Mighty Meghan's Journey

Monday, February 18, 2013

Meghan is resting as comfortably as possible in PICU right now. Sounds like she will be in PICU for 48 hours (she'll be moved to regular room after PICU), but that depends on Meghan. It's too early to tell right now as she's still pretty drugged up from anesthesia. Tomorrow will most likely be a little different story. But, for now, she's been sleeping okay. She is on pain meds for the pain and steroids for swelling and headaches. The hardest part is when she wakes up she holds out her arms to be picked up and we were told she cant be held for 48 hours. She needs to stay at a 45 degree angle in bed for 48 hours. The biggest concern is vomiting the first 1-3 days. So far, she hasn't vomited (knock on wood). Meghan did require a little oxygen tonight for a short period of time. She had a little rough patch around 10pm but is sleeping now. Jeff and I are taking 2 hour shifts for the next few nights so someone is always up with her. Will update more tomorrow.

2 comments:

AnonymousFebruary 19, 2013 at 2:56 PM
Meghan was definitely a trooper while we waited for her to go into surgery. I'm sure it is the most difficult thing for her to want to be held and Mom and Dad not being able to hold her. Meghan is a fighter and she will get through this. Grandma really misses her and I think it would have been easier on me to have stayed up there even though Mom and Dad have been great updating Grandma. Love you Meghan.

Grandma Linda
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UnknownFebruary 20, 2013 at 9:39 AM
I cannot begin to imagine what you and Jeff have gone through the last year and a half. You both are amazing parents. I sit here at work in tears as I read your blog posts. I feel helpless because I wish there was more I could do. Meghan is truly an inspiration to all.

Meghan, you are such a sweet and precious little girl. We will continue to pray for you. Your aunt loves you very much and I hope we can spend more time with you and Luke after your recovery. I cannot wait to give you hugs and kisses!

We love you all.

Aunt Stacey
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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.