When we woke up this morning we had braced ourself for our double booked day and expected the little wrench in our plans to not be a big deal. I went off to see Kelly and freshen up my shaggy mullet and didn’t really dwell on Ezzy’s unexpected doctor appointment her CF doc scheduled for her. He told us that he really needed her to be listened to by her normal doc and asked if we could get her in. Not the most convenient time, it was 15 minutes before both girls had to be at ballet rehearsal for their spring gala in a week.
Ezzy was bouncing all over the doctor’s office. Nervous energy probably from the fact her Saturday plans were suddenly changed as she saw her sister going off to ballet and her being dropped at the doctors. After going over the sickness she has been struggling with for the last 8 weeks the doc heard her let out a “small” cough. The doctor’s face changed and I informed her that was nothing compared to what I started hearing a day ago. Even after starting the heavy duty drug our island had to special order, Ezzy was getting worse fast.
After a throat culture we were sent on our way and told to expect a call shortly…
The call came, I was home, getting the girls out of ballet clothes and attempting to ready ourselves for the next item on the to do list. We haven’t been living in denial about Ezzy’s health. Being told to keep “living” was what we were attempting to do each day. So we planned to attack today as we have done the last 8 weeks.
In a conversation that lasted less the 6 minutes, we were told that Ezzy had to be admitted here at our hospital to start IV antibiotics until she could fly to Seattle Children’s on this upcoming monday/tuesday when a bed becomes available.
My mind felt like it got stuck on repeat, my words failed to form, my heart sank. When I gathered myself for what seemed like eternity, I asked the doctor, why?
Ezzy is run down, Ezzy does have a really bad cough, Ezzy has been sick for too long, but not like SICK. She still has had energy to pick on her brother, to baby Kyre after she had ear surgery last week. She took on the roll as Kyre’s nurse and still mustering the strength to fight nap-time when I saw her come home with bags under her eyes after school each day. Her spunk hasn’t waned even though her physical strength might have at times.
When we thought of lung exasperations, we thought they would look differently.
So lung exasperations typically happen 1-2x a year for most CFers, they require a 10-14 day IV antibiotic to try and protect the lungs from scarring and damage that lead to a decrease in life span.
After getting the dreadful news, I called Richard, called my mom and started to busy myself with house work until they showed up. As the tears fell from my cheek onto my shirt, I grieved the scary event that would soon be taking place in a 5 yr olds life as well as the realization that her much anticipated spring gala she has been practicing for would not be happening this coming Saturday. I called out to my Abba Father, we had words, well, I had words for him. I was mad, frustrated, just plain hurt. I finished folding the clothes and stumbled on her little dress that God delivered a direct message to me…
Thankfully her CF doc called us and talked Richard and I off the ledge and broke it down.
1. we need to be thankful that she hasn’t needed a tune-up in her 5 yrs of life = proof of the care we give her
2. she should feel better quickly and this route usually kicks the bad bugs’ butt fast
3. we didn’t do anything wrong, her body just couldn’t fight it and with each cold she was around, more bugs buried in her lungs
4. we are catching this hopefully in time before permanent damage is taking place
After expressing that we were having to drop alot of happiness off her to do list this week, our doc encouraged us to take her to the carnival in town and check in an hour or two later then we were originally told.
She had a blast! She got all the cotton candy she wanted, she nibbled her Carmel apple leaving mom to eat the other half
She suckered her brother into doing a “baby” ride with her…
just to ditch him when one of the “cute” boys from her class showed up and smiled. We did exactly as her CF doc told us to do, we gave her some memories to hold onto that will hopefully carry her through these next two weeks.
I listened to her ask to speak to her siblings on the phone tonight, each conversation was different. Cayden left in tears, Kyre in giggles, me in awe of her strength. Her request was to spend the first night in the hospital with Nana. Leaving mom and dad a night to be together before we are separated for awhile.
The hospital staff here have NO C.L.U.E. what to do with her and her enzymes, her contact precautions, her disease. We want to be at children’s where they understand and know what to do with CF. But we have to trust that God has every detail worked out. He made sure a friend is working at the hospital tomorrow unexpectedly, yay Kalli!
We know that when a room opens up for her, it will be because God has worked his details out with the right people and the right time is in place.
Please pray for our family, we really, really suck at being separated. We have a long hard week ahead with commitments and having Ezzy hospitalized is hard. Pray she gets a room at children s ASAP, the sooner she sees her specialists the better, KGH is totally out of her scope of care We are scared, nervous and heart broken because she is entering a hard situation with no understanding of what it is going to cost.
I was driving home tonight from an art class I scheduled weeks ago and was talking with God, I felt guilt about going, even though Richard and mom assured me to go because only one person needed to be with Ezzy. We were blessed by a friend who came and watched our kids so that Richard and Nana could do the change off. He is a Saint, the pic proves it!!
I was drawn to these words to a song as I sought God in the stillness, trying to hear him speak to my aching heart:
Your love oh Lord ,Reaches to the Heavens
Your faithfulness , Stretches to the Sky
Your righteousness, Is like the mighty mountains
Your justice flows, Like the ocean tide
I will lift my voice, To worship you my King
I will find my strength, In the shadow of your wings
Strength will be found Ezzy girl, rest in the shadow of his wings, lift your voice and worship our King who has made you for this moment.
4 thoughts on “The Tune- up”
Love and prayers are with you from CA.
All I can do is pray from this far away…but I know our God is connecting those prayers with your needs💖 HUGS across the miles to all of you!
Thank you Marlene