Pre-Op Day Went Well!

It has been a long 24 hours!

Pop Pop arrived last night around 8:30pm and had to hit the ground running...I had typed up the week's schedule of kids' activities, given him lists of names and phone numbers and carpool information, had entered many locations on my car's GPS for him, left lists of meals I had left in the freezer, and gave him the quickest possible briefing on what the week would hold for him and my big kids.  Not the normal reception I give to beloved family members who come to visit; I had to preface everything when he first came through the front door with "welcome to my world!"  I should have added "...hang on tight!"  Speaking to him throughout today, he is doing fine.  The worst thing so far is that he can't get our TV to work--but that's part of my world, too.  The big kids are faring just fine--even though I miss them terribly--and I am so thankful to know they are in good hands.  A stretching experience for all of us, for sure.  Thanks Pop Pop!

Once we had given the rapid fire list of instructions to Pop Pop, we loaded Tom's truck and hit the road around 9:30pm.  We made it about 2 1/2 hours and finally stopped to sleep.  Lilly, thankfully, fell asleep before we even were out of Niceville, and slept the whole drive.  Up early, we were back on the road to Birmingham by 7am.

Our day at Children's Hospital began in the radiology department, where (in order to avoid general anesthesia two days in a row) Lilly was to undergo a CT scan WITHOUT sedation or anesthesia--a change in plans made yesterday, when we were still under the impression that they were going to put her under in order to guarantee a successful CT image.  Lilly rose beautifully to the occasion--what a trooper.  She managed to successfully hold still and hold back her tears and fears for the CT scan.  On a roll, she then--for the first time EVER--managed to undergo a battery of lying- and standing-x-rays without a single whipmer or tear.  Amazing how far she has come, and what a great God we serve--I know he is hearing the prayers of so many of you! 

Following radiology, we were back to neurosurgery to talk to Dr. Oakes about what he saw on her 3D CT reconstruction of her spine and what his plans are for the surgery tomorrow.  Here is my non-medical take on what said: he sees no bony or cartilege structures forming any kind of a "septum" between the halves of her split spinal cord, which is a good thing.  He suspects there may be some "meningocele manque," or "false nerves," which don't show up on MRI and are basically fibrous membranes that could be acting to restrict the movement of the spinal cord.  He plans to look for those by inserting a very very tiny scope through her sacrum and look as far up as her T10 vertebrae.  If he sees them, he will remove them, and will work his way up as far as he can with the scope to ensure he removes all of them.  He does not feel that he can look any farther up her spinal canal than that with the scope, and does not feel the risk of actually cutting her farther up and opening up her spinal column is worth the risks.  He readily admits there are many unknowns and he (and we) will have to take things as they come tomorrow.  He could be done in as little as an hour, but it could also take many more hours, depending on what he finds with the scope. We are praying for the best. 

With no rooms available at the Ronald McDonald house, we are "roughing it" at the nearby Hyatt place, which could also act as a recovery room for Lilly if things are easy tomorrow.  She will spend tomorrow night in the pediatric intensive care unit (where we are not permitted to stay overnight...my mama brain cannot get wrapped around that one yet), and then from there either get moved to a regular hospital room for 3 more days, or perhaps get discharged to lay flat in our hotel room for 3 more days to prevent any spinal fluid leaking. 

So, we had a lovely dinner at a place called "nothing but noodles" which Lilly loved, and are now bathed and getting settled in for the night after checking in with Pop Pop, Jared, and Anna. 

Early morning tomorrow--6:30am show time, with surgery likely to begin by 9am.  Thanks for your prayers for Lilly!  We have a wonderful support team.  Thanks for the many facebook messages and e-mails from many of you. 

Stay tuned on facebook for brief updates, and more details here as time allows.  Night night, all.

Our God who Heals--Jehovah Rapha

Just a quick note as I have packing and laundry to get back to.  I just had to take a minute, however, and post something Lilly said tonight, totally unprompted, that made me smile and made my heart happy:

She has a little hangnail on her index finger, and has been complaining about it for 2 days.  Tonight at dinner she was whimpering about it and asked for a bandaid.  Daddy got her a nice bandaid and wrapped it right up.  All was well.  Later in the evening, after using the restroom and washing her hands, the bandaid was wet and began to fall off.  She decided to remove it.  When she saw that the hangnail was already better, she said (using Chinglish which she hardly ever does anymore!) "Xie Xie, God!"

Praise God that she is learning that healing is of the Lord.  May she continue to grow in the knowledge of that truth and grow in her trust of our amazing God in the days and months ahead.

Getting Geared Up

We are getting ready for a big week next week.

