Wednesday, March 11, 2009

It's time for an update




So I know it's been a while since I've written anything but it has been a little busy. So a lot has happened since Christmas! First of all we moved to Utah and are very happy to be with our family again. And I know that our parents were really excited to have their grandaughter so close now. Frank works at Freeway Cadillac and Mazda and really enjoys it. I found a job as an on-call nurse for a hospice company here and have really enjoyed working with them.


The biggest news however is that on March 5, Mya went to Primary Children's Medical Center to have open heart surgery to repair a heart defect called Tetralogy of Fallot. They started the surgery at 8:30am. The nurse would come out to update us every couple of hours.We were on pins and needles in the waiting room. The first update came at about 9:30 letting us know they made the first cut. About an hour later they let us know that they had successfully stopped her heart and the bypass machine was doing the work for her. At about 12:30 the nurse came out to let us know that Dr. Kaza was done with the repair and her heart was beating again, they were closing her chest up now. At 1:30 Dr. Kaza came out and told us the surgery was a success and we would be able to see her in the PICU in about 30-40 minutes. I can't even begin to describe the feelings and emotions I had that day. The thought of her little heart no longer beating was horrible. And the pain, discomfort, and confusion she would soon be feeling was horrible. As Mya's mother, I feel like my baby looks to me as the one to trust, the one who will take care of her. So knowing that she has no idea what's about to happen to her, anticipating her discomfort, preparing for the tubes, IV's, and ventilator she'll be in the ICU with, and realizing that she will look to me to save her and I won't be able to do anything was breaking my heart! And after she woke up in the ICU and looked at me with those pleading eyes, I just broke down and started crying. In my mind, I thought that she blamed me for letting this all happen to her. She wouldn't smile for days even though she was awake and alert. There were times when she would look at me and then look away as if she were angry. The nurses kept saying it was because she was still sedated but it still broke my heart. Despite all the tubes and wires, she was making a remarkable recovery. The team in the ICU along with her cardiac team decided she was ready to come off the ventilator the next morning. She did have some swelling from being intubated that was making it hard to breathe. There was a possibility of her being re-intubated but in the end she pulled through and they were able to avoid that. On the third night in the ICU her sinus rythm was off and they had to pace her heart for her over night, but the next morning they stopped the pacer and her heart was pacing itself again. By monday morning she was stable enough to move her to the surgical floor. They took out the line in her neck, the arterial line in her ankle and a peripheral IV in her hand leaving only one IV in her other hand. They also took out the wires in her heart that allowed them to pace her heart if necessary, and her chest tube for drainage. By Tuesday they decided she was stable enough to go home! Her recovery has been absolutely amazing. Her cardiologist told us to expect to be there for 7-10 days for a best case scenario and 3-4 weeks worst case scenario. She ended up only staying in the hospital for 6 days! Thanks for all of your prayers. She is now smiling and laughing, kicking and babbling like she was before the surgery. She does have to stay on oxygen continuously for about two months but it that's the worst and I get to have her home, I'll take it! There is a little bit of a difference in her personality. Before the surgery she was very independent. She would wake up from naps and just play with whatever toys were around her. She would go to sleep on her own. The first day back home I could not put her down. The second I did she would start screaming and crying. a look of fear was in her eyes. Today I am able to put her down and she's okay with it as long as she can still see me. I think the experience is still fresh in her mind and there is still some fear and apprehension but it's slowly going away. In the meantime, I'm just glad to have her home.

2 comments:

suzie said...

I am so elated to hear that the surgery went well. I cannot imagine what you have been through, but I want you to know that I am here for you. Even if you just need someone to hear you cry. Thanks for the update, I miss you.

Hatty Sauce said...

Hello, I was browsing through blogs and thought that your blog soo moving. I wish you and your family all the best for the future.
xxx