Mighty Meghan's Journey

Wednesday, February 20, 2013

Wednesday - mid-day

Meghan had a great night last night! She fell asleep around 9pm and woke up a couple times throughout the night while the nurses gave her meds. She woke up around 4am and was up until around 11am. Dr. Petronio (her NS) came to see her last night around 7pm. He said she looks great! Dr. Petronio's nurse practitioner checked on her this morning and removed her head bandage. There is no leakage from the incision sight so that's great news! We haven't seen her incision yet as she is still on bed rest and can not sit up until atleast 5pm tonight. We are currently still in PICU. She is no longer on a liquid diet, but because she is laying at a 45 degree angle, we are feeding her soft foods so she can easily swallow the food. She had about a cup of apple sauce so far. Her appetite isn't quite there yet. She has had good neuro checks but does not let the nurses shine the light in her eyes (I don't blame her!) The plan is to start weaning her very slowly from the steroid med later today. This will take about 2 weeks to completely wean her from the steroid. She is on the steroid to help with swelling and headaches. There hasn't been any talk of starting to wean her from any of the other meds as of yet, which is okay. There isn't much else going on but I will update when we know more.

My sweet little Meggers

My head bandage was removed today!

2 comments:

Danny & Linda DahlFebruary 20, 2013 at 3:00 PM
We are praying for Meghan's fast recovery.
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AnonymousFebruary 20, 2013 at 8:44 PM
Grandma is glad to hear things are going good. I am sure Meghan will be happier once Mom and Dad can hold her. I can't imagine how hard it is not to hold her and for her to wonder why. Grandma will continue to pray every day for Meghan to get back on her feet quickly. Love you all.

Grandma Linda
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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.