The waiting is the worst part. It's only 1:30 PM in the afternoon and we're already exhausted. Our big surgical day started at 4 AM. We woke after a sleepless night and try to rouse ourselves to get out the door. Bags ready, car packed and off we go into the wee small dark hours of the morning, arriving at NYU Medical Center at 6 AM. Text from Eden's school caregivers, they're on their way..almost. Another call. Where are we? We are in the lobby, they, however, are at the wrong hospital. Another 15 minutes and they're already at NYU's admitting office. We're off to a great start.
After a circuitous route through several maze-like corridors, we meet Eden and her aides, waiting patiently for us. Eden is an angel, listening to her MP3 player and watching Elmo on Sandie's phone. Within the hour, she's brought to the nurse's station, checked for vitals. We're introduced to the team who will be involved in the surgery -- nurses, anaesthesiologists, residents, and her doctor. The surgeon is focused, alert, and very upbeat. His visit is brief but helps reassure us. The members of her team confide they would go right to him were they in our situation. What better endorsement?
Everyone is very friendly, but asks the same litany of questions -- when did she last eat? What medications has she taken? Who's here today? Mom, Dad, and two dedicated caregivers from the Center. We're grateful for their presence, helping to manage Eden on a gurney, to help get her gown on, and even assist the nurse with administering her sedative. At this point, they know her better than we do, and can certainly manage her better. With Eden reasonably sedate, we answer important questions while trying to quell frayed nerves and tightened stomachs.
Eventually, Eden calms down enough to head out to the O.R. Sandie suits up in her "bunny suit" to accompany her in. Eden's school aides prepare to leave and I hug them with the utmost gratitude. Friendly faces make the whole experience a bit more bearable. Sandie returns, a bit shaken, tears welling in her eyes. I had to bite my tongue while they wheeled Eden out of our admitting room, to fight back my own tears.
And so, the waiting began. Her surgeon told us the operation would take about six hours. The waiting area is comfortable enough, but we're too tense to even nap. Sandie's mom and Noah show up around noon and we go to lunch, trying to get some air and keep up our strength. Fortunately, a very friendly nurse provides us with regular updates on the progress of the operation. It looks like we'll be here until 3 PM, when she finally gets out of surgery. Then, the real fun begins...
A lot has happened since my first entry at the hospital. Eden's surgery took 6.5 hours but ultimately was completely successful. Her surgeon came out to greet us, and showed us an x-ray that revealed her spinal curvature was 100% corrected. It was truly amazing seeing the curvature corrected by rods attached to her spinal column. After speaking with the surgeon, we raced up to the Pedicatric ICU to see Eden in recovery. Post-surgical recovery is always a little scary, with all the IVs and tubes that are plugged everywhere, but we were assured she was resting comfortably as she appeared to be. Even asleep, her neck and head seemed much straighter and well-aligned than they ever had been before.
Eden stayed in the ICU until Saturday afternoon, with my wife sleeping at her bedside overnight. I came by early Saturday morning to visit and take over the bedside care, urging her out with my son and mother-in-law. Sandie looked exhausted, since sleeping in an ICU (without sedation) is almost impossible. Noah was eager to see "The Hunger Games", so they took him to the movies while I waited for updates from the myriad of doctors. One after another, I met with orthopaedists, pediatricians, nurses, physical therapists, etc., all there to look over my little girl to make sure she was on the road to recovery. There were no post-op complications and she was fortunately not in much pain. Since she was stabilized, the doctors decided to release her to the pediatric floor later Saturday afternoon.
In the evening, after they'd had a chance to go back to the Ronald McDonald House to rest (more on that later), everyone came back to check on Eden. She was resting comfortably and without all the various Borg-like medical equipment stuck into her. Going into the surgery, I think we were most afraid of how she would manage in the hospital bed. Gratefully, though, she seemed to be ignoring her IV lines and not trying to remove them. With Elmo on TV and her MP3 player, she seems to be content to rest and let Mom and Dad dote on her.
