Sunday, July 15, 2007

Maryam's Future Surgery Update

Maryam had a pediatrician appointment on Tuesday where we found out that she had only gained 7 ounces in 3 1/2 weeks. The appointment was set up to see if Maryam's oxygen could be weened down. Right now she's at 1/4 liter oxygen per minute. The test was to see if she could go down to 1/8 liter of oxygen per minute.....she FAILED! This was the second time we have done the test in 2 1/2 months. This led her pediatrician, Dr. Ratnezar, to call Maryam's Neonatologists for advice and their opinion on what steps should be taken next. One of Maryam's major complications in life is her Chronic Lung Disease, she has a hard time taking an entire feeding from her bottle because her lungs just aren't strong enough to suck, swallow and breathe all at the same time, she doesn't have the endurance. On top of the Lung Disease, she also has Severe Reflux. Every time we feed her, she throws up. The doctors think she is throwing up over 1/3 of her daily feedings per day. Every time she throws up, she's at risk of aspirating some of her own vomit. The doctors think that she is having Micro Aspirations, and that is why her lungs haven't been able to get any better in the past 2 1/2 months. She's on medicine for her reflux, but it doesn't appear to be working.
Consequently, the next step is surgical. We met with a pediatric gastric surgeon and her Neonatologist on Thursday and they agreed, the next step is to have a surgery with two procedures. One procedure is called a Fundoplication, the other is a G-Tube Placement. The surgery is pretty extensive and will involve changing her anatomy for the rest of her life. I've included some links so you can read about both procedures. The first link is for the Fundoplication, the second for the G-Tube.
She will be in the hospital for a minimum of a week and as long as 2 weeks, as long as there are no complications. She will need to be intubated and put on a ventilator. She will be under a general anesthesia and it is open surgery, not laproscopic. (her body is too little for laproscopic) Tomorrow, Monday, we have an appointment in radiology at 10am for an Upper GI to be done to ensure that her intestines are working properly. After that, she has lab work that needs to be done. The surgery is scheduled for Wednesday at noon. The surgery will be done at San Diego Medical Center, Kaiser Permanente. This is where she was born, they're RAD docs and nurses and we trust them implicitly. Unfortunately, the hospital's pediatric unit isn't equipped to handle a child or infant on a ventilator and there is talk of having her transferred to Children's Hospital. Her Neonatologists are fighting the hospital to make sure she is able to be re-admitted to the NICU so they can treat her. Its against hospital policy for a baby to come back to the nursery once she's been discharged, for fear of getting the babies that are still there, sick. Their plan is to put her in a small room just outside of the nursery so that her same docs and nurses that treated her for the first 5 months of her life, can nurse her back to health again. They LOVE her.
I'll send another update in a few days to let you know how the Upper GI went. Say your prayers, she needs all the help she can get!!!!!


carly marks said...

Best of luck to Maryam and all my love. It she should be more comfortable after the fundo. I hope that she is able to be admitted to the NICU post-op. We do love her so. Carly Marks

Anonymous said...

May prayers for Maryam and for Mom and Dad as you go through this difficult time. It sounds like you have great trust in the medical professionals taking care of her, so I'm sure they'll be extra careful with her and will make sure she comes through this with flying colors! God bless!

janeth66 said...

We wish you a quick recovery, Maryam! You are always in our prayers.

Stay strong baby!


Rob & Janeth

Maile, David and Irene said...

Maryam and family,
we love you guys so much!! Our hearts and prayers go out to you every minute!! From the days we met you in NICU to forever we will always have a loving bond with you guys. Trust in the Lord for he will see you through these difficult times. He will guide the surgeons and heal Maryum. We wil be praying for you as requested in accordance with 1John 5:14-15.
Our love,
David, Irene and Maile
(your old NICU roommates)

Anonymous said...

I work with Janette at the Chamber and she has kept us updated since Maryam's birth in December. I will continue to pray for this little one and her mom and dad as well. GOD IS ABLE!

Love and prayers,
Jo Shaw