the benefits of working with this team.  But I'll leave it where I began.... Madelyn hasn't had a seizure in 4 months.

If you or someone you know wants more information on our seizure experience, please contact me.  I feel so passionate about sharing this.  We couldn't accept that Madelyn having uncontrolled seizures would be a part of our "normal".  And now it's not.  This may not last forever, but right now, we'll take it and enjoy the calm.