The Time Warp Week: The Back Story and the Nitty Gritty

So, last week, doing normal life at home after our crazy previous three weeks, I noticed that Lilly was starting to act a little whiney and clingy. Didn't think much of it...we all have good days and bad days, and she just seemed to be a little off. I attributed it to just the irregularity of a summer schedule, and a week that was particularly heavy on doctor's and dentist appointments for several of the kids. Lots of time running around, doing things that aren't necessarily fun. I also, of course, felt some mama guilt over the amount of time I seem to spend lately making phone calls, answering e-mails, scanning documents, etc. for the wide array of things we have going on (see previous post...)

One of those medical appointments happened to be some booster shots that Lilly was due to receive. Those happened on Tuesday. Tuesday night, Lilly had low grade fevers. We figured it was the MMRV vaccine, gave her tylenol, moved on.

Wednesday, we did some fun things--library, Niceville splash park--in addition to the running around, and she was mostly ok. No more low grade fevers, just a little clingier than usual.

Thursday, we went to her usual Thursday morning OT appointment on the other side of town. She was acting much more clingy than usual, and was quite noncompliant during our session, which was cut short because we had to go straight to her dental appointment. Lilly's anxiety at the dentist (where one might think they were pulling her teeth out one by one without novacaine should one hear her wails from the waiting room) is almost equal to her anxiety about needles. While at the dentist, I noticed that one of her surgical incision sites (still under steri strips) was looking a little funky.

Friday was a pretty fun day to play with friends and have a family date night at the beach (it was Daddy's pick). By late Friday afternoon, it was clear she was coming down with something, choosing to simply sit in my lap at the beach and at dinner, rather than playing in the sand or playing in the fountains as Destin Commons with Jared and Anna.

That night is when the high fevers began. Friday night--103.8. Yikes.

Saturday Anna had a swim meet at which I was signed up as a timer. Tom stayed behind, got Jared to drop off for a week at Boy Scout Camp in Tennessee, and nursed Lilly through the day of fevers up and down. We figured surely the fevers would be over later that evening. Not so. continued high fevers through the night...102-103-ish. Even as high as 104 at one point.

Sunday, ANna and I were back to the meet, Tom again playing nurse to our feverish one. He had decided if her fevers continued to spike so high, he would take her to be seen at the ER. We were starting to be concerned it wasn't just immunizations, and it wasn't just something viral since there were no other symptoms of viral illness and the fevers were just so high and lasting over the course of so many days. Knowing on of the possible complications of the VEPTR is post op infection, Tom decided to wait no longer and take her in.

And so began our time warp week.

She was a very sick little girl. Initial blood work showed a white call count more than 3x the normal level. The ER folks immediately got a pediatrician and orthopedic surgeon involved in her case, arranged transport by ambulance to the local off-base hospital for MRI. So, as Anna and I were leaving the meet after our second long hot day in the sun swimming (Anna) and timing swimmers (me), Tom texted me to tell me he was with Lilly in the ER, awaiting an MRI to get a look at her hardware to make sure there were no visible pockets of infection around the rods--a possible complication of her surgeries.

Anna and I met them just in time for me to sit with her and hold her ankle (her hand was too far up into the tube for me to reach) for a 1 hour and 45 minute MRI session--her first ever without sedation. She did really well. I was stinky from sweating in the sun all day, and was freezing in my light weight clothes that had served me well in the hot summer Florida sun.

Sitting there by her side for that long stretch gave me the first of what would be many opportunities to pray fervently for my child and to reflect on God's character, as I envisioned possible emergency air ambulance transport to Philly and yet another major surgery on her tiny body.

Making what could be a really long story much shorter, here is a snapshot of the week from there:

Sunday: MRI at Fort Walton Beach medical center, admitted by midnight to Eglin AFB hospital for IV antibiotics. Her white blood cell counts were up to 30,000. Yikes.

Monday: more blood work to look at white coounts and other markers for infection; consultation with Dr. Brothers, Eglin's orthopedic surgeon, who also consulted with Dr. Campbell at CHOP. They agreed that Dr. Brothers should go ahead and--with sedation--clean out Lilly's incisions, re-dress them, and culture them to check for infection. Results: basic staph, which is pretty much everywhere on our skin and not a cause for enormous concern. No sign of anything deep in the tissue; incisions healing nicely.

Tuesday: more blood work. Lilly is a tough needle stick--tiny little veins, big huge loud lungs. Not a pleasant experience for anyone involved (especially at 5am), least of all Lilly. Anyone in military uniform or scrubs was quickly becoming "the enemy" and I feared I would soon be considered "one of them" because of my role as the one who had to hold her down and convince her that everything they were doing to her was for her good.

