HOME!!

Hi Everybody! We are home!! We were supposed to be released Monday, then got bumped to Tuesday because the pulmo dr wanted to see if Chrissy could do C-Pap on the vent at night instead of regular vent settings. She failed that test miserably, and had apnea so much the first two hours, they gave up and put her back on the vent! She is doing great during the day though on just a trach coller part of the day and HME part of the day . We didn't get home until late yesterday and spent the evening getting her settled and the vent set up at home and all that. Today we spent the day moving her room and getting supplies put away and organized. Her bed was in the master bedroom with me, but now we have night nurses and since it would be kind of weird to have a nurse in our bedroom (LOL) we moved Chrissy to her own "room" (it is actually our study/dining room but now it is hers).
Chrissy is doing so good with her trach and we are really happy with the results. She breathes great now! She and I thank you all so much for all the prayers and well wishes!!

The saga continues

Hi again everyone. Well, we are still at the hospital. Chrissy is doing okay. She is being weaned off the vent and they are very slowly doing that. Don't ask me why it has to be such a long, drawn out process, but that's the way they do things here! She has been on straight trach collar trials (just using trach collar with warm humidified air on a blowby) today. First they let her go one hour on it, then back on the vent, then two hours off, and back on the vent, then three hours off. She is back on the vent for tonight and tomorrow will go longer off the vent. One thing they are concerned about is her central apnea while she is sleeping, so tomorrow night she will have a sleep study done - half the night on the vent and half the night on c-pap through the vent. If she tolerates the c-pap only and doesn't have a lot of episodes of central apnea, she will go home with a portable vent that uses c-pap (sorry, dont know the technical term) through it. If she has a lot of apnea episodes even with the c-pap, then she will go home on the vent at night, but off the vent during the day. Hope all that makes sense!!
She is adjusting well to her trach. We are only having to suction her three or four times a day, which they tell me is a good thing! At night we maybe have to suction once. The respiratory therapist says that the vent keeps them pretty clear of secretions, and we may see a slight increase in secretions and suctioning when she is off the vent.
We had trach care and trach change class today and I was able to change her trach for the first time. Kind of scary, but pretty easy to do. Her dad was here and had to change the trach too, so she got two back to back changes. Dad was more nervous than me and was slower too! LOL
The plan at this point is for Chrissy to go home on Monday, so we have a few days yet to get through. Two weeks in the hospital is a looooooonnnng time!
Emily has her sedated ABR (hearing) test in the morning. Her dad is bringing her up to the hospital in the morning for that.
Our dear friend (and Chrissy's nurse) Peggy is helping out with getting Stephen and my neice Marissa on the school bus in the morning. I am so thankful we have her to help us out! And did I mention how grateful I am she is Chrissy's nurse!! We are so fortunate to have her as a friend and as a nurse!
Thanks for all the prayers everyone!