We went ahead with the tracheotomy as planned on the 26th. Sorry I didn't update sooner, but I haven't been at a real computer and blogger doesn't seem to like mobile devices.
On our way to the hospital:
She wasn't too happy that morning. I had explained to her where we were going and why, plus I think she was picking up on my anxiety. She got a little smiley, strolling through the halls of the hospital, but as soon as we got her gown on her she went into "shut down mode". This is what I call it when she goes into a deep sleep in a stressful situation, even if she has no reason to be sleepy at all. She woke up a few minutes before the took her back so I was able to kiss her and tell her to "be good". I was trying not to lose it in front of her, but it was really hard. My doctor did give me a little something for anxiety so that helped a bit.
The surgery mostly went off without a hitch. They accidentally tore her trachea a tiny bit and had to put in an stitch to hold it closed, but all in all, it was ok. She did fine with the anesthesia.
Still sleepy from the anesthesia after she was moved to the PICU:
Maybe an hour post-op she was already waking up and giving us huge grins!
She required the vent to breathe for the first day, but once they started the weaning process, she came off of it quickly, by 10pm the next night.
She was very swollen on Tuesday. They said it was just from excess fluids from her IV, but boy, did it look uncomfortable! It didn't mess with her mood much though, or her ability to come off the vent. No pictures of puffy Charlie, sorry! I just couldn't do that to her!
She ended up with a trach infection, which is not too uncommon after a new trach placement. But she has to be on antibiotics for a while and she's been hacking up some nasty stuff.
Charlie never did seem to be in any pain or discomfort. She never so much as pouted, let alone cried. She was off of all her extra pain meds by Wednesday morning. The only thing that ever seemed to bother her was that she couldn't hear her own voice. I forgot to mention that part to her. Whoops. :-( I assured her that she would be able to hear her own voice soon. It didn't stop her from trying with all her might. I could tell from her facial expressions that she was yelling as loudly as she could!
Thursday she didn't feel so hot so I brought her a dragonfly balloon. She just acted SO tired and worn out. Probably tired herself out from all the yelling she did. LOL She did great breathing all day Wednesday, but it was like she had just run out of her usual spunk on Thursday. She dozed a lot, off and on, and her sats just kind of hung a little low. I knew it was probably nothing to worry about though.
I did get a couple of smiles out of her though, and in this one, you can see her front tooth is super loose, it's crooked! The dentists came in and said they could go ahead and pull it for us, so we decided to do it while she was sedated for her next procedure, a follow-up bronch and a trach change.
They had to go back in and do another bronch to check out that little tear back there. It healed just fine though and she got her trach changed out. The even let me come back into the OR in a bunny suit to watch it! I wish I had a picture of me in that thing!
Waking up after the anesthesia wore off....see my missing tooth!?
Today we went back and she was happy and more awake again. Her sats were staying up better and she's going longer between suctioning. She's managing to cough so hard she can sometimes clear her trach entirely, and all I have to do is wipe it away, not even suction!
The inflammation in her trachea is going down so now she can push air past her trach, which means we got to hear her voice today! Very exciting for all of us, especially her!
So now all we have to do is get her home, which means I need to stay 24 hours and prove I can handle all of her care. So far it's no big deal. I've already been suctioning her for days. The only thing I haven't done is changed her trach or trach ties, but I did get to practice on a baby doll.
So far I'm doing ok with the decision. I can't say yet whether or not it will be a huge help long term, but at least she seems to be ok with it. I really thought she'd be kind of pissed that we put her through all of that when she'd been doing so well, health wise! But either she doesn't really care, or she feels better with it in, because she's as happy as a clam.
She'll be coming home on oxygen and the cool mist. I'll be demanding a vent so we have the option of using more breathing support if needed, to control the dysautonomia. I'd like to be able to get her off the oxycodone! Even with the extra equipment, not a lot is going to change. She won't need to be hooked up to the cool mist all day (this is something she will wean off of over a period of a few weeks, until she's on it only at night) and over time we might be able to get her off the oxygen during the day too, maybe not all the time, but she could get breaks.
And Adrian, looking way too grown-up for his own good:
He hasn't been able to see Charlie yet, since they don't allow kids under 12 in the PICU, but he'll see her soon enough. He doesn't really understand about the trach, just that it's a tube that will help her breathe. Hopefully he adjusts quickly too.
