Lucky

Lucky. Incredibly lucky. That’s how we are all feeling today.

Four weeks ago Mary Kate came down with a typical virus…low grade fever, some aches, a general feeling of yuckiness…nothing terrible. About a week and a half later she started complaining of pain in the back of her legs (mostly behind her knees), pain that felt like sore muscles, similar to what you might feel after a strenuous work out. She limped around with that soreness for awhile and then started walking funny; like she was 85 years old, or like her legs were made of jelly. We were concerned, but mostly chalked it up to growing pains (which she has often) or stress (she had just started 7th grade), or thought maybe she had strained her muscles riding her bike or something. We gave her some Ibuprophen and that seemed to help the soreness, but she was still walking funny.

After about a week of this, and like every other hyper vigilant, concerned mother (which I am not), I just keep telling her that she had gotten into a bad habit of walking strangely and told her to snap out of it; I was sure that her funny walking was making her muscles even more sore. But then she started complaining of not being able to get around school very well. At lunch one day she fell on the stairs down to the cafeteria and almost got trampled by some 9th graders. That same week we went on a short hike for Family Home Evening, one that would normally be a stroll in the park for my speed hiker daughter. She began crying after walking only half a block and Mike was having to carry her up the trail (she fell coming down as well and couldn't seem to get back up). It was then that I become officially worried.

I was especially worried after Saturday when we went to the sheep dog trials up in Midway and she couldn’t get herself up the bleachers, couldn’t walk up small inclines to the different venues and was walking at a snails pace. Several times during the rest of Labor Day weekend she would be walking along (slowly, jelly like) and all of the sudden find herself on the ground, her leg muscles completely giving out on her. Her knees and elbows were scabbed and bloodied from falls and she started complaining of weakness in her arms. It was then I became officially terrified.

After doing some research on the internet (FYI: not something I would recommend when your child has some strange illness) I was a complete wreck. A sobbing wreck! I was convinced Mary Kate had MS, a brain tumor, a spinal blockage or something terrible like that. I had made a doctors appointment for the next afternoon, but in a panic moved it to the morning. I couldn’t wait any longer.

Dr. Vargo, a wonderful pediatrician at the clinic Mike works for who is very adept at figuring out mystery illnesses, thought that because Mary Kate had been sick with a virus a short time before onset of symptoms and because of her particular complaints had something called Gillain-Barre (pronounced gee-on ba-ray) Syndrome, an auto immune disease that affects the nerves that control muscle function. She was almost certain this is what Mary Kate had, but told us that we couldn’t be completely sure until some extensive testing was done to rule out other possibilities. So, off to Primary Children’s Medical Center emergency room we went and that’s when the fun truly began.

Mary Kate was incredibly brave as she endured extensive blood work, a lumbar puncture (holy yuck!), and a 2 hour long MRI to make sure her spine was clear of anything suspicious. After two days of testing we had a sure diagnosis of Guillain-Barre and she began a three day intravenous treatment using something called IVIG; a very expensive blood product, a wonder concoction of antibodies extracted from over 1000 blood donors, (keep donating blood people!). IVIG basically scrubs your blood clean of all impurities and fixes mal-functions. This IVIG is administered to patients with Guillain-Barre to stop the disease from progressing any further. Before IVIG was discovered as a treatment for Guillian-Barre people died from this illness. We are incredibly lucky to have this treatment. Thank goodness for modern medicine. 

We are also incredibly lucky because the progression of Guillian-Barre symptoms in Mary Kate has been slow. Very often people will experience a much more acute case of this syndrome, losing the use of their respiratory muscles and all other muscle function within a day or two, leaving them on ventilators and debilitated for months and months, with permanent nerve damage to deal with for a life time. (Our neighbor Keith B. across the street acquired Guillian-Barre after suffering from Swine Flu and has dealt with it’s effects forever more).

Recovering from a slow progressing Guillian-Barre (like Mary Kate’s) has a much better prognosis. We aren’t sure how long it will take (maybe three weeks, maybe 3-6 months, maybe a year) but at some point Mary Kate will eventually (we hope) regain all muscle function and be completely back to normal. In the mean time, physical therapy will be normal life for us. 

We are also feeling lucky today because we live so close to Primary Children’s Medical Center, one of the finest children’s hospitals in the country. Their slogan is “The Child First and Always” and they truly operate by that statement. We had wonderful care from incredible, caring doctors, nurses, physical therapist and specialists. I was blown away by how meticulous the care was, how well we were treated and the extent they went to to make Mary Kate’s stay as enjoyable as it could be under the circumstances.

After staying in the hospital for many days and seeing other patients in the rooms around us, some that have been living at the hospital for days on end, we also felt blessed and so lucky that Mary Kate’s illness wasn’t worse. Our hearts went out, in a very big way, to the patients and families who are dealing with illnesses of much more severity and duration. Our prayers will be with them everyday from now on. (Especially those in our family who are dealing with this scenario now).

We are also feeling so lucky that we have good insurance. As the bills start to flow in I know that we will feel even luckier when we see how expensive good medical treatment costs. My heart also goes out to those without insurance (or without good insurance) to cover the cost of their healing. Hopefully we can figure out something that works for everyone in this great country of ours so everyone can receive good care when their health is on the line.

We are also feeling incredibly lucky because we are so loved. There’s nothing like a scary illness and hospitalization to help you see just how loved you really are, and to see all the goodness and kindness of others unfold in front of you. Mary Kate, Mike, and I had so many phone calls, emails, Facebook messages, texts, visits, gifts, cards, flowers (thanks Aunt Laura, so beautiful), Skypes, meals, cars to drive (thanks Paul, that was super helpful) treats, tears, expressions of love, concern and support from friends and family, not to mention all those neighbors who took care of the boys while I was away and Mike was at work. I get choked up just thinking about it all. A deeply heartfelt thanks to everyone for every bit of it. The anxiety and stress of this ordeal was made much, much lighter because of all of you. I know we will never forget all the love that we have be recipients of.

(Grandma and Grandpa in New Zealand told Mary Kate to count up every time she was stuck with a needle and she would get a small gift for every poke. Needless to say, she has quite a few new items she didn’t have before. Mom and Dad…Mike told me to tell you that he had a flu shot this week. Does he get a gift now too?)

Personally, I’m feeling lucky for another special reason. Even though the circumstances were a little harrowing, I had the privilege of spending four solid days, around the clock, with my beautiful, kind, brave, resilient daughter who was a gem through this whole ordeal. Of course there were moments like this one…

…when things weren’t so hot; like when the IVIG was burning her veins or when she knew that getting a new IV was inevitable, or when the doctors had to pound on her legs and arms with little hammers over and over again to test her reflexes (she doesn’t have any by-the-way, so weird), but most of the time she looked like this…

…happy, patient and pleasant. We had some good fun together in the middle of it all. Being her mother is a privilege and a blessing. I’m so relieved that she is okay, you have no idea!

And most of all…we feel grateful to our Heavenly Father who hears our prayers, and hers, and yours in our behalf, and who answers those prayers. A Heavenly Father who gave us the blessing of the priesthood to help us in times just like these and who watches over us and sends comfort and blessing when we need them most. So many of those prayers were answered by the good people that surround us. We are indeed the luckiest.

So, so lucky.

Good-bye hospital. May we not see you again for a long, long time…or better yet, not ever again.

Stay tuned for a post about Sonja and Steven, our favorite fellow patients in the whole hospital, and what it was like when Jonathan and Jeffrey came for a visit. Good times!