Monday, June 12, 2006

One Month Later

It's been a little over a month since our daughter came home from the hospital, and in that time our lives have very much returned to normal. We've received many words of encouragement from the hundreds of family members and friends who have followed our daughter's progress via this blog, and we appreciate them tremendously. It seems appropriate to give a final update and record a few thoughts to complete this history of what has become a defining chapter in the life of our family.

Today our daughter had a follow-up visit with her neurologist. He performed a standard neurological assessment and found no impairment. He was curious about the precise findings from our visit to Stanford last month and asked that we have a report sent to him. We learned that one of the genetic tests on our daughter's blood is still outstanding at a specialized university lab in another state, and the neurologist promised to follow up with us once he has received the final result. This test seems like more of a formality than anything, as there is nothing in our daughter's condition that would indicate the presence of an underlying disease or genetic condition that could have led to her stroke.

The neurologist's clinic is located on the campus of the children's hospital, so after her appointment our daughter enjoyed lunch in the cafeteria. After all the time she has spent in the hospital she doesn't seem to mind going there as much as my wife and I do. In fact, she has said to us on several occasions during the past few weeks: "The hospital is much more fun than our house!" We're grateful that she doesn't seem to have any unpleasant memories or lingering fears of the hospital as a result of her stay.

As my wife and daughter were in line at the cafeteria they happened to run into the head pediatric resident who took care of our daughter during her first night in the PICU at the trauma hospital. She had taken a special interest in our daughter throughout her stay, and my wife and I appreciated the fact that she went above and beyond to keep us informed and keep our daughter comfortable. I was surprised to learn that the doctor remembered our daughter's name and so much detail about her case even after six weeks and countless other sick children. "What did those other two spots in her brain turn out to be?" she asked. My wife filled her in on the details of the diagnosis.

After lunch our daughter got to make a quick visit to the gym in the Rehab unit to visit her physical therapist, who along with the aforementioned head resident and another nurse from the trauma hospital are in our daughter's "hall of fame" as her favorite caregivers. I'm sure our daughter enjoyed showing her therapist all of the things she has been able to do over the past six weeks.

Her physical recovery is all but complete. She runs, she jumps, she swims better now than she did before her stroke. She walks on the balance beam in her gymnastics class. She rides her bike, although with the training wheels back on for now, but they will come off again soon enough. She can hop on her left foot, although with less confidence and fewer repetitions than on her right. She plays the piano with both hands and continues to learn new songs every week. She has learned to play a few simple songs on her new violin and is always eager to practice. She's enrolled in a ceramics class and recently finished painting a clay figurine of a mouse that my wife made for her. She's back on schedule with her studies and will finish her kindergarten math, phonics, reading, and writing this week.

Our daughter seems to be internalizing and coping with what has happened to her mentally and emotionally. She plays with her stethescope and other medical toys from time to time, usually practicing on her stuffed animals but occasionally on her friends. The other day she put her anesthesia mask on a friend and pretended to put him into an MRI machine (under a desk). She talks about her experience with just about anyone who will listen, including total strangers. While we were on our flight to Stanford last month I returned from the restroom to find her chatting with the woman sitting next to her about her stroke. The other day, my wife and daughter were in a Hallmark store when our daughter approached the clerk (a woman in her 60s), started up a conversation, and soon said:

"Do you know that I had a stroke?" our daughter asked matter-of-factly.

"Really?" the woman replied, a bit surprised. "So did I, about five years ago! I couldn't move my right side at all."

"Well I couldn't move my left side!" our daughter exclaimed excitedly.

They continued talking for a while. My wife reported that the experience was amazing to witness. There seemed to be an instant bond between these two based on their similar experiences, in spite of the 60 years that separated them age-wise.

Our daughter also has many, many, many questions about what happened to her. We try to answer them as best we can. If nothing else, this experience seems to have taught her that there is an answer to almost anything having to do with illness or injury of the human body. As if any four-year-old needed extra incentive to ask more questions! We welcome the chance to teach her about this experience and hope that in so doing we will help her to continue to cope with it.

Our two-year-old son isn't about to be left out of the excitement of all this new-found knowledge. A couple of weeks ago he announced to his nursery class at church that his sister "fell out of a swing and got a scratch on her brain and had a stroke." It was interesting to hear that sequence of events expressed in his own words, he seems to understand as much as anyone can expect of a child his age.

My wife and I, allegedly the mature adults of the bunch, are also still struggling somewhat to process what has happened to our family. Part of each of us seems eager to forget the experience and part seems determined to always remember it. Every few days I catch myself running through the instant replay of the first full day in the PICU when we first glimpsed the breadth and depth of what we were dealing with, and sometimes I still struggle to maintain my composure as I relive the experience in my mind. I'm not sure if it's from gratitude for our present blessings or from a fleeting memory of the pain we experienced in the past, but my own emotions about this experience are still a bit raw.

