Tuesday, October 17, 2006

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, October 08, 2006

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, October 07, 2006

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!

Friday, October 06, 2006

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.

Thursday, October 05, 2006

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.