Friday, October 17, 2008
All that about a month in the clear….So we do the Evie dance….two-steps-forward, one-step-back!
After her gold-star visits with Cardiology and Pulmonology this week, she came home and promptly started misbehaving. The last two nights, her oxygen saturations have been low 80’s (normal is above 95), she’s developed a nasty, painful ear infection and we changed sheets three times last night because she started throwing up.
Both her Pediatrician and Pulmonologist have urged us to get her back to MUSC for a second evaluation of her heart sooner rather than later. Her chronic lung disease may or may not be related to a residual heart problem. They are putting her on oxygen over the weekend and trying to get the referral expedited to have her seen in Charleston early next week.
And just when things were going so well!
My heart is heavy. We have seen her far sicker. We’ve watched her battle much worse, but still it grieves me to see my baby fighting so hard. These unanswered questions keep me leaning hard into the Lord for assurance.
Right where He wants me, I know!
Psalm 62
5)Find rest O my soul in God alone;
My hope comes from Him.
8)Trust Him at all times
Pour your hearts out to Him for God is our refuge.
11) One thing the Lord has spoken, two things I have heard
That You O God are strong
and that You O Lord are loving!”
Wednesday, October 15, 2008
Happy 9 Month Birthday Evie Girl!
We celebrated with a trip to her Cardiologist yesterday and her Pulmonologist today…woohoo!! Her gift ~ a $2,000 shot to immunize her for the RSV virus. (Yes, you read that figure right.)
Whenever we check out at the Cardiologist, I breathe a huge sigh of relief. And then schedule the next appointment and think…….
the next appointment will be a milestone…..
two months out is a long time…..
…when we get there I’ll stop worrying about her.
But always, ALWAYS she’s full of surprises and keeps giving me reason to stay on my knees!
The last few weeks have been the first time in her life that she’s gone a whole month without emergencies, procedures, ER visits or tests. Thank you Jesus!
Still, her Pulmonologist has some concerns. While she has had a healthy month, she is taking drugs in “big girl” doses. They may be helping but the concern is that they may be masking the real problem. We talked today and are looking at the possibility of needing a heart cath procedure. A Catheter is inserted into an artery in her leg and threaded through to her heart to measure pressures. The most significant risk is probably the anesthesia itself. Her pulmonary issues complicate matters under anesthesia. So we begin dialogue with Charleston again.
Last night was one of those “golden moments” I wish I could bottle. She had woken and I brought her to bed with us. She lay sleeping snuggled between C and I with a glowing full moon bathing her in light through our window.
Perfect
Starkissed
Adored!!
Friday, October 10, 2008
Evie, our miracle baby.
The child has defied all odds and broken all the rules…why should a trip to Babies R Us be any different?
Yesterday I tried to return a pair of feety-pajamas that were given to her months ago. Because she wears a pulse-oxygen monitor on her toe at night, her little feet-sies have to be accessible. I didn’t go into all that, but just requested an exchange at the Customer Service Desk. The sales associate kindly told me that without a receipt, no exchanges were allowed.
Thats the policy.
Period.
Ok, I thought. I’ll just save it for a baby gift for a friend.
But then my mom called…in typical “perfect-mother-timing”. I told her my frustration. As the baby of four sisters, the hand-me-down pj’s are getting a little worn and I wanted to get Evie a new pair.
“Honey,” she said, “You go back and start with January first 2008 and show her Evie’s little scar and explain what a pulse-ox monitor is and help her understand why they need to make an exception.”
So I did. The poor sales rep!! I tried to condense it to the Readers Digest version, but it was clear by her glazed expression that I lost her somewhere along the way.
“Just a moment.” she responded, “I’ll need to check with my manager”.
A long pow-wow followed in hushed tones in the corner while I stood there looking like a flake. And Evie of course is babbling and looking like the picture of health!
Incidentally, the manager was very accommodating and we walked out of the store with a new pair of pink foot-less pajama’s.
Oh Evie…you are a high maintenance girl!!
Bathtime…just the sweetest part of my day!!