Given the choice between gratitude and all else, we choose to focus on gratitude. Our hearts are full of thanksgiving for our prayers and those of so many friends and family members having been heard and answered. We're extraordinarily grateful for what we've experienced as a family, we can see how it has drawn us closer together and helped us to appreciate each other more. It may seem easy for us to feel this way given such a good outcome, but we truly struggle to understand why we have been so blessed. We did nothing to merit this blessing, but it was given to us nonetheless. The mechanics of this situation cannot be rationalized. It is as futile to attempt to reconcile the good fortune of our daughter's recovery with some merit on our part as it is to attribute the misfortune of her accident to some misstep.

Instead, we trust that all things have been done in the wisdom of Him who knoweth all things. We rejoice, we give thanks, and we continue to pray for greater understanding so that we might appreciate these blessings even more.

Thursday, May 18, 2006


Silly CostumesThings are slowly starting to get back to a steady state around our house. After two weeks of chaos our two children are starting to get back into a regular routine that resembles our life before our daughter's accident, including an appropriate measure of silliness as is depicted in the image above.

On Wednesday our daughter had her initial outpatient physical and occupational therapy evaluation at a local clinic that specializes in neuro rehab. Her therapist, a renowned expert in this field, spent a considerable amount of time observing our daughter at play and testing her function with a number of exercises. Here is a summary of her findings and recommendations:

  • Our daughter was able to perform all of the exercises and tasks that the therapist instructed her to do.
  • Some of the exercises that measured strength showed that our daughter's left arm and leg are not as strong as her right. Her left shoulder seems to be the weakest of her major muscle groups. Some timed exercises showed that she cannot perform tasks as quickly with her left hand as she can with her right. There seemed to be a slight proprioceptive deficit in her left hand/arm when she was asked to close her eyes and touch her nose with her left index finger.
  • The therapist saw no need for our daughter to return for PT/OT twice per week as was ordered by her physician on discharge from inpatient rehab. Instead she instructed us to have our daughter start gymnastics (for strength and balance training) and continue with swimming (specifically emphasizing the practice of all strokes to exercise all muscle groups) and piano lessons and return for another evaluation in one month.
  • Our daughter is to wear a mitten on her right hand for one hour a day during playtime to help improve the strength and dexterity in her left hand. This is a form of "constraint-induced therapy" that forces the brain to use the weak extremity rather than devising work-arounds. More aggressive CIT -- such as putting the strong arm in a cast for a period of time -- does not seem to be warranted at present.
Piano lessons are continuing, our daughter seems to be no worse off than she would have been otherwise considering that she hasn't practiced in two weeks. Swimming lessons start tomorrow with the same teacher that our children had during the winter months, and we are interested to get her opinion as to where our daughter is today versus where she left off a month or so ago. Gymnastics start next week. We're happy to be able to have our daughter do activities that she already knows and loves as part of her therapy.

Tonight two of my wife's friends brought our daughter a 1/8-size student violin as a gift. My wife and I have both studied violin and still play our instruments from time to time, and our daughter has been pleading with us to teach her to play, so she was thrilled to receive this gift. She's learned enough music theory studying the piano that she should be able to transfer her knowledge to the violin after learning some technique, which should help her regain more left arm strength and left hand dexterity. What a thoughtful gift from two friends who really know our little girl!

My wife and I have noticed that our daughter's physical recovery has proceeded with greater speed than that of her emotional recovery following this ordeal. Her two weeks in the hospital amount to nearly 1% of her young life, and probably a significantly greater proportion of the part of her life that she still remembers. We wonder: If we ourselves are struggling to put this event into perspective, how much more must she be struggling given her youth and limited experience with life?

She had been acting out a bit more than usual earlier this week, which posed a unique challenge for us as parents. How do we reconcile the need for discipline in a young child with natural permissiveness that stems from our sense of awe at what our child has just overcome, to say nothing of the possibility that her behavior may be directly attributable to effects of her stroke in the first place? We understand that her entire world has been turned upside down, and the fine line between empathy and enabling bad behavior can be difficult for us to discern.

We are grateful that her behavior seems to be normalizing. In the meantime, we've had ample opportunity to discuss with our daughter the reasons why she sometimes becomes so upset. Her insights have been surprising at times. For example, in one fit of frustration she said "Dad, I'm just really upset that I had a stroke." Another day this week she tipped over while seated on the carpet and gently bumped her head on the floor. As she lay there she was practically trembling with fear as she asked "Am I going to have another stroke?!" Earlier tonight she asked me "Dad, why does Heavenly Father sometimes let us get sick?" Our daughter may possess spiritual maturity and intelligence beyond her years, and she may now be neurologicaly normal or close enough thereunto, but it's obvious to us that some work remains to be done on our part to help her comprehend and accept what has happened to her over the past two weeks and how good her outlook is. We're working to take advantage of every teaching opportunity that we have to help her understand to the best of her ability.

