Sleep Study update

Hi all. I guess you are wondering how Ivey did during her sleep study?

Based on my experience with Ivey Monday night, the trach would come out when pigs fly. She just wasn't herself. It seems she has a cold. The congestion prevented her from breathing through her nose well. Every few minutes she would shoot her cap across the room if she coughed. That cap can be lethal. She could not get comfortable. She could not suck her thumb. In a nutshell, she could not sleep.

I stood over her crib for the duration of the night (9p-6a) semi crying, semi hallucinating from exhaustion, semi delirious from her coughing and just plain ole frustrated. I stood pleading that things would improve. Finally around 4 am I sat down on the bed and I think I dozed off while sitting up for about 45 minutes. Then at 6am the nurse buzzed me on the intercom to let me know it was finally over and we could go home as soon as Ivey was unhooked from all of the sensors. That was that.

I did speak to the nurse practitioner later in the day. The pulmonologist glanced at the results and did not see anything that shot red flags up. Amazing. He should read the study by the end of the week. If all goes well, we will be back at Scottish Rite next week to attempt decanulation. However, if I hear from the NP before the weekend, we will be rescheduling a sleep study, no decanulation.

Today Ivey and I spent the day at Scottish Rite making pre-op rounds at the ENT, registering in Day Surgery and making our way through anesthesia. Same old routine. In between visits we did visit with Steve and Nicki. They are taking everything in stride. I am so proud of them. So please keep the Hunt Family in your thoughts and prayers. I will double check the web address and post their website so you can all keep up with them.

Ivey also went to the Seating Clinic today. I can't wait to post pictures of her new 'stuff'.

Short summary:
Friday Ivey will be in Day Surgery at Scottish Rite for an ABR and possibly new tube in one ear. Next week she will attempt decanulation pending her sleep study results. All of these things may seem so minor compared to issues that have come up in Ivey's past, but both of these procedures will effect Ivey to the core. These two things will make her quality of life better. The ABR will move her one step closer to hearing the world she in which she lives. Without her vision, Ivey depends on her hearing and right now it is compromised. So we desperately want to fit her with hearing aides so one more door opens for her. Can you imagine going outside and not hear the sweet sound of birds chirping, especially now that it is Spring? I want Ivey to hear all of the wonderful sounds. Where the trach was a setback initially, except for the fact that it literally saved her life, decanulation will be a true positive event in Ivey's life. I would never want to remove the trach if it would compromise her safety or make her uncomfortable. But, she is ready, so very ready to have a life without the boundaries of her trach.

So please please please pray for her and send her words of encouragement. So many wonderful things are just within fingertip reach. She has worked so hard these past two years, overcome so many obstacles; I think she is due a ray of sunshine. Things are always easier to face and fight when you know you have an army behind you. We need encouragement now.