Lilly is scheduled for a CT with general anaesthesia on Tuesday the 21st, and her first surgery is scheduled for Wednesday the 22nd, at Children's Hospital of Alabama, in Birmingham.  We are so thankful that things are falling into place to have her spinal cord issues addressed in preparation for her VEPTR surgery to follow at CHOP.  We are thankful for the expertise of pediatric neurosurgeon Dr. Oakes, and the friendliness and professionalism of his staff.  We are hopeful that we will be able to stay at the Birmingham Ronald McDonald House--though one of us can stay with Lilly at all times in her hospital room.

We are thankful that Tom's dad will be flying in from New Jersey to stay with Jared and Anna so they can stay in their own home and not miss any school while we're away.  He knows how to cook pasta, so they will be happy!  We have wonderful friends and neighbors who are ready and poised to jump in and help, carpool moms lined up, etc. 

Lilly is anxious.  In addition to dealing with some transitions to a longer school day and a 3-day/week program with some changes in the children and teachers, she is clearly growing more anxious as we get ready for next week.  We have talked to her in basic terms about the surgery ("Dr. Oakes will be helping to get your back ready for Dr. Campbell to make your back turn from as "S" into an "I") but try not to dwell on it and I am trying hard to keep life as normal as possible this week.  But she hears us talking to others (when we think she's not listening) and she knows it's coming.  She is becoming clingy and insecure, and is demanding my presence more and more frequently at bedtime and through the night, something she really hasn't needed for months.  I don't like feeling like we are backsliding, but am trying to be sympathetic to her insecurities and balance her need for my presence with her need to understand that we will ALWAYS be here and will NEVER leave her, even if we are not in the very same room at every moment.  As much as I would frequently second-guess my mothering when Jared and Anna were this age, SO much more do I find myself questioning what is best for Lilly.  Praying on a daily, moment-by-moment basis for wisdom because I have desperate need for it.

What to expect next week:

• Monday afternoon, 20 September: Tom's dad (Pop Pop) arrives!  Yay!
• Late Monday night or very early Tuesday: Drive to  Birmingham
• Tuesday, 21 September: 9am appointment with Dr. Oakes.  Noon CT scan with general anaesthesia.
• Wednesday, 22 September: spinal cord surgery to address Lilly's split spinal cord--diastematomyelia--to remove the bony or cartilege septum that separates the two halves, possibly remove fatty filum and un-tether the cord if CT scan indicates it is necessary. 
• Wednesday-Sunday or Monday?: Lilly will recover flat on her back for 3-4 days, greatly restricted in her movement.  I'm told she will not be sedated and will be in a regular room, but we're wondering if it might require ICU for at least the first day or two, with sedation...
• Monday the 27th:  Tentatively scheduled for one-week followup with Dr. Oakes.  Hoping she will be discharged this day so we can head home and be there when Pop Pop needs to fly home.
• Tuesday, 28 September: Pop Pop flies home.

Please stay tuned as I will post updates here as I'm able.  Thanks in advance for your prayers on Lilly's behalf!

Whew, What a Day!

Lilly and I made it safely to and from Birmingham yesterday for her renal sonogram and urodynamics tests.  The drive each way went smoothly (found a new, faster, more open way up to Birmingham in the morning, but my GPS diverted me a to slower route on the way home...grrrr.)  After a 5am departure from Niecville, we arrived at Children's in plenty of time for her first appointment.  They actually got us right in on time for her renal sonogram (she cried but mostly cooperated) and it took all of 5 minutes to complete.  Then we went back downstairs to let them know we were done with that and owuld come back at 2pm as instructed for the second test.  Rather than leaving the hospital for a lengthy lunch break, however, they got us right into the urodynamics room, sliding us into a slot for someone who had failed to show up as scheduled for their appointment.  What a blessing!  We were completely done with both of Lilly's tests about 90 minutes before we were supposed to even start the second test!  We had just enough time waiting for the urologist to arrive to practice a urodymics test on her baby doll, which I think helped to alleviate her fears somewhat.  It was not a pleasant procudure for Lilly--who would like to have a catheter artificially filling the bladder and then be expected to empty your bladder while lying on a hospital table?  But she was a real trooper and, with minimal crying--mostly whimpering--she cooperated, held still, and the test was over fairly quickly.  Praise God, everything looks completely normal!


So, rather than spending the night and driving home THursday, we pressed on home in time for Lilly to go to Cubbies.  She took a nice long nap on the drive home.

We saw some behavior regression last night, however, at bedtime.  These days, normally she is happy as can be when we tuck her in, kiss her goodnight, and retire to our own bedroom.  Last night, however, she cried hard when I put her to bed, saying she "didn't want to sleep alone" and, even while I laid next to her in her bedroom, continued to whimper for quite awhile.  I think the long day, early morning, and traumatic medical procedures took their toll on my sweet girl.  I know as we look ahead at surgery in a few weeks, the stress of it all is likely to push her in this direction so extra patience and wisdom are needed.  Thankfully last night, once she was asleep, she slept soundly through the night.