I spent Saturday night at Eden's bedside, wanting to give my wife a chance to sleep. I get maybe three hours myself, being woken nearly every hour for the pokes and prods the nursing staff save for the early morning. I don't remember being this tired since Eden was first born. At 6 AM, I awake with a start as the nurse moves to draw her blood. Eden doesn't flinch but I feel suddenly faint and need to excuse myself after it's over. I can't pass out myself when it's Eden who's had the surgery! I chalk it up to exhaustion and general aversion to blood.
Eventually Sandie comes to my rescue and we spend the day with various visitors, including one of Eden's fondest aides from school. She helps when the physical therapist gets Eden off the bed and walking, which she does very well. She definitely seems taller!
The rest of the day progresses quietly. We've found more Elmo videos for Eden to watch which keeps her happy. She's eating solid foods well so her appetite seems back to normal, though a bit slow. We're just so happy Eden is staying in bed and being cooperative. It's making the hospital stay much more manageable. Sandie stays at Eden's bedside tonight while I head back to Mickey D's House to rest so I can take over tomorrow. The place is truly a Godsend. I hope tomorrow is as good as today!
Saturday, March 10, 2012
I’ve let this blog lie fallow for a while, far too long, in fact. This week, I’ve felt compelled to take it up again, anticipating another potentially life changing event for our daughter Eden. In about two weeks, Eden will be undergoing spinal surgery to correct a rather severe spine curvature resulting from her advanced scoliosis. At this point, she’s at a 50% curvature, which means she leans noticeably to the left and drags one of her legs. Her doctors say that it seems to be progressing and that by 18 years old, she might have a 100% curvature, impacting her mobility and overall physiology. So, my wife and I resolved to have the condition corrected this year. We’re told that her age is a positive factor for recovery, and that younger children heal easier. If we wait, the condition would be much harder to correct.
Deciding to have Eden undergo surgery was a tough one. She’s only been hospitalized once before, when she had a grand mal seizure at 8-years old. Thank God she was treated successfully then and we’ve not had a recurrence. Still, maintaining her in the hospital for those few days was an ordeal. Whenever she regained consciousness, Eden would immediately try to pull out her IVs and throw herself off the bed. Sandie and I took turns wrestling our little 8 year-old, who obviously didn’t understand what was going on and was probably pretty scared. She was sedated most of her stay, and released early because the hospital couldn’t maintain her. Eden was still affected by the medication when she got home and couldn’t even stand up (she unceremoniously and unexpectedly plopped over once in the living room! At least we had the foresight to have her sitting on an exercise mat).
With the upcoming surgery, we’re going into it with great hope that it will make a significant improvement in Eden’s quality of life. We’re also told that she’ll grow two inches once she’s all “straightened out”, and there’s the promise that her mobility will improve so we won’t need to worry about this again. Our surgeon has performed this procedure on numerous disabled children with excellent results. Plus, the staff at her school, the Center for Discovery in Monticello, NY, has a lot of experience caring for post-operative children. Frankly, they’re in a far better position to care for Eden after surgery than we would be at home.
Still, with the hope comes more than a little trepidation. Spinal surgery isn’t trivial, though our surgeon is a leader in his field. I think we’re most concerned about the post-operative period when Eden is recovering. If past experience is any guide, she’ll fight all the intrusive IVs and restrictive hospital environment. We’re hoping she can be given medication that will minimize her agitation and ease her recovery. Sandie and I are anticipating holding alternating shifts at her bedside for the week while she’s recovering. I can only hope we can arrange for an aide to help out.
Eden’s school staff is very much on top of the ball and has a plan for when she returns. We were worried that her penchant for dropping to the floor might injure her post-operative incisions or sutures. The surgeon tells us that Eden won’t be able to damage the hardware he’ll be bolting to her spine, but our little girl is strong and determined. Let’s hope her indomitable will doesn’t lead her to injure herself.
And so, we wait… the surgery is scheduled for later in March. Until then, we’ve been attending pre-operative doctor's visits, for blood work, MRIs, x-rays, and the like. Eden’s been cooperative with each of these appointments, which bodes well, we think. We’re trying valiantly not to try to over-anticipate problems and approach the surgery with a positive attitude. At this point, it’s the only thing we can do. Watch this space for further updates as our surgical adventure continues…
Posted by Reflections of a Special Needs Dad at 9:56 AM