Mighty Meghan's Journey

Thursday, February 21, 2013

Thursday

The biggest news....we FINALLY got to hold Meghan Wednesday night!!! I can't even explain how much that helped me. Just being able to hold her and comfort her was the best feeling so far this week! She was out cold while cuddling with mom :) Meghans head bandage was removed Wednesday morning and we got our first look at her incision Wednesday evening after we held her. We were moved out of PICU to the regular floor Wednesday afternoon as well. Meghan did not like all the moving around during the move. The rooms in PICU were spacious and sound proof so we didn't hear much noise from other patients or nurses. That is not the case in the new room. It's taking Meghan (and mom and dad) a while to adjust to the noise. Right now, the biggest issue is pain management. Once we were moved out of PICU they started weaning Meghan from the pain meds. We are still working on pain management trying to figure out what works best for Meghan. She does not appear to be in pain when she lays in bed but once we move her neck or adjust her position she is not a happy girl! The physical and occupational therapists were here first thing this morning to work with Meghan. She will move her face and neck to the right, but not to the left very willingly so we are doing a few things to loosen up those muscles so it's easier for her to look to the left. We will be getting Meghan up in bed more often today to keep muscles loose as well. She is eating solids now and has held everything down so that is awesome! Meghan is a very tired little girl and she looks forward to being able to sleep in peace at home with out interruptions.

I am missing Molly, so I love cuddling with my stuffed puppy.

YAY I can finally sit up in bed!

2 comments:

AnonymousFebruary 21, 2013 at 4:25 PM
Grandma is so happy to see pictures of you. I am glad to hear that Mom and Dad were finally able to hold you. Keep working those muscle--Grandma knows it probably isn't easy but it will be worth it in the end. Take care. Grandma misses you and loves you.

Grandma Linda
ReplyDelete
Replies
AnonymousFebruary 21, 2013 at 7:02 PM
Love you Meghan and I'm glad to hear that you are doing good!

Love, Aunt Jennifer
ReplyDelete
Replies

Subscribe to: Post Comments (Atom)

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.