On Tuesday I returned to work after an absence of 11 days, the most time I have spent away since I have been employed. In contrast with other vacations, this time off was unique in that I found myself totally unable to think about what might be going on at the office. My email went unread, my voicemail unheard, and my cell phone unanswered. My colleagues have been tremendously capable in covering for me while I have been away for so long, and I owe them a debt of gratitude for allowing me to focus on the welfare of my daughter and family without worrying about what was happening at the office. I've very much appreciated the words of encouragement, faith, and support that I have received from many current and former team members, clients, and partners since I have been back in the office this week. It's an honor to be part of an organization where everyone cares so much about each other.

On another personal note, it's likely that my blogging activity will diminish significantly beginning next week. Our daughter is doing well, so we anticipate that there will not be as much news to report. In addition, I will begin a two-year graduate program at The Wharton School this Sunday, which will require that I divert my energy from the the past two weeks' informal study of neuroscience to a much more formal regimen of courses in finance, economics, accounting, and management. The staff at Wharton have been very understanding of our daughter's health situation and would have allowed my wife and me the option of deferring my admission until next year if necessary, but our daughter's recovery has been so swift and so complete thus far that I'll be able to start class as scheduled, and for that we feel very blessed.

I appreciate all of the positive feedback that we have received about this blog over the past few weeks. It's certainly served its purpose to keep our daughter's many friends and family members informed about her condition, and writing it has been quite therapeutic for me as well. I hope that it will remain a resource for other families who may experience this type of event in the future. May God bless their children with as good an outcome as that of our daughter, and that they and their families might live to transcend this difficult experience and come to be known as much more than an individual or a family defined by a tragic illness.

Tuesday, May 16, 2006

Back from Stanford

At the Stanford ClinicWe returned home from our trip to Stanford a couple of hours ago. Our flight was delayed by bad weather on the East coast this morning, but that was the only bad news of the day.

Our daughter and I took a flight early this morning to the Bay Area while my wife stayed at home with our son. We spent most of the day waiting in airports, on airplanes, and in the doctor's clinic, but the wait was worthwhile. Here are some of the high points of the visit:

  • Our daughter does not have Moyamoya disease. The doctor we consulted with today is perhaps the leading expert in Moyamoya and other cerebrovascular diseases in the United States and he gave her a clean bill of health. Specifically, he said that her MRA shows vessels that are so clean that there isn't even reason to do additional testing.
  • Aside from the obvious evidence of stroke in our daughter's most-recent MRI (one week old), there were no neurological findings in today's evaluation that would have indicated she had suffered a stroke. Her recovery has progressed to the extent that this expert could not detect any impariment at all.
  • The doctor concurred with the previous interpretation of the most-recent MRI that the feature of interest in the left internal capsule is an abnormally large perivascular space rather than an old ischemic lesion. This well-informed opinion strengthens the case that our daughter does not suffer from an underlying pathology that has caused multiple ischemic strokes in the past and would therefore predispose her to suffering another one in the future.
  • The doctor said that the trauma of our daughter's fall indeed could have caused her stroke through an arterial spasm or similar physiological result of the injury, but we cannot prove that to be the case. That conclusion becomes much more likely if we can exclude other pathologies, including blood and vascular disorders, and if she was neurologically normal in the time immediately prior to her accident. I should add that tests for blood disorders have been ongoing since three days after her stroke, and all of the tests have come back negative (normal) to date.
  • The doctor confirmed that, assuming that the trauma caused our daughter's stroke, she does not have an increased likelihood of suffering another one in the future.

It is impossible for me to express the gratitude we feel at receiving this news. It's everything we've hoped and prayed for during the past two weeks since we learned of our daughter's stroke and all of the terrible illnesses that could have caused this event.

We are due to begin outpatient physical and occupational therapy this week and follow up with our local pediatric neurologist within two weeks. While the clinical team at Stanford did not detect any impairment in our daughter in today's evaluation, my brief experience is that the therapists are much more thorough than physicians and nurses! We still notice a few little things that she struggles with, for example: She can't walk in flip-flops because her left foot and leg are not strong enough to grip the sandal with her toes. She has some anxiety about swimming without a float, presumably because she can still perceive some weakness persisting in her left side. And she's still very excited about riding her bike again once we receive the all-clear from her doctor.

Considering where she's been in the past two weeks, we're thrilled with how far she's come even if these few little remaining problems are never resolved. We feel as though we've been taken to the brink of something terrible, dangled over the edge for a few weeks to experience what it would be like, and then mercifully (and quickly) pulled back to the relative comfort and ease of our prior state.

But I can't say that we're comfortable or at ease any more. We're shell-shocked by what we've experienced. We can't quite seem to comprehend it yet. As much as our life may seem to have returned to normal from the outside looking in, it's different in ways that are difficult to describe yet very real to each of us. I hope the passage of time will lend clarity to this perspective that I'll be able to share in the future. In the meantime, we're striving to make gratitude our overriding sentiment.

