Back to School

Last Friday Caleb tried a jog around the block. Went pretty well for the first block, but his stomach hurt some before making it back on the second try. A little rest and things settled down.

Monday saw him returning to school. I think he found it good to get back, but he's still weak. Can't handle a full day of grueling classes and demanding teachers! Kids have been pretty receptive.

Today (Tuesday) he came home quite weak, couldn't stay awake, had a fever of nearly 100. A little to eat, a couple of hours nap, and the fever came down and he was back up.

The problem comes, at least in part, from the fact that he is an "elderly" patient. This procedure is normally performed on kids under one year of age. At the advanced age of 12, his body structure is pretty rigid and the manipulation to get the shunt routed through his body is pretty traumatic. It will take some time for everything to get back in place.

Sometimes it's a little difficult to get a true reading on how well he's doing. Witness the following enlightening conversation...

"How do you feel?"
"Fine."
"What do you mean, 'fine'?," "Do you still have a headache?"
"Yeah"
"Is it as bad as it used to be?"
"No."
"Does it throb?"
"Not as much."
"Does it hurt all over or at your incisions?"
"Both"
"But you're better?"
"Yeah"
"So you still hurt, but not like it used to?"
"Yeah"

Sunday - Going Home

Caleb was watched over faithfully by his Texas Longhorns buddies. It was a good weekend. The Longhorns won their annual archrivalry against OU at the Cotton Bowl and Caleb regained some strength. He didn't really feel that great, but some measure of normalcy began to return.

Later Saturday afternoon, his Melissa Cardinals coaches and football team came to pay a visit and brought with them a signed football which we will put on display in a prominent place .

With medication and a hotpack on his head he has relief from most of his pain.

Sunday showed additional improvement and doctor said it was time to go.

He seemed to be in better spirits today and he has come home. He will be out of school for another week and will resume physical activity as he feels like it - his discretion. But probably no more football. There are football players with shunts in their heads, but it does carry an increased measure of risk.

He is not eating well yet, but I don't think I would be either at this point. Temperature seems to be stable and all other signs are OK as well.

Saturday Update

The doctor just left the room with his entourage of eight residents/students/assistants/fellows. He said things looked like they were going well, but since Caleb is an elderly patient - well, 12 is a lot older than 1 year or less - that his recovery time will be a little slower than if he was younger. It will take more time for his brain to readjust to his cranium. He will be in the hospital for at least another day at Children's Medical Center Dallas.  

He is on morphine and Tylenol and ice packs to control the pain. He wants the room kept dark and it hurts to talk. He wants to "rewind" and not have the surgery!

Guess that won't happen!

Surgery Today!

Alarms started going off at 4:30 am today... We had things to do before we could leave and the hospital is one - two hours away - dependingon traffic. We arrived in good time ready for the big day - 7:45 am.

Hannah came with us and what a help she was to Caleb. She was really an encouragement to him.

A stop at Starbucks for a kickstart to his day.

By 9:00 we were in the prep room, Caleb had on his hospital finest and was ready to go. Surprise! At about 9:15 a knock at the door and we were told we had a visitor. We opened the door and there was the principal from the school that Caleb attends and where Rachel works - and he brought a whole wagon load of goodies gathered up by kids and teachers at school. What a haul!

They didn't take him in until 11:30. It was 12:45 before they actually started surgery and about 2:00 pm when the doctor came by to tell us all had gone well. He seemed pleased and indicated there had been no problems with the procedure.

Caleb wasn't quite as talkative then. He has a 2" to 3" long cut in the back of his head and in the top of his head; and one in his side to allow maneuvering the tube as it was threaded into the abdominal area.The tube starts in the back of his head, travels to the top of the head where the hardware is - a little valve to control the flow, then back down into the abdominal cavity where the fluid drains and is absorbed naturally by the body.