On our way to the hospital:
She wasn't too happy that morning. I had explained to her where we were going and why, plus I think she was picking up on my anxiety. She got a little smiley, strolling through the halls of the hospital, but as soon as we got her gown on her she went into "shut down mode". This is what I call it when she goes into a deep sleep in a stressful situation, even if she has no reason to be sleepy at all. She woke up a few minutes before the took her back so I was able to kiss her and tell her to "be good". I was trying not to lose it in front of her, but it was really hard. My doctor did give me a little something for anxiety so that helped a bit.The surgery mostly went off without a hitch. They accidentally tore her trachea a tiny bit and had to put in an stitch to hold it closed, but all in all, it was ok. She did fine with the anesthesia.
Still sleepy from the anesthesia after she was moved to the PICU:
Maybe an hour post-op she was already waking up and giving us huge grins!
She required the vent to breathe for the first day, but once they started the weaning process, she came off of it quickly, by 10pm the next night.
She was very swollen on Tuesday. They said it was just from excess fluids from her IV, but boy, did it look uncomfortable! It didn't mess with her mood much though, or her ability to come off the vent. No pictures of puffy Charlie, sorry! I just couldn't do that to her!
She ended up with a trach infection, which is not too uncommon after a new trach placement. But she has to be on antibiotics for a while and she's been hacking up some nasty stuff.
Charlie never did seem to be in any pain or discomfort. She never so much as pouted, let alone cried. She was off of all her extra pain meds by Wednesday morning. The only thing that ever seemed to bother her was that she couldn't hear her own voice. I forgot to mention that part to her. Whoops. :-( I assured her that she would be able to hear her own voice soon. It didn't stop her from trying with all her might. I could tell from her facial expressions that she was yelling as loudly as she could!
Thursday she didn't feel so hot so I brought her a dragonfly balloon. She just acted SO tired and worn out. Probably tired herself out from all the yelling she did. LOL She did great breathing all day Wednesday, but it was like she had just run out of her usual spunk on Thursday. She dozed a lot, off and on, and her sats just kind of hung a little low. I knew it was probably nothing to worry about though.
I did get a couple of smiles out of her though, and in this one, you can see her front tooth is super loose, it's crooked! The dentists came in and said they could go ahead and pull it for us, so we decided to do it while she was sedated for her next procedure, a follow-up bronch and a trach change.
They had to go back in and do another bronch to check out that little tear back there. It healed just fine though and she got her trach changed out. The even let me come back into the OR in a bunny suit to watch it! I wish I had a picture of me in that thing!
Waking up after the anesthesia wore off....see my missing tooth!?
Today we went back and she was happy and more awake again. Her sats were staying up better and she's going longer between suctioning. She's managing to cough so hard she can sometimes clear her trach entirely, and all I have to do is wipe it away, not even suction!
The inflammation in her trachea is going down so now she can push air past her trach, which means we got to hear her voice today! Very exciting for all of us, especially her!
So now all we have to do is get her home, which means I need to stay 24 hours and prove I can handle all of her care. So far it's no big deal. I've already been suctioning her for days. The only thing I haven't done is changed her trach or trach ties, but I did get to practice on a baby doll.
So far I'm doing ok with the decision. I can't say yet whether or not it will be a huge help long term, but at least she seems to be ok with it. I really thought she'd be kind of pissed that we put her through all of that when she'd been doing so well, health wise! But either she doesn't really care, or she feels better with it in, because she's as happy as a clam.
She'll be coming home on oxygen and the cool mist. I'll be demanding a vent so we have the option of using more breathing support if needed, to control the dysautonomia. I'd like to be able to get her off the oxycodone! Even with the extra equipment, not a lot is going to change. She won't need to be hooked up to the cool mist all day (this is something she will wean off of over a period of a few weeks, until she's on it only at night) and over time we might be able to get her off the oxygen during the day too, maybe not all the time, but she could get breaks.
And Adrian, looking way too grown-up for his own good:
He hasn't been able to see Charlie yet, since they don't allow kids under 12 in the PICU, but he'll see her soon enough. He doesn't really understand about the trach, just that it's a tube that will help her breathe. Hopefully he adjusts quickly too.
2 comments:
Sounds like you've had quite a challenging time. I really hope this helps Charlie. I'm so glad to see her beautiful smiles. Hope you're doing well too Shauna. Lots of hugs to all three of you!!!!
I just can't get over how much she looks like Adrian... and I'm so glad that this helps her breathing, will help you do more of her care at home, and still let us easily see that beautiful smile :)
In fact, I'm sure Adrian will get used to it quickly because you can easily see she's still herself because of that smile.
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