Thursday, May 11, 2006

We're Home!

Our daughter's recovery has progressed enough for us to be discharged from inpatient rehab at the children's hospital. We returned home at about 5:00 PM on Wednesday. Her neurologist met with us that afternoon and indicated that upon further review, he and the neuroradiologist have agreed that the area of interest in her left brain is an abnormally large perivascular space rather than an old ischemic lesion. In other words, he now thinks her stroke is an isolated incident, albeit of unknown origin at this time, and that she likely does not have an underlying vascular disorder like MELAS or Moyamoya that would predispose her to future episodes. The MRI image above shows the feature that we now believe is the perivascular space, the light area inside the space is an artery that is highlighted by the MRI contrast material.

The neurologist said that the lesion in our daughter's right internal capsule is healing nicely. The following images are a series of 5mm coronal MRI slices showing how the lesion is resolving. I find it interesting that the most abnormal areas are now concentrated on the extreme upper and lower boundaries of the internal capsule, with the tissue in between appearing more normal:

Before we left the hospital yesterday we were privileged to see our daughter's roommate, going on 40 days in the hospital after suffering an acute viral illness that attacked her nerves and had left her completely paralyzed, take her first steps with the aid of a walker. It was thrilling for all to see, particularly for her parents and the caregivers who have worked tirelessly with her for many weeks. The two girls have become good friends over the past week and we hope to have a happy reunion with our families in a few more weeks once both girls are well enough. Our joy in leaving the hospital was tempered by the sadness of leaving our newfound friends and knowing that their difficult journey was not yet through. We continue to pray for this sweet little girl and her family that the remainder of her recovery will be quick and complete.

We're scheduled to start outpatient physical and occupational therapy next week. In the meantime, we have a notebook that explains some exercises our daughter can do to continue developing the strength in her arms and legs. This morning she announced that she was going to play a brief song on the piano that required the use of her left hand, and she did. We went swimming around mid-day and our daughter was thrilled that she could get around in the pool on her own. Her PT said that swimming will be excellent therapy because it will require the equal use of both arms and both legs.

We're due to follow up with the neurologist at the children's hospital in two weeks. In the meantime, we have arranged for a consult with an expert in pediatric cerebrovascular disease at the Stanford University School of Medicine early next week. We don't yet have a definitive answer as to why our daughter's stroke occurred, the possible reasons run the gamut from a freak accident to an insidious disease, and the consequences of a possible recurrence could be so devastating that it makes sense for us to consult with someone who is at the forefront of this area of medicine to make sure we're doing all we can for our daughter.

We've enjoyed spending the past 24 hours together as a family and trying to become re-acclimated to our "normal" life after a couple of weeks in a zombie state. We watched The Chronicles of Narnia together tonight, a gift to our daughter from a good family friend while she was in the hospital. Afterward my wife commented that she feels like we've just stumbled out of the wardrobe into our previous life after many years in Narnia. As a family we still look pretty much the same on the outside thanks to our daughter's miraculous recovery thus far, but there's no easy way to describe the breadth and depth of what we've just experienced and how it has changed us, individually and collectively.

Personally, I've told several people over the past week that I've come to appreciate the perspective that these events have lent to my life. I understand now better than I ever have before how wonderfully precious and fragile life is, and how the order that we strive to achieve in our lives can be illusory. Each of us is subject to a much greater power that can turn our world upside down in an instant. Some may call it luck, fate, chaos, nature, or karma. I believe it's the will of a loving God and Heavenly Father who is constantly trying to teach us, His children, how to become more like Him.

However you choose to explain it, you must concede that there is something much more powerful than you to which your very existence is subject. And that knowledge should inspire each of us to focus on the most important things in life while we have the power to do so, because in the end we have only limited control over where tomorrow will take us!

Tuesday, May 09, 2006

Diagnosis: Inconclusive

Monday was a trying day for our daughter. She was to undergo an MRI of her brain at a time in the afternoon that would be determined by other higher-priority cases before her. She was not allowed to eat solid food all day. The time of her appointment was pushed back several times. When the time finally arrived, she was put under general anesthesia so she would not move during the procedure, which lasted approximately 45 minutes. The short duration did not give her time to deal well with the anesthetic, and she was very upset when she awoke in the recovery room.

The nurses had left an IV in her arm for the tests that were to commence the following morning, and in her post-anesthesia delerium she tugged at it furiously in protest of the intrusion. After she regained consciousness, we explained that she could either leave the IV alone or have the nurses remove it and stick her again the following morning. She opted for the latter. When the needle was removed, it was obvious that her thrashing had bent it so much it wouldn't have functioned the next day anyway. Her appetite came back shortly before 9:00 PM and she enjoyed a dinner of quesadillas and a movie before bedtime.

