Just before falling sleep- not too sure about this... :(
Well, many of you have already heard my ranting on Facebook but I thought I would give the whole story here. Poor Gracie had a rough time of it on Saturday night. I thought we did a pretty good job explaining to her what would happen. We described it as a sleepover with Daddy (I was home with Ben as I am nursing and he won't take a bottle these days) where she would sleep in a "big bed" and wear "stickers". I mean, how else do you describe it to a two year old? We packed her favorite friends, blankets, stickers to put over the probes, bottles and even a favorite snack.
Everything started out okay. Ramsey was texting me updates and Gracie was very interested in the facility, the room, etc. They put a few probes on but wait until the patient falls asleep before adding everything. So Gracie was wired up and settled in for a bottle and some stories with Daddy. She got a little upset at this point and they gave me a call so she could talk to Mommy. Then Ramsey got her calmed down and finally she fell asleep.
Then the tech came in and added some probes and a nasal cannula. This was the kicker. Gracie kept pulling it out in her sleep and they kept coming in to readjust it. The last time the tech came in, Gracie opened her eyes to find a stranger putting something under her nose. As a medically traumatized child who once had an NG tube put down her nose on a regular basis, she FREAKED OUT. And who could blame her? Poor little girl..... Ramsey tried to calm and reassure her, but she was hysterical. Woken from a sound sleep in an unfamiliar place :( Ugh, it just kills me.... She was trembling so much that the tech checked her brain waves on the monitor to make sure that she wasn't having a seizure. Which she wasn't. But she was so upset that she just threw up everywhere. I mean ALL OVER everything. So Ramsey is yelling for help and flipping Gracie on her side so she doesn't aspirate puke through her trach.......ugh. He gets her as cleaned up as possible, but once a kid is that upset, it's over. And a kid with a trach needs a trach change, trach care, bath..... it's no quick fix. So home they came at 11:30pm where I had a bath waiting. Gracie seemed better but she kept talking about how she "choked in the big bed".
I called our ENT today to see what we do next. He cannot decannulate her without a conclusive study of some sort, which is totally understandable. But I REALLY hope there is an alternate option of some sort. I just don't see how we could expect to take Gracie back to this place (there aren't many that handle pediatric patients apparently) and have her go through this again. So I was told that he wants to see the report before recommending the next step. This takes a week to get as the sleep center has to have a pediatric pulmonologist read the report and give it to our ENT. This is frustrating to me but I get it. I get that he wasn't there and wants to see the official report. But she was only asleep for 30 minutes! I have no idea how much he can glean from this and it just pushes out the possibility of getting her trach out. And the clock is ticking as this needs to be done before RSV season in the fall.
So Ramsey was a rock star, as usual. Gracie was SO good, as usual. And I got really upset, as usual. Mama bear has her CLAWS out! I mean, how much can one little girl endure? She is just so awesome- so good and compliant and deals with so much that it is really hard for me to see her struggle with an experience like this. Case in point: how many 2 year olds do you know that wear their eye patch and glasses while giving themselves a breathing treatment with a nebulizer? I mean, really!
Everything started out okay. Ramsey was texting me updates and Gracie was very interested in the facility, the room, etc. They put a few probes on but wait until the patient falls asleep before adding everything. So Gracie was wired up and settled in for a bottle and some stories with Daddy. She got a little upset at this point and they gave me a call so she could talk to Mommy. Then Ramsey got her calmed down and finally she fell asleep.
Then the tech came in and added some probes and a nasal cannula. This was the kicker. Gracie kept pulling it out in her sleep and they kept coming in to readjust it. The last time the tech came in, Gracie opened her eyes to find a stranger putting something under her nose. As a medically traumatized child who once had an NG tube put down her nose on a regular basis, she FREAKED OUT. And who could blame her? Poor little girl..... Ramsey tried to calm and reassure her, but she was hysterical. Woken from a sound sleep in an unfamiliar place :( Ugh, it just kills me.... She was trembling so much that the tech checked her brain waves on the monitor to make sure that she wasn't having a seizure. Which she wasn't. But she was so upset that she just threw up everywhere. I mean ALL OVER everything. So Ramsey is yelling for help and flipping Gracie on her side so she doesn't aspirate puke through her trach.......ugh. He gets her as cleaned up as possible, but once a kid is that upset, it's over. And a kid with a trach needs a trach change, trach care, bath..... it's no quick fix. So home they came at 11:30pm where I had a bath waiting. Gracie seemed better but she kept talking about how she "choked in the big bed".
I called our ENT today to see what we do next. He cannot decannulate her without a conclusive study of some sort, which is totally understandable. But I REALLY hope there is an alternate option of some sort. I just don't see how we could expect to take Gracie back to this place (there aren't many that handle pediatric patients apparently) and have her go through this again. So I was told that he wants to see the report before recommending the next step. This takes a week to get as the sleep center has to have a pediatric pulmonologist read the report and give it to our ENT. This is frustrating to me but I get it. I get that he wasn't there and wants to see the official report. But she was only asleep for 30 minutes! I have no idea how much he can glean from this and it just pushes out the possibility of getting her trach out. And the clock is ticking as this needs to be done before RSV season in the fall.
So Ramsey was a rock star, as usual. Gracie was SO good, as usual. And I got really upset, as usual. Mama bear has her CLAWS out! I mean, how much can one little girl endure? She is just so awesome- so good and compliant and deals with so much that it is really hard for me to see her struggle with an experience like this. Case in point: how many 2 year olds do you know that wear their eye patch and glasses while giving themselves a breathing treatment with a nebulizer? I mean, really!
Our amazing Gracie with her new special Tinkerbell :)