He was ready for nothing more than sleep How does he feel? Not very well right now. He is ready to cancel the operation. He - as expected - is in a lot of pain. He should have a slightly different perspective tomorrow.

Prognosis - No official prognosis has been provided. We were told there are no guarantees - Caleb may still have headaches; He may have headaches because of the lack of pressure - the brain pushing out where the cyst used to be; There may be infections, the tube may get pulled out........ But, the expectation seemed to be that it was very successful and we are thankful for the prayers of many of you and your friends.

Big Day!

Surgery begins at 9:00 am on Friday, October 6 and should last about three hours. If all goes well, Caleb will leave the hospital for a week of recuperation on Saturday.
The problem is pressure against the cerrebellum and left and right occipital lobes.



Here's a fascinating 3D view of the brain if you are interested:

The cyst is across the back of his head and is putting pressure on the brain, actually deflecting it and with the increased pressure comes intense headaches. It also has affected his vision.

Hopefully relief of the pressure will relieve the pain and he will be able to live out a normal life.

What is Dandy-Walker Syndrome?
Dandy-walker syndrome is a congenital malformation involving cerebellum and the cavity in the brain called fourth ventricle. The disease is characterized by the abnormal widening of fourth ventricle, one of the cavities which Central Nervous system fluid (liqour cerebri) takes place and congenital agenezis of vermis (mid-portion of both cerebellar hemispheres). And Consequently a cystic dilatation of fourth ventricle towards the posterior cranial fossa occurs.In addition a clinical situation known as hydrocephalus (increased CNS-fluid and abnormal enlargement of head cicumference) may be present.

It has been proposed that disease is due to generalized dysembriogenesis involving fourth ventricle's upper wall.(during foetal development in pregnancy).Cerebellar hemispheres are also hypoplastic and placed towards cerebral margins. Hydrocephalus occurs in 70 percent of patients because of congenitally obstructed Luschka and Magendie foramens which provide CNS-fluid drainage in normal humans. That obstruction leads an abnormal increase in CNS fluid and head circumference.

What are the clinical symptoms of disease?
The symptoms of the disease begin in the early childhood.The major clinical symptoms are neuromotor retardation (delay in normal neural and muscle tonus development),mental retardation and hyrocephalus. That means delayed development of Central Nervous System and locomotor system resulting in abnormal muscle tonus called "spasticity". Mental and intellectual functions are depressed in half of patients.The other 50% may have normal cognitive functions. Degree of symptoms depends on gravity of congenital disease.If the child has severe malformations from birth the signs may appear at early ages. But sometimes disease may be unnoticed until adult ages.Sometimes the only symptom can be the abnormal enlargement of head.Some childrens may appeal with the signs of increased intracranial pressure such as vomiting,convulsions,agitation or signs of impaired cerebellar function such as equilibrium problems dizzines,abnormal eye movements named nistagmus.

What are the coincident malformations seen with Dandy-Walker Syndrome?
Coincidence with some other anomalies is another important feature of dandy walker syndrome. Disease may be together with the absence of an
intracranial structure, "corpus callosum" which connects both cerebral hemispheres to each other and provides interrelationship between. Facial anomalies, extremity malformations and heart anomalies can be seen with disease.

What is the treatment of Dandy-Walker Syndrome?

There is no certain treatment for disease.Patients may be followed regularly if they dont have signs of increased intracranial pressure.Sometimes especially in case of "hidrocephalus" an intracranial device called"shunt" can be placed to drain liquor cerebri to peritoneal cavity,thus decrease pressure and prevents widening of head-circumference. 50 % of childs have abnormal IQ-level.In the presence of equilibrium problems and spasticity "physiotherapy" should be made periodically.Childrens must be followed by pediatricians,nuerosurgeons and physiotherapists.The anticonvulsant drugs are used in case of epileptic seizures.

We went to the doctor today

Today we visited with Dr. Dale Swift, the pediatric neurosurgeon who will operate on Caleb. Thought you might find it interesting to learn something of who he is...

