Mighty Meghan's Journey: Surgery date

Wednesday, October 24, 2012

Surgery date

Today was a big day!

Meghan had OT and PT this morning. This was the first time Meghan had therapy since finding out about surgery. I talked to them about Meghan possibly needing SMO's. They suggested that we wait until she has her surgery and then request a consult with a PT at Children's while she's recovering. They said a PT at Childrens will do a consult and determine if she needs to be fitted in SMO's or not. She might not need SMO's in hopes that the surgery will improve her low muscle tone. If she would need SMO's, they said we don't want her to be fitted in or around New Ulm as they don't deal with fitting kids for braces often and might not get the best fit for her. The PT staff at Children's deal with it on a daily basis and will get her the best fit if she needs it. So, we will wait until January for this. They also brought Meghan special utensils to use to learn to start feeding herself since her range of motion in her wrists is very limited.

We also got confirmation on Meghan's surgery date, which will be January 2. We will go to the Cities January 1 to do lab work. We will stay in the cities over night. We have to check in at the hospital at 6am and surgery will start at 8am.

We also ordered awareness silicone bracelets for her 2 conditions. We are excited to get them and spread awareness! I will post pictures of the bracelets when I get them in the mail, but that will probably be a couple weeks yet.

I found a place in Mankato that does screen printing and I got the artwork back today! He originally told me it wouldn't be until next week. He's really on top of things and is honored to do the project for us. Once we finalize the artwork, we'll be able to take orders for tshirts and sweatshirts! Things are starting to move along!

Meghan has been taking more steps lately!! She went a few weeks without doing much walking, but has been walking more the last couple of days.

It was a busy, but very successful day :)

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This blog has been created to keep friends and family updated on the medical journeys we embark upon with Meghan. We will share updates on doctor appointments, therapy sessions, how Meghan's life is affected and how life as a family is affected. Please Note: The medical information on this blog are from our experiences and should not be substituted for diagnosis, treatment or medical guidance. Always seek medical advice from your doctor.

When Meghan was 9 months old, she was diagnosed with Hydrocephalus (secondary to Aqueductal stenosis) and Chiari Malformation - both are incurable brain conditions.

At 13 months, Meghan was diagnosed with Syringomyelia throughout her spinal cord.At 22 months, Meghan was diagnosed with Hemihypertrophy of the entire right side of her body with a secondary limb length difference involving her legs, and Grade 2 Hydronephrosis of her right kidney.

Other diagnoses Meghan has are: failure to thrive, macrocephaly, global developmental delays, apraxia of speech, hypotonia, syndactyly, degenerative disk disease, growth hormone deficiency.

Hydrocephalus - Cerebral spinal fluid (CSF) surrounds and protects the brain and spinal cord. Hydrocephalus occurs when there is an abnormal accumulation of CSF within the ventricles of the brain. As CSF builds up, it causes the ventricles to enlarge and can increase pressure within the brain. There is no known way to prevent or cure hydrocephalus. Hydrocephalus is treated surgically by the insertion of a shunt. A shunt is a flexible tube that diverts the flow of CSF from the head into another region (most commonly the abdominal area) of the body where it can be absorbed. Shunts commonly include valves to regulate CSF flow based on pressure and/or body position. If left untreated, hydrocephalus is usually fatal.

Chiari Malformation (CM) - A serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the bottom of the skull toward the spinal cord, putting pressure on the brain, skull and spine.

Syringomyelia (SM) - A chronic disorder involving the spinal cord. The condition occurs when cerebral spinal fluid (normally found outside of the spinal cord and brain) enters the interior of the spinal cord, forming a cavity known as a syrinx. This syrinx often expands and elongates over time, destroying the center of the spinal cord. As the nerve fibers inside the spinal cord are damaged, a wide variety of symptoms can occur, depending upon the size and location of the syrinx.

Hemihypertrophy - A condition in which one side of the body, or a part of one side, is larger in size than the other. Children with hemihypertrophy have an increased risk of developing certain types of cancer, including Wilms tumor (a childhood kidney cancer) and liver cancer. Children with hemihypertrophy may also develop scoliosis. For those that have a secondary limb length difference, there are two main surgical options, shortening and lengthening. Epiphysiodesis, which involves removing part of the growth plate of the longer leg, allowing the shorter leg to "catch up", is performed on patients still able to grow. Bone resection is performed on patients who have no growth left and involves removing part of the bone. Leg lengthening procedures are more painful, involving the insertion of pins to be turned, moving parts of the bone apart. This process is reserved mainly for patients with a discrepancy greater than 4 cm, although some leg lengthening procedures are now done cosmetically. Non-surgical options include attachment of a lift to the shoe, allowing the patient to walk normally.

Hydronephrosis - aka water in the kidney - is swelling (dilation) of the urine-collecting structures of one or both kidneys due to obstruction of urine flow from the kidney. This can impair kidney function. If left untreated, this condition will progress to kidney failure.