When she awoke this morning, she had to continue without food or drink until 9:00 AM in order to undergo a fasting blood test. She did well under the circumstances, we had our regular morning routine and she even went to PT/OT before her sample was collected. True to her word the night before, she didn't protest the needle stick very much and the procedure went quickly. Afterward we had breakfast with a speech pathologist who confirmed what we already knew: that her speech, cognition, and feeding are unimpaired by this event.

After breakfast she returned to the gym for another PT session, this time together with the music therapist. He couldn't convince our daughter to play the keyboard ("Mom says I have to read from the staff instead of playing from memory, and I don't have my music books!") but she did play the drums, and his playing and singing made her PT games a bit more enjoyable. Her coordination and strength in her legs are coming back nicely. Note the photo of her balancing on her toes while she hits a beach ball with an oversized raquet.

While she played, I met with her neurologist who offered his interpretation of Monday night's MRI and commentary on her case: Her improvement thus far has been "remarkable", and the damage from this stroke appears as he had expected in the MRI. The images also confirm that she suffered a previous stroke at least 6 months ago, in a similar location on the opposite (left) side of her brain.

The neurologist reasons that bilateral ischemic stroke along with the small size and curious location of the vessels in question all but rule out trauma or a blood clot as the underlying sources of these events. He's looking at two vascular diseases that are still within the differential diagnosis: Mitochondrial myopathy, encephalopathy, lactacidosis, and stroke (MELAS) and Moyamoya disease. Both of these diseases are extremely rare, and neither would be good news for our daughter.

MELAS seems unlikely because children who suffer from it are generally very sick and developmentally delayed in many ways, wherease our daughter is otherwise in perfect health and has always been developmentally advanced. Lactic acidosis has been ruled out by numerous blood tests already, but the neurologist is proceeding with the DNA testing required to most definitively confirm or exclude this diagnosis.

Moyamoya likewise seems to be an imperfect fit at this point. It would explain the apparent bilateral ischemic strokes, but a key hallmark of Moyamoya -- a particularly abnormal pattern in the cerebral arteries -- seems to be missing. In fact, all signs seem to indicate that our daughter's cerebral vasculature is totally normal.

It may be that our daughter's stroke will fall among the 35% or so of pediatric strokes that are idiopathic, or have no known cause. From my current perspective, such a diagnosis would be preferable to either of the aforementioned diseases. We have another meeting with the neurologist tomorrow morning and will be sure to report on our progress in reaching a definitive diagnosis of our daughter's condition.

The rest of the day went well. Her soccer coach came to visit and brought her cards from her teammates and a soccer-ball necklace that she proudly wore for the rest of the day. An afternoon PT/OT session was complemented by a visit from a volunteer therapy dog. Upon pondering a dog among so many humans, our daughter asked: "Dad, how do the therapy dogs know what to do?" My answer of "they just know..." seemed to suffice until one of the volunteers offered that the animals have to go through a certification program before they are allowed to participate in therapy. Who knew that canine therapists needed credentials?

As for my wife and I, we're struggling to deal with the excitement evoked by our daughter's remarkable recovery from her stroke juxtaposed against the uncertainty that looms due to her inconclusive diagnosis, especially when none of the available explanations provide any intrinsic comfort. It's particularly difficult to explain to visitors who are understandably optimistic given an outward recovery that is by all measures a miracle that all may not be well with our daughter on the inside. We haven't even begun to consider how we will explain our daughter's own long-term outlook to her. How can we when it is still so uncertain and she is focused on nothing more than getting well enough to go home, and succeeding so remarkably?

At this rate it's likely that she'll be out of inpatient rehab by the end of the week. In the meantime, we're working to stay one or two moves ahead of the game by lining up our options for the next round.

Sunday, May 07, 2006

Day of Rest

There is a noticeable change of pace in the children's hospital on Sunday, at least in the rehab unit. No therapy (PT, OT, Speech, etc.) is scheduled and the children are encouraged to rest and unwind. The rest of the hospital has slowed down, too. The surgery waiting room near the rehab unit is almost empty.

Our daughter continues to do well and make incremental progress. Today she demonstrated to us that she can extend and spread the fingers of her weak left hand. She can make the numbers 1 and 2 with her fingers. Her grip seems to be getting a bit stronger. After breakfast, she told my wife and I: "Guys, I need to exercise today." We brought her an oversized, lightweight soccer ball that she eagerly kicked up and down the hallway lined with the empty offices of the rehab staff. We tried to keep her from overdoing it, reminding her to walk rather than run, not jump, etc. to reduce the likelihood that she would injure herself. She's walking very well now, her left leg seems to be getting stronger by the hour.

After I left my wife and daughter at the hospital around 11:00 AM, picking up my son from my parents' house, playing with him, and putting him down for his nap, I sat down to review the CDs full of images from my daughter's initial CT and MRI scans. I'm not a radiologist, but finding a couple of images that show what's going on in her brain was not terribly difficult.