They decided to tag some of her white blood cells with radioactive isotopes which, when re-injected into her bloodstream, might give them some clues as to where the source of the infection might be. Because we knew she had much blood work in her near future, they decided to insert a PICC line, allowing them vascular access without continued fishing for veins with sharp needles. Nothing by mouth was ordered starting Tuesday night. The PICC line would be inserted tomorrow at Fort Walton Beach.

Wednesday: Ambulance transport arranged, yet again, to FWB Hospital, then a long wait in their facility as they determined whether they had the right equipment in the right sizes to insert a PICC line. A long day of fasting for both of us. Finally determined they could proceed; I again felt like such the bad guy as Lilly angrily fought the administration of the versed (meant to make her calm and a little loopy--in reality it only lowered her decibels a few notches as she screamed "No! I'm not brave yet! I'm not brave yet! Don't let them mama, I'm not brave yet!" :( ) My heart was breaking for her. Sedation--by injection into her leg--followed, and--at my insistence--I stayed in the room for the procedure. Painful to watch, it took easily 4 times longer than they thought it would. Lilly's sedatives were beginning to wear off by the end, and she looked at me with pleading eyes that said "get me out of this place." We thought the worst was now over and no more needle sticks would greatly reduce Lilly's trauma in this ordeal.

We weren't done yet.

Thursday: One of Lilly's surgical incision sites looked MUCH worse this morning. Dr. Brothers cultured it superficially, and scheduled her for OR time later in the day to For the second day in a row, NPO (nothing by mouth) was ordered so they could sedate her later in the day to actually open up a few of her incisions and probe more deeply around her hardware for any deeper pockets of infection. This was the day they had also planned to re-inject her white cells (drawn successfully through the PICC line early that morning) into her bloodstream. The problem: by the time the white cells were back from Pensacola where they had been "tagged," the PICC line had clotted off. It was no longer a viable vascular access point to administer meds or to re-inject the white blood cells. The OR time that had originally been planned to simply open incisions now also turned into a race against the clock (so the blood cells wouldn't expire) to get 2 IVs inserted, white cells injected, next dose of antibiotics administered.

Friday: finally a day without anything too scary. Simply watching the make sure fevers didn't return and continuing on IV antibiotics.

Saturday: cultures from Thursdays' procedure came back showing simple Staph infection, showing sensitivity to a wide array of antibiotics. Plan made for discharge Sunday (that would be today). Lillly awakened this morning saying "Today is an esasy day" and knowing that she would soon go home too gher "comfy bed." By noon, we were receiving dis hare instruction9s and receiving her oral antibiotic to cointinue at home for the next 4 weeks. \

It was a wonderful birthday -resent foor Anna to have her sister home--and it felt jhust SO good to be in our house (even with it as messy as it is) and be in my kitchen and simply be all together (Jared made it back from Scout camp too)...

But we weren't done yet.

Roughly 6 hours later, we were on our way back to the hospital. This afternoon, Lilly started acting like she didn't feel good and she wanted to just chill out in front of the TV. I gave her her next dose of antibiotics and took her temp. I can almost kick myself for doing that. 101.4. Didn't want to believe the thermometer was right, so I took my own temp. 98.6. Tom didn't want to believe it either so he tried a different thermometer. 101.8, his own temp with the second thermometer was 98.4.

I took the dog for a walk because I didn't want to think about what I knew was coming. Tom, meanwhile, called the doc who has been working with us at Eglin. When I got home and saw his face, I knew we were packing back up and headed back in. The birthday cake I had in the oven for Anna had 4 minutes left to bake. We let it finish, let it cool a bit while we packed back up (my clothes were all still dirty from last week...I scraped the bottom of the drawer to find something to wear tomorrow) packed up the lovely dinner that a friend of our friend Tiffani had prepared for us and headed back. I asked Tom if we couldn't just enjoy one night i our own beds, but knowing that the oral antibiotics were not keeping the infection at bay, he knew we couldn't afford to let her miss any more doses of the IV meeds.

Before we could enjoy Anna's birthday dinner together at the hospital, therefore, Lilly had to endure 3 more needle pokes in the attempts to draw blood for lab work and insert a new IV. Her poor arms are scabbed and bruised from all that she has been through. My heart is literally breaking for her.

At the same time, I know folks are praying, and God is graciously giving me His peace and His Holy Spirit to remind me of His presence. I know all things work together for our good and His glory, and am patiently awaiting His leading. Praying that He gets the glory in this situation, in our hearts, in our attitudes and in our love for others.


I am feeling blessed indeed, by visits from friends, meals prepared and delivered (even by some folks I don't even know.) Neighbors are helping with Tad and the yard work, and taking care of Anna and Jared.

Words cannot even begin to describe my emotions about all of this...another post will have to address those...