Moments with Moriah

Tuesday, July 7, 2009

Transfer will not happen tomorrow, Wednesday.
Let's hope that it will go through for Thursday, and that Huntington Hospital will be able to take Moriah.
Otherwise, we will have to wait until the following week because they wont transfer from Friday-Sunday.
Thank you all for your prayers.

5 comments:

Kristi said...: Thinking of you as you wait...
And loving seeing Miss M in her exersaucer! Yay!!!; July 7, 2009 9:33 PM
joan said...: Thinking of you all as you wait for the plan-you must be so anxious to be closer to home and closer to getting Moriah home! Also, prayers for her health as she transfers!; July 8, 2009 10:09 AM
Anonymous said...: AAAAHHHHH!!!! I love Huntington! The PICU is our home! You will absolutely love them there! LOVE THEM!!!! Seriouslly!
Kathie; July 8, 2009 10:20 AM
Ashley Kostjuk said...: Oh, come on!!! That would that be so great for you to be at Huntington!!! Well, you know what we're praying for!!!!!
Can't wait to see you and sweet Moriah girl.
Love you guys oh so much!
Kostjuk fam; July 8, 2009 11:19 AM
Lisa said...: I'm looking forward to having you all back at CHLA. I hope it is soon.; July 9, 2009 3:10 PM

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Moriah's Diagnosis and Medical History

Diagnosed in utero with a heart defect, Tetralogy of Fallot, Pulmonary Atresia, and Multiple Aorto-Pulmonary Collateral Arteries (Mapcas)

Open heart surgery at 5 days old to connect her pulmonary artery to her aorta (Waterston shunt) - they saw later that this was not even a pulmonary artery but a collateral

Clinically Diagnosed with CHARGE Syndrome
She has a mild coloboma in either eye, heart defect, delayed in growth and development, has a horse-shoe kidney, and failed her newborn hearing screen

Pyloromyotomy surgery to correct her pyloric stenosis.

G-tube Surgery

Gastro Esophageal Reflux Disease (so severe it lead to sleep apnea)

GJ tube placement: she is continuously fed through the jejeunem (small intestines) while g-tube continuously drains to gravity

Was thought to have a seizure disorder, but we saw that these "jerky" movements ceased after stopping her Reglan (a common motility drug that may cause severe side effects )

A total of 5 Heart Catheterizations

On continuous oxygen as of June 19, 2008

Nissen Fundoplication Surgery September 2008

A FULL REPAIR OF HER HEART on November 14, 2008 -Unifocalization Surgery performed by Dr. Frank Hanley at Lucille Packard Children's Hospital

Open heart surgery to fix a compressed lung on December 10, 2008

Diagnosed with Abdominal Migraines or what is also known as a variation of Cyclic Vomiting Syndrome . This is resolved with routine doses of Neurontin and if in case of a breakthrough, PRN doses of Ativan)

Right Diaphragmatic Plication after phrenic nerve injury from previous heart surgery January 2, 2009

Severe Septic Shock February 9, 2009

Tracheostomy surgery at 15 months old, April 2009

Has battled fevers and infections, the majority being of unknown origin, since December 2008. We have finally found that prophylactic antibiotics help, and we have gone 1 month infection-free, after not being able to go longer than 14 days without infection since December. She is diagnosed with an undefined immune deficiency

She is being tested for a mutation of the Digeorge Syndrome gene. She does not have the deletion of the gene.

Heart Status: Heart Fully Repaired. Although she does have pulmonary hypertension, which is being treated with Sildenafil (a.k.a. viagra!) We pray that this will subside as she gets stronger. Otherwise, she only has to have open heart surgery to have her pulmonary valve replaced every few years, and her heart caths every 6-12 months.

We finally found out that Moriah cannot hear out of her left ear, and has moderate hearing loss in her right ear.