Here is a series of five axial MRI images that show an infarction of the internal capsule in the right brain. The images are 5 mm slices, meaning the overall lesion measures 20-25mm in this dimension (click to enlarge):

Here is a different axial MRI view of the lesion:

Here is a coronal MRI view of the lesion:

Here is an image from Gray's Anatomy that illustrates the function of the internal capsule:

This area of the brain is full of neurons that transmit signals from the motor area of the cortex (where movement originates) to the brain stem that ultimately carries the signals to the spine and the extremities. The infarction that occurred following our daughter's stroke disrupted existing communication paths, thus the hemiplegia she presented initially. As is shown above, the nerve pathways through the right inner capsule serve the left side of the body and vice-versa.

The process of rehabilitation following this type of injury to the brain entails the brain "re-wiring" itself to work around these disrupted communication paths so that the cortex can again communicate with the parts of the left side of her body that were initially paralyzed by her stroke.

Tonight we are having a birthday party for my sister at the hospital, which we hope will be a positive experience for our daughter. Tomorrow is going to be a tough day, we will rely on everyone's faith and prayers to carry her and the rest of us through. In the coming days we hope to know more about our daughter's condition, her long-term prognosis, and how we might be able to manage her condition in the future.

Saturday, May 06, 2006

Day 6: Standing on her own.Rehab: Days 6, 7, and 8

Today is Pediatric Stroke Awareness Day. Ironic, isn't it?

On Thursday morning were were blessed to be transferred to the local Children's Hospital, where we had been waiting for a bed since Monday. Our daughter's spirits improved dramatically once we were settled into the new hospital. After an initial visit with her neurologist, she shocked us all by announcing that she was going to raise her left arm and then doing it. Then she asked if my wife would help her stand. Once she was standing, she asked my wife to let go of her and she stood by herself. She was visibly pleased with her own progress.

Later that night I returned to the hospital with our son so that our family could enjoy our first dinner together since our daughter's accident. After dinner she demonstrated what she had done for my wife earlier in the day: Walking unassisted. It's amazing to think that this little girl had no movement on the left side of her body only six days earlier.

Here is a video clip of her walking and lifting her left arm on Thursday night. You can see how proud she is of herself!

Our daughter has a roommate at the children's hospital, a girl who is her same age and just as precocious who suffered a terrible viral illness that blinded her and left her totally paralyzed. She has been in the hospital for more than a month and is doing remarkably well, having recovered much of her movement and eyesight and seems to be on track for a full recovery. She's a great inspiration to our daughter, who had developed a particular dislike for having her vital signs taken while at the other hospital. One morning, when she was beginning to protest to the nurse trying to take her blood pressure, her little roommate, also having hers taken, said to our daughter: "It will go a lot more quicker if you don't move around so much!" And amazingly, that did the trick for our daughter. Seeing her new friend cope with this regular intrusion has inspired her to do the same.

We had an initial meeting with our daughter's hematologist the day we arrived at the children's hospital. He said that she will need to undergo an extensive array of tests on her brain, blood, and heart as he and the neurologist attempt to rule out underlying conditions that may have caused her stroke and would put her at risk for another one. The hematologist originally wanted to have the tests done on Friday, but the neurologist had them rescheduled for Monday to give our daughter time to adjust to her new environment and not interrupt the steady progress she is making on her rehab.

She had her first PT/OT session on Friday morning and also consulted with a speech pathologist, who found no discernible impairment in her speech, cognition, etc. The PT and OT session consisted of supervised, largely self-directed play. She and her therapists blew bubbles and popped them. They played roly-poly with an oversized gym ball. She kicked a beach ball around the gym. They had her pick up and put down objects using her weak left hand. The therapists encouraged her to play and tried to make a few minor corrections to her movements. After 30 minutes of this play/therapy, she was totally exhausted.

She'll continue to have at least one of these therapy sessions per day as long as she is in the hospital. The hospital also has a play room for games, arts and crafts, etc, an outdoor playground, a school, a library, and a number of interactive displays throughout the facility. Her favorite is a big-screen Tic-Tac-Toe game, which she will play with anyone who will join her.

She continues to make steady progress each day. Today she walks much more steadily, her left knee does not hyperextend nearly as much as it did yesterday, and her left foot does not drop as much. She is gaining strength in her left hand and used both hands to open a marker and a bottle of paint in the play room.

She still has significant weakness on her left side. She's prone to injure herself if we let her walk unassisted because she tries to run, jump, etc. and is not steady on her feet. Aside from falling, she risks injuring her left knee due to the increased strain placed on her ligaments by her weakend leg muscles. She still has much impairment when it comes to fine motor skills.

Nevertheless, we are absolutely thrilled with her recovery to this point. She has far exceeded our expectations, and even those of her caregivers. We aren't in a hurry, we understand how long it typically takes for a child to regain a reasonable level of independence following a stroke. We're committed to helping her succeed in the long run.

