Matter of Heart

Quarantined for Christmas

Thursday, December 25, 2008

Evie’s test results are back. Another UTI. The doctor said that one of the two bacterias they found is e-coli and is resistant to both the antibiotics we treated her with last time. So, she’s on a new prophylactic antibiotic and will have to have another cath in a couple weeks to see if its cleared.

Tuesday morning we were packed to go to Atlanta to be with my family for Christmas. We loaded the kids in the car and called Evie’s Pediatrician to see if she’d take a look at her before we went out of town (Evie woke up that morning sneezing green gunk). The doctor took a thorough evaluation of Evie and we discussed the multiple infections she’s had in the last couple months. Until we meet the Immunologist, we cant confirm that Evie has an auto-immune disorder, but at best, her immune system is very compromised from repeat back-to-back infections. The doctor very patiently talked me through Evie’s fragile health and said that frankly “it just is not in Evie’s best interest to see anyone.” I was so grateful for her making that call, but still, my heart sunk. We’ve so been looking forward visiting my family…
to spending the holidays with a house-full of cousins in my parents beautiful home…
(my family with spouses and children totals nearly 30!!)

The thing is, its not as simple as bubble-wrapping Evie…its four siblings and a daddy that travels and a social mommy that carry germs into the house. The doctor said it takes 4-6 weeks of being really healthy and protected to reset Evie’s immune system. We all have to be committed to cutting out exposure and hibernating at home for a while. So, that’s our new goal. I dont know what it looks like. I wont be able to put the kids back into our homeschool co-op in January. C is trimming back his travel schedule. I’ll have to postpone her little first birthday party Ive been planning.

I called my mother a little weepy. Christmas wouldn’t look like we’d anticipated. But I couldn’t dwell there for long. Surviving all Evie has frames life in a new light. We have several little “heart friends” who’s loving families cant be with them today. Little Lindsay is in the hospital waiting for a new heart. Precious Annabelle, Hassan, and Gracie are spending their first Christmas in glory, surrounded by Angels singing the praises of their Creator in Heaven.

I am so grateful she’s with us.

I cant complain for a minute.

Any sacrifice is so immeasurably worth the joy of getting to take care of our sick little girl at home on Christmas. Will post pictures later. Our day has been simple. Quiet. (well…relatively with 5 kids) and full of blessings. We’re praying God would strengthen her in this season of rest. That this New Year would greet our little one with peace and hope and complete healing!

11 Months Today

Thursday, December 18, 2008

…and what a day!

My precious friend Rebecca (Annabelle’s mommy) knew that I wasn’t as tough as I’d like to think I am and insisted on going with me to Evie’s procedures yesterday to support me in C’s absence. A good thing too!
The ultrasound of her kidneys was fairly uneventful.
The cath procedure was another story. They mentioned at Admissions that they typically sedate patients because its so traumatic. Because of Evie’s complicated history however, sedation wasnt recommended for her. So she just had to be a tough girl.
After strapping her to a barbaric board on the radiation table, they tried to cath her. The Physicians Assistant quickly saw that this 18 pounder was a little spit-fire and called for an extra set of hands.
“You’re going to need it” Rebecca piped up!

It was quite an ordeal to get it in. Evie was fighting with everything she’s got and quite frankly, was winning. Twice, she pushed the catheter out. When at last they got it in and filled her bladder, we prayed for pee so they could get the x-ray pictures they needed.
The PA remarked that in all her years of doing this proceedure, she’s never had someone fight her so hard.
That’s my girl!
Then this morning, little Missy woke up with heavy breathing…her classic symptoms of fluid on her lungs. By the time she got up from her morning nap, she needed oxygen, was running a high heart rate and had a fever of 102.0, so we headed for the Pediatrician. After 2 hours there, we were sent to a clinic to do an x-ray of her lungs and draw a bunch of bloodwork. In addition to
and Cardiologist,
we are adding an Immunologist and Geneticist to her list of doctors. The work-up will go to them to begin looking for immune disorders and such. Since we didnt get to the clinic before cultures were picked up by the currier, we have do go do the same ordeal AGAIN tomorrow! Baby dearest went to sleep with a very uncomfortable adhesive baggie that is supposed to be collecting pee for the lab work. As if she weren’t miserable enough already!


Thursday, November 27, 2008

We met with Pulmonology in Charleston today.  Aside from it being the busiest travel day of the year and a nightmare to be on the road, it was a good visit!  

We spent nearly three hours at the hospital and feel that Evie’s case was reviewed in detail.  Doctors concur that when Evie gets sick, her symptoms indicate Pulmonary Hypertension and Congestive Heart Failure.  The good news is that when she’s well, she is a beautiful, happy, thriving baby!  The plan as of today is to carry on and continue meds.  We will not introduce Viagra at this time.  Routine ECHO’s will give us indication if her pressures are continuing to rise, but the hope is that this too, time will heal!  We were urged to keep her away from crowds and healthy through the winter months as even a common cold sends her spiraling down.  She is plumping up (her pediatrician commented on her cute dimpled thighs this week:-) and the hope is that weight gain and growth will accommodate healing!  Time will tell.

We had the sacred privilege of getting to deliver some Annabelle Baskets to PCICU while we were at the hospital.  (See Angel Annabelle on sidebar – this is a precious girl and ministry that is very dear to my heart!)  My friend Rebecca began this ministry to heart-babies and allowed me to deliver a dozen baskets that she assembled to celebrate babies in ICU over the holidays.

Turning in tonight very thankful.  
Full of thanks!
God has been gracious again and we know will continue to see us through any rough waters ahead.  For today, we praise the Master Physician for His continued hand upon her life.