Well, nothing happened today. Harlie's ENT doc didn't feel comfortable making any changes to her trach without doing a bronch first. I was afraid of that. The last bronch she had was last August when she had her lobectomies. That bronch was good in that her airway looked good with no scarring, granulomas or any evidence of aggressive suctioning. The bronch is done under anesthesia, so it requires another day trip up to DC. With my due date approaching fast (just 3 weeks away now!) he was able to get us in on Tuesday.
I definitely feel like we are flirting with disaster. The last thing I wanted to do was to be out of town (2 hours away if good traffic) for an entire day at 37 weeks pregnant. Granted, I will be right across the street from where I had Harlie, so it's not like we don't know the area. But still...
As much as I didn't want this bronch to have to happen, we simply have no choice. I am determined to get a PMV (speaking valve) on Harlie! I don't care what I have to do. It is so important to the function of her airway and swallowing, not to mention that hopefully it will get her understanding that she can make sound so we can make some progress in the speech department. Although I know that it won't be as simple as just putting the valve on and teaching her how to talk. I have a feeling we will struggle with her to keep the valve on. Since she will not wear an HME, it really wouldn't surprise me if she takes the PMV off, too. But, I am hoping that once she figures out she can hear herself, that will help motivate her to wear it. Clearly, we will have to cross that bridge later.
Unfortunately, this makes Harlie's 5th procedure under anesthesia in just 4 months!!! Add Murphy's surgery in and quite frankly, I am TIRED of hospitals!!!! Throw in all the pre-op AND follow-up appointments, not to mention the home therapies and it just gets overwhelming.
Monday should be fun. Harlie has to get a pre-op physical by her pediatrician (for the bronch on Tuesday) at 8:50am, then Murphy has a dentist appointment at 10:30, then Harlie has physical therapy at 11:30 and then speech therapy at 12:30. Ahhh, sounds relaxing, doesn't it?
Well, tomorrow the baby's furniture gets painted! Thankfully, our friends Susan and Paul are helping us out. Paul is a cabinet builder and has the necessary equipment so him and Tom are going to be working on it tomorrow. Hopefully Tom will be able to bring it all home on Sunday. I am so excited!
Well, that's it for tonight.
Take care,
Christy
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2 comments:
Hang in there, Christy. That sucks it couldn't all be done today - I know you were hoping for that. Hopefully you'll get great news on Tues, and things will go even better with the valve replacement than you dreamed of!
I love the new look of the blog!
Please just don't go into labor on tuesday...please!! I know everything will go fine and eventually Harlie will use the valve and understand why it is there and not pull it off like the HME..she is such a smart little lady..just give her the time and patience she needs..which you do all the time so why am I even saying that...good luck.
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