Dr. Dale Swift was born in Lorain, Ohio. He attended the College
of Wooster in Wooster, Ohio, where he graduated Phi Beta Kappa in 1980. He
earned his M.D. at Case Western Reserve University School of Medicine in
Cleveland and was invited to join Alpha Omega Alpha, the national honor medical
society.Dr. Swift completed his surgical internship and residency in
neurological surgery at Columbia Presbyterian Hospital in New York City. He
completed a fellowship in pediatric neurosurgery at Children’s Hospital of
Pittsburgh in 1992.Since 1992, he has been an attending neurosurgeon at
Children’s Medical Center Dallas, Medical City Dallas Hospital and Texas
Scottish Rite Hospital for Children. He is currently associate clinical
professor of neurosurgery at The University of Texas Southwestern Medical
School. Dr. Swift is certified by the American Board of Neurological Surgery and
the American Board of Pediatric Neurological Surgery.Dr. Swift’s research
interests include the pathophysiology of Chiari malformations, neuroendoscopy in
children and arachnoid cysts. He participates frequently in international
pediatric neurosurgical training, most recently in Bangalore, India, under the
auspices of the International Society of Pediatric Neurosurgery.Dr. Swift and
his wife, Denice, have two children.

Dr. Swift consults all over the world and in a couple of weeks is meeting with some French doctor friends who, with him, have been developing some new techniques. Normally a shunt would be placed strategically in the brain to drain the excess fluid, but he is working on a technique that would open the required area without the use of a shunt and it would provide better flow control, reduced potential for infection and other problems caused by a foreign body in the brain. He is going to give them a call in the next few days to discuss Caleb's case.

At any rate, in about 3 weeks, we will go into Children's Medical Center Dallas for his surgery. He will go in one evening, surgery the next day, come home the following day for a week of recovery.

Consultation Day

On October 12, 2003, Egyptian conjoined twins were separated in Dallas (http://faculty.washington.edu/chudler/ntwin.html) The same neurosurgeon will be caring for Caleb.

Thursday morning, we go to Children's Medical Center (http://www.childrens.com/Patients_Families/HospitalServices.cfm?servicesID=52) to consult with a team of doctors who have studied Caleb's tests from last week. We expect to make a decision as to which procedure to pursue.

Caleb's disorder is known as the Dandy Walker Syndrome (http://healthlink.mcw.edu/article/921724673.html). There are several approaches to take. Check back here Thursday night and I should have an update.

Thanks for praying

Caleb - Wednesday

Time to go home!

We met with the doctor this afternoon and reviewed the condition and some of the possiblities. Seems that the consensus is moving towards some kind of shunt. However, we meet with the neurosurgeon next week to finalize plans.

Meanwhile, Caleb was dismissed from the hospital today, will expect to return to school tomorrow and meet the next round of doctors next week.

Today he was in good spirits and looking a whole lot more like himself!

Stay tuned... more to come.

Mack

Tuesday Night

Caleb was in pretty good spirits tonight. He's learning how to operate all the machinery he's hooked up to. He likes to move his fingers, twist his muscles and do whatever to make the numbers on his monitor change.

He also got his Game Boy(s) tonight so everything is fine now. He's curious about the tests and procedures he's going through.

Thanks to so many who are praying for him. We appreciate it so very much.

Meanwhile, this may be the "break" Rachel has been needing. Stuck in a hospital with nowhere to go. Now she'll have to get some down time - maybe some rest to help with her own healing.

Keep checking back here as I will post when I have new news.

Caleb Update

A lot of new experiences for Caleb today. If you are interested, here's the web site of the hospital where he is being treated: http://www.mcchildrenshospital.com/

Rachel is there and is very satisfied with the doctors who are caring for him. So far, three ophthamologists, a neurologist and a neurosurgeon, and numerous supporting medical professionals.

