Happy New Year! Email Update Sent January 5, 2007:
Our family had a wonderful holiday season this year. In stark contrast to last year, Elizabeth was virtually puke-free and was thrilled to be at the center of much of our family activity. I think we'll need to remind her sooner or later that it's Jesus birthday and not hers that we're celebrating...but for now, she is basking in all the extra attention from visiting family. For the first time since we were married, we did not travel away from the Bay Area for any part of the weeks surrounding Christmas! My parents graciously offered to drive over to celebrate with us before Christmas, and then the rest of the weekend & week was spent with Matt's parents and ALL of Matt's siblings including the newest almost-addition, Julia's fiancé Ralf!
Elizabeth is doing really well. At times like these, it's easy for an optimist like myself to forget about the baggage of the health issues and potential surgeries and focus on the journey of being Elizabeth's mom. She's up to 9.8 kg (21.4lbs) and is spending a lot of time on her feet. She still can't get herself into a sitting position by herself, but she can pull herself up to a stand if she's sitting on a low stool, and that's huge progress. We're pretty sure she'll skip crawling altogether and just walk (eventually). Her latest round of labs and ultrasounds show that she's really stable, and might even be developing collateral blood flow around her portal vein clot. We'll recheck it later this month, but regardless, she's doing really well.
The biggest daily prayer request remains her feeding. Specifically, Matt and I (mostly me these days) need wisdom to know how to best proceed in helping Elizabeth learn to eat and grace for the slow progress. A few weeks ago, our feeding therapist said it's really rare to see kids weaned from their g-tubes between 1 & 2 years old...Will you join us in praying for a miracle- That we'd be able to wean Elizabeth in 2007? We believe with God's help it's possible!
We hope you had a wonderful Christmas and New year's...we are so grateful to have made so much progress since last year…
Sara (for all of us)
Sent January 17, 2007:
"Yes She IS..."
An answer to prayer. Oh Joy of joys. Bring on the food pyramid!
Sent January 31, 2007 (AM):
Dear Friends and Family,
Sara and I are writing to ask again for your concerted prayer for Elizabeth- she's back in the hospital. On Sunday, after a week of diarrhea and increasing fusiness, she started having high fevers with blue lips, hands and feet. Sara had her at the Coast (taking a little get-away time) with friends and made an early morning drive back with her. We "google-mapped" all the hospitals along her route just in case! We took her to the Pediatrician's, where she appeared dehydrated. They drew some labs and cultures and gave her some intravenous fluids. Her urine profile suggested a bacterial urinary tract infection, so some antibiotics were given before we took her home.
Overnight, she didn't seem to be getting better, and now we know why: her blood culture is growing bacteria, meaning that they've escaped into her blood stream. They called us very early on Tuesday morning and had us bring her to be admitted.
We are obviously very disappointed to be back in the hospital, and very sad to see Elizabeth looking so miserable. Her high fevers and the bacteria in her blood have clouded her thinking a bit...she is currently shunning her favorite stuffed lion and in its place is hugging/cuddling with the room's telephone receiver! All the IV fluids they've had to give have gone straight into her abdomen...it's getting swollen again and has us concerned. Her spleen has also gotten much larger and the explanation for that is not yet known. More testing will happen today.
There are a couple of "silver linings" that we're thankful for. The pediatrician's initial diagnosis was a viral infection. They almost didn't send the cultures that led to her accurate diagnosis. We are grateful that my medical training gave me the insight and confidence to question the viral diagnosis and push them to look for other possibilities. Additionally, Elizabeth's diarrhea could be infectious...so to keep others from getting infectious, they had to give us a private room with plenty of quiet for Elizabeth to catch up on sleep.
To help focus your prayers, here are a few of things that are weighing on Sara and me:
1. Pray that Elizabeth would respond quickly to the antibiotics.
2. We're tired of "new problems" popping up on unexpectedly. Pray that God would get it all "out on the table " and let the doctors uncover everything that's wrong so that things can be addressed.
3. It's normal for kids to get frequent viruses. It's not normal for kids to get so may violent bacterial infections. Pray that the doctors would find out why she's so susceptible.
4. In the past, the abdominal fluid has impaired her breathing. Pray that the reaccumulated fluid would disappear quickly and not get any larger.
5. Sara will be carrying most of the in-hospital caring. Pray that she'll have the stamina and strength for this time and energy consuming task.
6. On Thursday, I switch to a VERY time intensive job/rotation. It's at the UCSF hospital, 2 floors above where Elizabeth is staying. Pray that the work-load will be light enough to allow me to participate in Elizabeth's care and see my wife on occasion.
We'll try to keep you updated, and promise a quick email if anything really good (or the opposite) happens. If you don't hear from us in the next day or so, it's because she's getting slowly better. Hopefully that will keep you from worrying about email silence.
Matt on behalf of Sara and Elizabeth
Sent January 31, 2007 (PM):
A quick update on Elizabeth:
We had a really rough night. Her IV stopped working midway through a dose of antibiotics at 1:00am, so that required some investigation, which woke her up and she was really stressed about it. (no surprise) When it was determined that the IV had failed, they made two attempts to get an IV in, but were unsuccessful. This also meant waking her up, and causing her lots of stress in the middle of the night. She finally had to get a shot to deliver the antibiotics she needed to treat her blood infection, and by 4:30, we were both able to sleep again. Not our best night. Overall, she's much more stressed about being here. She's leery of the doctors, afraid of anyone who touches her feet and hands, and even her favorite "silly songs" video doesn't seem to distract her as well as it used to.
There are immediate answers to prayer though:
-I'm hanging in there, and haven't caught the roto virus which is causing all the GI symptoms.
-They've identified the "bug" in her blood as ecoli, and that means it's most likely a migration from her UTI (called "urosepsis") The fact that these two bugs are the same, means we only need one antibiotic and since it's "pan-sensitive" (it responds to all antibiotics) we can use a lower strength antibiotic. That also increases the chances of us going home sooner than later.
-Our spectacular GI team is "on-service" this week, so Elizabeth is being taken care of by people who know her well and tirelessly advocate for her. They're working to get us home for the Superbowl...
-Matt's got Ej's bug, so he's feeling horrible and really can't afford to miss work or be sick for that matter.
-For Ej's well-being, and a peaceful mind, for sweet dreams, a sense of security and comfort and that I would know what she needs and how to provide it at any and all hours of the day and night.
Okay, gotta get back. Thanks for your prayers. Between them, and a little caffeine, I'm getting through the day!
PS: I just ran into Matt in the hallway (a perk of being in his place of employment!) and he informed me that he does NOT have Elizabeth's bug, but rather her virus...roto to be exact. He still feels horrible, but does NOT have bacteria in his blood which would require IV antibiotics. Whew.
Just trying to keep all this straight.