Tuesday, February 11, 2014

Severe Speech Delays: Chelsea's Story Part 2

Part 2

A few weeks ago I shared the beginning of the story of my oldest daughter's severe speech delays. You can read about it here  if you missed it or need a refresher. I promised to tell more of the story so today I want to share about the surgery experience for both of us.

After going to speech therapy for over a year, we finally decided to take her to a clinic at a children's hospital. The clinic specialists talked to us, listened to her speech, and did a few basic tests. When we told them that my husband had to have surgery to speak they knew she had the same problem and that it was genetic. We were sent for blood tests for my husband, daughter and son. The tests confirmed the specialists' suspicions. Both my husband and daughter have what is called Di George Syndrome or 22q11.2 deletion. Basically a part of the 22nd chromosome is missing and there's a giant list of possible effects of this missing piece.

A few months later, we went in for x-rays to confirm that she did indeed have the velopalatal insufficiency. In other words, her pharyngeal flap wasn't long enough to close off and make speech sounds That August, we took my three month old to my moms and our four year old to the children's hospital for a two hour surgery to lengthen her pharyngeal flap.

That day things went WAY quicker than I expected. We arrive and they are checking her in and explaining things to us. They let her pick out a flavor for when they gave her the mask to put her to sleep for the surgery. Next thing I know they were whisking her down the hallway to surgery. Our pastor was there with us and my mother in law. It was a LONG two hours!

I really wasn't prepared for the condition my daughter would be in afterward. She was kept in the PICU that night and I stayed with her. I still remember going to see her shortly after surgery and seeing her mouth full of blood, hooked up to IV for pain medications and such. Whenever she woke up throughout the night she would start crying. Thankfully the nurses were wonderful and came to her quickly to help her.

The next morning we were moved to a regular room with bright yellow cabinets and much more comfortable and private. Chelsea was still sleeping a lot and not very happy when she was awake. They tried getting her to eat but just having major surgery on her throat she wasn't about to go for that. After a while she started waking up for longer periods and we went down the hall to the giant play room for a while.

Surgery was Thursday and by Saturday I was wanting to go home. She still wasn't eating and the nurses were trying to get her to take Tylenol for pain so they could take her off the IV. Finally they said we could take her home if we thought we could get her to eat and take some pain medicine. We were to bring her back if we had any issues. I was SO thankful  to get out of there and get my three month old whom I hadn't seen in a few days.

Once we were home we did get her eating yogurt, drinking water and taking some Tylenol. She just wasn't our usual happy girl though! She would be asleep on the couch and suddenly flailing around. We  rarely got a smile out of her until almost a week after the surgery.I felt like we'd traumatized her but I knew it was for the better and had to be done.

About a month later we started speech therapy again and you'd think things would come along quickly for her. But they didn't and her therapist started questioning if the surgery had even worked. I'll share the end of the story soon!

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