Wednesday, April 27, 2011

Living a somewhat normal life amidst the medical chaos

Abby's soccer season is coming to a close with next week being her last week of practice and games. I have to say that this is the first time I will be sad that it is over for a while. It has been so much fun seeing her skills blossom so drastically over the past couple of months. She finally gets it. She loves it. And she's really good.
She started the season timid, confused, and frustrated. Although she has played soccer for a couple of years, this was the first season she has truly been taught how to play the sport instead of just being taught to kick the ball to the goal. Granted, I do think that a lot of this comes with age...she is at an age and intellect to be able to understand rules and moves and strategies better. But I do think a lot of it has to do with the great soccer association we started with this year as opposed to other years.
She's ending the season confident, aggressive, and having an absolute blast on the field. And man, it is so much fun to watch her play! She has excellent control of the ball most of the time and will take off down the field in almost a full sprint to score a goal. If she breaks away, she will almost always score. That kid has one of the longest strides I have ever seen. She is also excellent on defense, even doing a slide kick tonight as a last ditch effort to prevent the other team from scoring (we have no goalies at this stage, and the slide kick worked).
Tonight, she scored 4 goals. It will be a little different for her next year when she moves up to 4 v 4 games complete with goalies, but she is looking forward to continuing in the fall. And I am looking forward to cheering her on from the sidelines.We do try to live the most normal life we can amidst the medical chaos in our lives. The girls participate in soccer or ballet, school, different events, birthday parties, and play dates. I used to roll my eyes at Hillary Clinton's comment of "It takes a village to raise a child." I don't really know why I would roll my eyes at it other than the fact that she was the one saying it...but in our life, that statement rings true. It takes a village to raise my children. Since we have no family in our immediate area, we rely on the aid of friends that help us by keeping, shuttling, car pooling, and picking up our girls from their various locations. We are so very thankful for these precious friends...there are simply no words that are adequate enough to explain how much we care for and appreciate them all.
So onto the medical of the hardest parts of the medical system is miscommunication. It adds frustration and anxiety to the parents who are already overwhelmed to begin with. Unfortunately, when dealing with multiple chains of command in the medical field, it is pretty much impossible to go unscathed by the frustration caused by miscommunication at some point.

Case in point...we were informed a couple of days ago that Nate would be undergoing an endoscopy at our outpatient surgery center Thursday morning. My concerns that he probably wouldn't be approved to have the procedure there due to his complexities were met with confusion and quite a few phone calls to different departments. I finally spoke to an anesthesiologist in the center yesterday, faxed over our protocol, and was met with an early morning phone call this morning saying that Nate's procedure did indeed have to be performed at the hospital and with an admittance. Further phone calls put him in for the procedure next Wednesday morning, pre-op Monday and possible admission for fluids Tuesday night, but she would get back to me. A good plan, in my mind...and I was really impressed that they were all so vigilant to the complications of this disease and how it can affect some kiddos.So, I thought all was well with the plans until tonight during the kids' bedtime when we received a call saying that Nate's procedure was scheduled for tomorrow at 9. Yes, it would be at the hospital. She had to make sure he could have fluids 2 hours before hand instead of the normal "NPO after midnight" rule, and that was granted by the charge nurse. This is all a new plan to me, and I honestly won't be surprised if we get there and get turned away. I don't know...something just doesn't seem there have been way too many irons in the fire. Thankfully, as long as he is able to have some gatorade or apple juice in the morning and they are able to follow the anesthesia protocol given to us from his mito doc, I have no concerns for his safety. But, the lack of correct communication is exhausting and frustrating.
Add into the mix that we received a large bill this week for some past genetic testing that insurance denied, leaving me to try to sort out where it all went wrong...and trying to move over all of Nate's maintenance prescriptions to an insurance mandated mail-order program and being met with problems along the way...well, all of this makes me want to literally stick my head in the sand and wait for the storm to blow over. It does all get to you at times.
When I was going through my emotionally-charged teenage years, there were oftentimes that I would cry myself to sleep for no apparent reason. Hormones are tough when you are 15. But I distinctly remember telling myself in those many snot-fests that "tomorrow will be another day, and you'll forget the things that got you so worked up today." And thankfully, this was most always true. I would wake up with a smile on my face and with little recollection of why I was so emotional or frustrated the night before.

The same rings true for now as well. Although hormones have been replaced largely by the stress of the world, tomorrow will be another day. I will wake renewed and ready to tackle the tasks at hand.


Sarah on April 28, 2011 at 12:50 AM said...

Love friend! You are awesome! I'll be praying for all to go well tomorrow!!!


Kyla on April 28, 2011 at 5:50 PM said...

We've so been there with the medical miscommunications. Before KayTar's first MRI, there was a mix up because she was scheduled with nurse anesthesia in spite of her status as a puker (which made nurse anesthesia a no no). Turns out, they had entered her name with a misspelling and had started a whole new medical record for her! Ugh. We got it sorted out, but it took several more weeks for her to get scheduled appropriately.

Good luck tomorrow, I hope it all works out fine in the end!

Amanda on May 2, 2011 at 10:56 PM said...

I hope the procedure goes well and with smooth admission. I would love to chat sometime as our son goes to Shands for some of his care and my husband and I are UF grads but live up near Destin (panhandle area). Email me sometime at if you have a sec. We use Dr. S in Atlanta so far for the mito following but are considering Houston..would love feedback.

skye on May 4, 2011 at 10:14 AM said...

I so feel you on the insurance and medical chaos. It will be okay. You know this ;)

Dani on May 16, 2011 at 8:29 PM said...

Looking at the first picture of Abby, I thought "When did she get so tall, we see her at least twice a month?"

Hope everything gets straightened out with Nate's doctors.

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