Last night while going through ER, Rachel and Caleb had opportunity to really begin to discuss what was going on. We had intentionally not told him ahead of time so he wouldn't sit around and worry for days before going in. Now that it was happening, he was very relieved to know that there are explanations for the headaches and other physical symptoms he has noticed.

Today he endured three ophthamological exams; a 3-hour MRI of head and spine (now he has a headache). Doctors have stated that up to now he has compensated for the loss of brain capacity, but he's reached the limit of that option. He has excelled academically, musically and enjoys sports - a pretty successful, well-rounded adolescence.

His ailment has a name as well: meet Dandy-Walker

What is Dandy-Walker Syndrome?Dandy-Walker Syndrome is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid filled spaces around it.

The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present.

The syndrome can appear dramatically or develop unnoticed. Symptoms, which often occur in early infancy, include slow motor development and progressive enlargement of the skull. In older children, symptoms of increased intracranial pressure such as irritability, vomiting, and convulsions, and signs of cerebellar dysfunction such as unsteadiness, lack of muscle coordination, or jerky movements of the eyes may occur.

Other symptoms include increased head circumference, bulging at the back of the skull, problems with the nerves that control the eyes, face and neck, and abnormal breathing patterns. Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system including absence of the corpus callosum (the connecting area between the two cerebral hemispheres, and malformations of the heart, face, limbs, fingers and toes.

National institute of Neurological Disorders and Stroke

For you who are interested there a numerous web sites devoted to Dandy Walker. He does not exhibit many of the "typical" symptoms, but certainly some are evident - especially as you begin to assess them. He looks normal, is a handsome, intelligent, outgoing, fun-loving kid.

Right now (4:00 pm, 9/19/2006) we are waiting for the neurosurgeon to review all the MRIs, CTs and other tests with the pediatric neurologist to decide which of the following standard actions to pursue:

• Insert a shunt for drainage
• Drain the cyst - but without a permanent shunt
• Medication to treat the symptoms - headaches, etc.

We do not know right now when he will be dismissed from the hospital.

We covet and thank you for your prayers.

Truly, God is gracious
Mack

New Development

Tonight, Rachel left home with Caleb to go to the Emergency Room at Medical City Children's Hospital in Dallas.

Caleb has a cyst on the base of his brain. He has had headaches for years and we have probably now discovered the source. However, in the past week, he has gotten noticeably weaker, more lethargic, inactive, not hungry, tired, nauseous, and this evening EXTREMELY weak.

He has an appointment with a pediatric neurologist for mid-October, but I guess it will now be late September...

Oh, by the way... I've been cleared to return to work at DFW Airport starting at 4:00 am tomorrow (Tuesday).

Rachel is not doing well. She is taking a month off from the hospital to try to heal. Her leg hurts more, her ribs/chest hurts, and now her wrist hurts from using the crutch. She has a choice, walk on the broken leg - and it hurts and doesn't heal well - OR, use a crutch to protect her leg and hurt her wrist. She needs to sit down and rest!

Medical update

Went in for a CT scan last week, then to the doctor for an update on Friday. The spleen still shows evidence of the injury, but appears to be healing satisfactorily. My ribs still hurt if I'm not careful.

No new medical discoveries but no return to work, yet. I'm still "puttering around the house", but getting anxious to do more. Fortunately I have enough computer work to keep me busy for awhile.

Rachel says for the first time she "feels like a human" since the accident. She continues to have a great deal of pain in her chest from the cracked ribs. Now, her wrist hurts from having to use a crutch to support her broken leg - so either the leg or the wrist - but not both can be free of pain for the time being.

Accident Photos

5-Star Rating must be worth something!

The accident - statistics

The highway on which the accident took place, TX 380, is in the Guinnes Book of Records as the state highway with the most head-on collisions.

The person who hit us had been at a birthday party drinking most of the evening before. He has one other arrest - possession of marijuana. He is a former Marine intelligence officer. He refused all roadside sobriety tests so had to be taken to hospital for forced blood sample. He is free on $5000 bond.

