Have you ever head the word mercurial?  I honestly had never heard this word. I was actually looking for a good  synonym for the word quick when I came across it.   Zine says it is a software version control program.  It allows multiple people to work on the same code and all the changes are able to be put together.  It is a very dynamic, crazy world of computer programming.  However, it actually is an adjective and it means changeable, flighty, erratic, animated, lively, etc.  It is often used to describe someone that changes moods quickly.  In some ways, that was exactly what I was this week, definitely changeable, erratic, lively.  You can thank me later for the vocabulary lesson.

Trip To Ohio

Chloe and I made our way to Columbus, Ohio this week.  We drove to Nashville, TN, caught a flight directly into Columbus on Tuesday.  Our favorite taxi driver picked us up and delivered us to the Ronald McDonald House.  We have come to absolutely love this place!  Early Wednesday morning we began our day at Nationwide Children’s Hospital.  

Glimpse Into a Day in Ohio

First, Chloe had a cardiac MRI which she doesn’t like.  It’s your typical MRI machine, but she has stickies all over her chest, and she is given commands to follow.  Breathe in, breathe out, hold breath, etc.  She says it’s very difficult.  She also has to have contrast for this MRI which means a stick!  Thankful they only had to stick her once this time.  Upon completion of this study, we then proceeded to the outpatient clinic where they conduct clinic visits.  Over the course of a clinic visit, Chloe sees about 7 or 8 medical professionals.  She completes numerous pulmonary testing as well as strength testing.  It is a long full day for her.  Typically, by the end of this day, she’s pretty worn out.  However, on Wednesday things didn’t go as planned.  It was a very atypical day for us!

We made a little snapchat video for fun.  However, once we got busy, I quit snapping!  But maybe you can get a glimpse into our day!  I apologize for sideways pictures.  I am always forgetting I can’t do sideways in snapchat!  Or if you can, I don’t know how!!

When doctors are sick…

I received a phone call early Wednesday morning that Chloe’s doctor is sick.  Actually, we typically see the PA for ongoing care.  Dr. Mendell is more of the researcher I think.  I love him!  He will be talking to you and then will say, I think I’ve lost you.  And when that happens, he starts drawing pictures.  He is a world renowned doctor in duchenne muscular dystrophy.  We also love his PA that works a lot with us. Fantastic care we receive.  But when you travel as far as we did, and your doctor is sick, it just complicates life.  Things happen that you can’t control, so we couldn’t be angry.

We completed our clinic visit with a doctor that is unfamiliar with Chloe.  Therefore, he asked a lot of questions that I just dislike answering.  Most doctors find Chloe a unique case and they want to know all about her history.  He did answer my question about the new drug that was approved and the answer is the details are still not all worked out and considering a change is not really an option at this time.

Not only were we missing our main doctor, we were missing the cardiologist as well!!!!  This was the doctor we really wanted to see.  Now, we must wait.  When she gets a chance, she will be reviewing Chloe’s heart testing and calling us with the results.   This is all we need but it stinks to have to wait to hear the results.  So for Chloe and I this trip seemed like a bust!  We did get the testing done which is the most important part of the trip, just not all the results.  We also got her MDA camp physical done so it wasn’t a waste of time…just very different than normal.

Finally, one of our doctors was there!

We did see our regular pulmonologist!  Details of a sleep study are being worked out.  This study would measure what needs to be measured to know if she needs to change from a C-pap to a bi-pap.  I would try to explain the what needs to be measured, but it’s just easier if I don’t.  A lot of MDA patients need bi-paps instead of c paps.  However, her pulmonary function tests are good so it is hard to know for sure without measurements.

Here is where Mercurial Mama shows up.

Since things were quite different, we finished up early.  Not only did we finish mid afternoon, but Chloe wasn’t exhausted as she usually is.  Therefore, I have the brainstorm…I wonder if we could get home tonight!?!?!?!  Our flight wasn’t scheduled to leave until Thursday at 6:25 pm.  That way we could have direct flight, which makes the trip easier.  So if seats were available, maybe we could get out on the 6 pm flight Wednesday instead.  I had to pay a little extra, but we made the change and got scheduled for the 6:25 flight.  Yippeee!!

Once our favorite taxi driver delivered us to airport, we managed security just fine.  No bags pulled or anything.  I think we are finally figuring out the flying routine.  But then the delayed flight words happened.  If you have flown much, you know the more delayed flights get the more stressful flying gets.  Thankfully, an hour later, we were on our flight and headed to Nashville.

Shuttle to our car and on the road.  We pulled in our driveway at 10:15 last night.  By this time, I am so exhausted I could cry.   I didn’t sleep well last night but enough that I felt some better this morning.  However, at 9 am, I looked at the guys and said, “I need a nap.”  Chloe has been in her bed ALL day today.  Hopefully, we will sleep well tonight and feel much better tomorrow.

Why be mercurial?

First, I had left Krisann here with the guys.  She typically struggles a lot when I am gone.  She was very upset that I was going without her.  So I felt the need to be back for her.  Second, Zine receives help from me but when I am gone, he struggles to receive help.  Therefore, I feel the need to be here for him.  Third, the weather was supposed to be stormy about flight time on Thursday, and I did NOT want to get caught and delayed by storms.  Lastly, Krisann had a performance this afternoon at her little Fantasy Class she has been taken.  Now, it is NOT huge production to say the least but it was important to her.  I desperately wanted to be here and see it.

You know that mama heart comes out again.  And mamas just try to make all things work.  I often say, I need two of me sometimes.  If only, that were as easy as snapchat.

But it’s not that easy, so mamas do what we can do to make all things work together.  And if that means earning the title of mecurial…then so be it!