We're extraordinarily grateful for the faith, prayers, and support from our many friends and family members to our daughter and the rest of our family. We have felt the Lord speak peace to our souls as we have tried to cope with the difficult events of this week and the uncertainty that the future might hold. In the end, we know that He loves us, that His ways are not our ways, that He giveth and He taketh away. Our hearts ache for our sweet little girl in this time of suffering for her, but we know that the Lord has a purpose in this, and though we do not yet see what it is, we know that His purpose will not fail.

While our daughter seems to be well on her way to recovery, please understand that she is not there yet and still needs our faith and prayers to sustain her. Monday will be a critical and difficult day for her as she undergoes numerous MRI procedures, additional blood draws, and more-invasive tests on her heart. She will be sedated for most of the day and must fast for 8 hours beforehand, which will surely interrupt whatever sense of normalcy she has regained over the past two days in this facility and probably cause her discomfort for several days afterward.

Our greatest hope at this time is that the results of these tests will confirm that she is a healthy little girl who suffered a freak accident and has no underlying health problems or inherent risk of another stroke. If that is not to be the case, we'll do the best we can to manage her condition and continue to treasure every day that we are privileged to spend with her.

Friday, May 05, 2006


On Saturday April 29, 2006 at about 7:20 PM my wife and I were boarding an airplane to return home from a trip to a distant city. Our four-year-old daughter and younger son had spent the day with my parents and sister and were enjoying the evening with them at a local park. Our daughter was riding on a swing when she suddenly let go and fell to the ground, landing upside-down directly on her head with her neck flexed. She did not lose consciousness and appeared to be fine at the scene of the accident, although she was crying from the obvious pain of her fall.

As my father carried her the short distance to his house, she told him through her tears: "Grandpa, please just say a prayer for me so that I'll be able to stop crying." It was a plea of perfect faith that she would repeat several other times to caregivers who assisted her before my wife and I arrived on the scene.

Upon arriving home several minutes later with her, our relatives noticed that she exhibited weakness in the left side of her body and immediately called 911. The paramedics arrived soon thereafter and rushed her to the top trauma hospital in our area, where she received excellent and timely care.

In the meantime, my wife and I arrived at the airport and checked our voicemail. While we were in flight I had received a message from my father indicating that an accident had occurred and we should meet him at the hospital as soon as possible. We sprinted through the terminal to the garage and quickly drove to the hospital.

I'll never forget the sight of our daughter lying on a bed in the trauma room among victims of various other accidents on a busy Saturday night. Her left arm and leg were motionless, as was the left side of her face. When she saw us she struggled to speak through her half-motionless lips and tongue and sobbed: "I fell out of a swing!" I felt profoundly helpless. I couldn't hold her or even reassure her that everything would be alright.

The trauma team worked quickly and efficiently. By the time we had arrived, our daughter had already undergone a CT scan that identified a right occipital skull fracture and ruled out any damage to her spine. She soon underwent a CT with contrast that ruled out any hemorrhage in her brain. At that point it was determined that she would likely not need emergency surgery that night, and she was transferred to the pediatric intensive care unit (PICU) for observation until the following morning when she would be able to undergo an MRI scan of her head.

My wife and I agreed that she would spend the night in the PICU with our daughter while I went home to catch a few hours of sleep (it was now after 2:00 AM). I would return in the morning so she could do the same. We were hopeful that her apparent neurological problems were a temporary result of a concussion incident to the skull fracture. I brought her clothes and car seat with me when I returned to the hospital the following morning in anticipation of her imminent discharge.

The next day while my wife slept at home, our daughter underwent an MRI study. She was sedated to prevent her from moving and thereby interfering with the exam. We were blessed to be prioritized at the top of the list of 17 MRIs that were ordered overnight in this busy hospital. After an ad-hoc team consisting of the MRI technician, the anesthesiologist, the PICU nurse, the PICU resident, another random nurse, and ultimately the attending PICU intensivist spent 40 minutes figuring out how to use the two-day-old MRI anesthesia IV infusion pump, the rest of the procedure went fairly quickly.

By mid-afternoon, once the attending neurologist and radiologist had reviewed the results of the MRI, the neurologist came to the PICU to deliver the news that our daughter "appears to have suffered a disruption in the circulation of blood within her brain." "You mean she's had a stroke?" I asked. "Precisely," he said. I was stunned beyond words by the gravity of the situation. The night before, after encouraging results of her CT scans, I had imagined that our daughter had a concussion and simple skull fracture and would be able to return home soon. Now in an instant I understood that she had permanent brain damage that would require months of therapy to address, and that her outcome was far from certain.

The neurologist continued by explaining that while our daughter may recover some of her motor function, it was likely that she may never recover the level of function that she enjoyed before she suffered her stroke. He offered genuine sympathy for her condition and explained that a stroke resulting from a bump on the head seemed to be extremely rare. While he wasn't a pediatric specialist, he had briefly searched the published literature and found only one case -- that of a Turkish boy who fell off a fence and landed on his head -- that seemed to match that of our daughter. He said that he wondered whether the fall caused the stroke or vice-versa.