Truck that hit us was an extended cab 2001 (or2) full size Chevy pickup. Police are awaiting warrant to download computer data from the pickup. They expect speed to be in excess of 80 MPH.

Driver was charged with Intoxication Assault. The county in which it took place takes a very harsh approach to alcohol-related accidents.

910 feet between vehicles after accident - a record for the investigating team with 25 years experience.

The Accident

Last Sunday morning (8/06/2006), Rachel, Caleb and I were on our way to church when a drunk driver crossed the median of a four-lane, non-divided highway I saw him coming and tried to avoid him, but he was coming too quickly. I was looking right at the driver as he hit the driver's door of our car - a 2006 Hyundai Sonata (5-star safety rating). The Chevy pickup skidded on down the highway while we did a slow360 plus and came to a stop in our own lane(s). More about him later.

We were all conscious. Rachel was moaning, complaining of intense chest pain, Caleb had nothing but the surprise of a sudden stop and I thought I was OK except for a few minor glass cuts. I had a slight dull ache in my abdomen.

Witness popped up like gophers on the prairie and came running to see if we were alive. They began offering descriptions of the accident, help and phone calls to 911. Rachel and Caleb got out of the car and walked to a shady spot at the side of the road where they sat on a log. I couldn't get out because my door was jammed. I waited patiently thinking it was just a matter of time before I'd get out, we'd get a quick check up at the Emergency Room, get an insurance-supplied rental car and be about our business.

Next thing I knew, police and ems were on site (within 3 to 5 minutes) and they were asking me all kinds of questions (I thought Rachel was the one who was hurt) and then I had to tell them I was beginning to black out. They put a neck brace on me and wouldn't let me move. Pulled me out by my feet onto a board, rolled me into an ambulance and cut my shirt off to apply a myriad of wires and sensors, tied my head down and put on the Oxygen mask. Next thing I knew, I heard a helicopter coming - I thought it was for Rachel. Wrong again. I was rolled out of the ambulance and over to the life-flyte as quickly as they could and I was air-lifted to Parkland Hospital - one of the premier trauma centers in the country. There I was met by a team of interns, nurses, residents, surgeons, ..... they cut off all my clothes - so much for dignity - covered me with a little sheet (somewhat) and began to examine my neck and back which I could have told them was fine. They concluded the same and finally I was at least released from my neck brace.

While in the ER, they slid cold hard pads under my back and pelvis for X-Rays, then injected me with dye so they could do a CT Scan - head to pelvis. There they found that I had a lacerated spleen.

After a great deal of deliberation by the medical team which includes specialists from Southwestern Medical Center, it was determined that it was best to go in to determine extent of damage and attempt to stop bleeding. At about 4:30 pm, I was prepared for an angiogram - a not entirely pleasant experience, but I'm sure worse exist. Five hours later I was returned to my ICU quarters for rest observation. They attempted to stop the bleeding in several places with coils, but were not entirely successful. However, the bleeding had stopped in spite of their efforts so several days of observations began. I was subjected to six contributions of blood per day for the next four days while they watched to see if the count was stable. It was!

After much discussion and since my work is in no way physical, I was allowed to go home to "putter around the house" for a few weeks. Thursday afternoon I was released from Parkland.

The problems is that this kind of injury can suddenly and unexpectedly reappear with little notice, so I have to be particular sensitive to what's going on down there. I return in two weeks for another CT scan at which time they will assess the damage and the next steps if any.

Rachel... While Rachel's injuries were not life-threatening, they were more painful. She has crocked ribs at the sternum and a broken tibula. It remained in place and has no cast - just a wrap for the next couple of weeks. She has crutches to use at will. The leg is sensitive, but the ribs are very painful and little that can be done to improve it other than pain medicine. She has no remaining sick leave and will have to work some of her hours at the hospital.