So, 3 weeks from now, she will face her first surgery.  We are confirmed for a CT with sedation and pre op on the 21st, and spinal cord surgery scheduled on the 22nd.  Stay tuned, and thanks for reading and praying.

Followup Tests in Birmingham Scheduled, Surgery on the Horizon

The ball is rolling indeed.

Lilly and I will be making our way back to Birmingham on Wednesday, 1 September, for her urodynamics test (the International Relations specialist in me has a hard time not spelling that word "euro" dynamics) and a renal ultrasound.  We will make it an early morning Wednesday to arrive in time for an 11:00am check in, and I am trying to decide if we will spend the night or attempt to drive back home the same day following her afternoon tests that should wrap up around 4:00pm or so...  Tom will stay here with Jared and Anna this time to keep it simple, especially since this visit will not involve any significant consultations with physicians--mainly just the tests.

The followup CT scan (with sedation, praise God), further x-rays, and pre-op appointments are tentatively scheduled for 21 September.  Her spinal cord surgery is tentatively scheduled for Wednesday, 22 September. 

Please pray for wisdom for the doctors as they review her tests, peace and comfort for Lilly, strength and wisdom and patience for Tom and me, and patience and comfort for Jared and Lilly as they deal with various "arrangements" for their care. 

Thanks for reading and especially for praying!

~Amy

A Few Interesting Links--Recognizing Dr. Campbell's Contribution to Saving Children's Lives

Video of Recognition by US Congress for Dr. Campbell

House Resolution Recognizing Dr. Campbell

Home from Birmingham: Spinal Cord Split Confirmed, Next Steps Outlined

We are home from our quick overnight and successful morning consult with Dr. Oakes, a pediatric neurosurgeon at Children's Hospital of Alabama who is well-known and respected in the field.  Many mant thanks to good friends and neighbors who cared for Jared, Anna, and Tad overnight!

First off, Lilly did great.  The car ride both directions (about 5 hours each way) was a piece of cake (thanks, in part, to the 2.5 hours I spent earlier in the day configuring her new "Leapster Explorerer" handheld game so she could play it).  She showed very little of her usual anxieties at the hospital, and even gave a few of the staff small smiles and waves, especially after a trip to the treasure box.  She was even willing to show off her ability to run for Dr. Oakes, as part of his exam.  What a difference from just about a year ago, when the one-hour car ride to her first ortho appointment seemed an eternity because of her wailing, and the entire time spent in the office she clung to me and cried inconsolably.  When we arrived home today, she announced within minutes of walking in the door "I didn't cry!"  That is a first for any type of doctor's visit for her. 

Second, we were really impressed with Children's of Alabama--they were friendly, efficient, and Dr. Oakes was great at explaining what he saw in Lilly, what the research shows in cases like her, and what next steps should be for her in preparation for her VEPTR surgery. 

Having reviewed Lilly's MRI and CT scans from CHOP, he explained that Lilly's spinal cord splits in two in the upper part of her spine, and then re-attaches to itself lower in her spine.  It is held down and "tethered" at its lower end by either bone or cartilege, which means that as she moves around, it can be stretched and pulled.  For now, this is not inhibiting her in any way that is noticable.  Left untreated, however, studies show that by the age of 15 she would almost certainly lose function of her legs and control of her bladder.  Moreover, if we were to proceed with her VEPTR surgery without first addressing this problem (something Dr. Campbell would not do), it would result in unspeakable damage to her spinal cord. 

The good news is that he is confident he can treat her surgically and prepare her for her upcoming "BIG" surgery on her spine.  He pointed out the irony of considering a spinal cord surgery to be the "little" surgery, but in Lilly's case, that's what is is by comparison.  This initial surgery will require probably 3-5 days in the hospital, and he expects we can get it scheduled in the next few months.

Next steps in preparation for the spinal cord surgery include additional X-ray and CT scans to look specifically and in greater detail at certain parts of her spine and a urinary neurological function test, to see how well Lilly's urinary system is innervated and how the surgery on her cord might impact her bladder control.  Neither of those things will be fun for Lilly--she has already informed me that that she WILL cry when they take more x-rays.  But she is a trooper and I know she'll be fine. 

We will work with Dr. Oakes' staff on scheduling these, hopefully in the next few weeks, and then get the surgery scheduled from there. 

Thanks for your prayers for our sweet spunky girl, for safe travels, and for Dr. Oakes.