Since our daughter's stroke was ischemic in nature -- caused by a lack of blood flow rather than a hemorrhage -- the neurologist indicated that he would order an array of lab tests to help understand if some underlying blood or vascular disorder had led to this episode. After explaining all of this to me, he left the PICU and I was left to ponder what it meant.

Our daughter was sleeping peacefully as I sat and considered what the news I had just received might mean to her and to our family. I had managed to keep my composure as the neurologist delivered the bad news, but a minute or two after he left the room I completely broke down. I struggled to imagine how this beautiful, active, talented little girl could have her life disrupted in an instant by such a random event. I wondered how she would cope with the possibility that she may never be able to ride her bike, play soccer, run, or play the piano again. I wondered how she would feel knowing that she might not be able to learn to play baseball or the violin as she had planned. I wondered how her friends would treat her, whether other children would tease her, whether she would be socially accepted, whether she would have the opportunity to marry. I wondered whether a possible underlying condition might prevent her from having children of her own. I dreaded the thought that she might be predisposed to suffering another stroke that would cause further impairment, or worse, end her young life. The anxiety I had felt about her present condition soon evaporated and was replaced by profound sorrow over what the future might hold.

I called my wife to deliver the news I had heard from the neurologist and broke down again when I heard her own sadness. We communicated the news to our extended family members. Many of them came to visit as the afternoon turned into our second night in the PICU.

When I awoke on Monday morning, my wife called to inform me that our daughter had been judged sufficiently stable to move to a PICU step-down bed and would soon be transferred to the general pediatric ward where she could be free of her IV and monitors. After the MRI was done on Sunday morning, we had been anxious to have our daughter's cervical collar removed from her neck so that she could be a bit more comfortable in her bed. We were frustrated by the fact that the intensivists deferred to the trauma physicians, who in turn deferred to the neurologist, who deferred back to the trauma physicians on this decision. On Monday morning the neurologist did a quick physical exam of our daughter's neck and ordered the collar removed. She was transferred to the pediatric ward soon thereafter, into a room she would share with three other girls between the ages of 8 and 17.

Day 3: Note left-side facial involvement and inability to sit upright without a bolster.Prior to the collar being removed, an echocardiogram was performed on orders from the neurologist to attempt to rule out any heart abnormalities that could have generated an embolism that may have caused the stroke. Because we did not hear any news regarding the echocardiogram on Monday we assumed all was well, that is until the test was repeated early Tuesday morning because the first test was inconclusive. A visit by the trauma physician (our daughter was still registered under the trauma service) later that morning struck fear into my heart: The initial echocardiogram showed what appeared to be a "mass" in the right atrium. In addition, further review of her initial radiology results showed two calcified areas in her brain, likely the result of previous strokes. Our anxiety about the future was amplified by the speculation that a heart condition likely existed and that she had already suffered two additional strokes without our knowledge. We began to fear that her stroke would recur in the future.

Day 4: Breakfast in the garden. Sitting with support, some trunk weakness and facial weakness persist.
By Tuesday evening, results from the second echocardiogram were in and showed no heart abnormalities. What a relief! The first echocardiogram could not visualize the right atrium completely because the cervical collar was in the way. I pondered the cost of poor communication and lack of clear decision ownership among the three physicians: A repeated test, repeated interpretation of the test by a pediatric cardiologist and his peers, and a gut-wrenching day for the family of a sick little girl.

Day 4: Air hockey in the 'Teen Room' provides the most diversion yet from hospital life.
As Wednesday dawned we hoped that we would soon be transferred to the Children's Hospital, an environment much more conducive to healing than is the trauma hospital that is designed to save lives. We had spent the past day trying to do anything possible to avoid the room that our daughter shared with the three older girls, whose many relatives didn't seem to realize the correlation between peace, quiet, and rest. We took our daughter's meals outside and had picnics in the "healing garden", where she enjoyed seeing the little sparrows and other birds eat the crumbs she would flick at them. We even saw a hummingbird take a bath in a fountain inside the garden, which she thought was pretty fun. By this time she had regained enough strength and motor control in her trunk that she was able to sit on her own for short periods of time.

Day 5: Breakfast picnic. Trunk strength continues to improve. Note weakness in the left shoulder. No movement in left arm.Wednesday ground on, and our frustration with our situation mounted. The hospital staff had determined to do little else besides monitor our daughter's vital signs and manage her pain until she could be transferred to the children's hospital for rehab and to consult with hematology about the possible cause of her stroke. But there were no beds available in the children's hospital rehab unit. We were stuck until someone was discharged and a bed was available. In the meantime, we were transferred to a more-private room that would afford our daughter more quiet rest overnight. We were assured that we were at the top of the list to be transferred to rehab at the children's hospital, and that a bed should be available on Thursday morning.