I know I haven't posted anything in a while about how Analeigh is doing so I figured I'd take a moment to do just that. Since my last post, things have been going fairly well. She had an appointment with her pulmonologist on the 15th and as a result of some thick secretions that had a foul odor, she was put back on the Tobramycin nebulizer treatments for 2 weeks.
I hate when she has to have that stuff because it gets her heart rate up and she seems to be more agitated. It doesn't help that this past Monday, my M-Th day nurse realized that someone had been giving her twice the prescribed dose for a 2 day period (which was a total of 6 doses). Instead of getting the 80mg 3x per day, she was given 160mg 3x per day... much too high of a dose! It was an honest mistake, I'm sure, because the pharmacy misprinted the label saying the vials were 40mg vials and she was to be given 2 of them every 8 hours. In reality, they were 80mg vials (2ml per vial) and she only needed 1 vial of the Tobramycin mixed with 1 vial of Xopenex every 8 hours. Anyway, to make a long story short.. it was making her face all red and splotchy and her breathing was crazy. We decided to back off of it for a couple of days because an overdose of Tobramycin can make the lungs feel as if they are burning (which is probably why she was so fussy and red). That seemed to do the trick and she's back to her normal self.
She saw the ENT on the 19th... he confirmed the new Bivona trach is the appropriate size and everything looked good around the trach site. She was supposed to see her pediatrician tomorrow (for those 15 month shots she never got), but because she's still on the Tobramycin, they moved it to Sept 12.
Physical therapy seems to be helping with the stiffness she developed in her legs during her hospital stays back in July. She's tolerating them being bound together more often (which keeps her from getting too contracted in that butterfly position). She seems to really enjoy being in the prone position (on her stomach) and it amazes me every time I see her that way because she's getting so long now! She looks so small to me still sometimes until they stretch her out and then all I can say is "WOW!"
That's pretty much all that's gone on this last month... things are pretty calm (which we are grateful for). Thanks to all for your continued prayers and support. She still needs a miracle! :)
On another note, I'm getting so close to Jayden's arrival now... 8 more days!! My scheduled C-Section is on September 6th @ 39w2d. I'm so beyond ready! At the same time though, I have to admit that I'm starting to feel more and more nervous. The closer we get, the more real it is to me that I will soon have a newborn in the house who actually cries when he's hungry, sleepy or feels bad. I didn't get much of that with Analeigh. Her first 6 months were spent in the NICU and I never had to wake up for scheduled feedings in the middle of the night. When she first came home, I hardly went to bed before 2am, so I did get to experience a little bit of that but not on the scale that I'm about to with Jayden. It's kind of like becoming a mommy for the very first time.
Sometimes it's hard for me to remember Analeigh when she was really small... she always had wires everywhere and tape all over her face. Knowing that we won't have to go through that again makes me so relieved but at the same time, I realize that his care is going to be so much different from hers. I had a lot of help with her but with Jayden, it will all be up to me. Every feeding, poopy diaper, bath, etc. will be all mine. I know I'm in for a crazy ride! lol
Well folks, that's really all I have to share right now... just wanted to let everyone in on Analeigh's last month (that has thankfully been spent OUTSIDE of the hospital) and to remind you all to keep praying! :)
I hate when she has to have that stuff because it gets her heart rate up and she seems to be more agitated. It doesn't help that this past Monday, my M-Th day nurse realized that someone had been giving her twice the prescribed dose for a 2 day period (which was a total of 6 doses). Instead of getting the 80mg 3x per day, she was given 160mg 3x per day... much too high of a dose! It was an honest mistake, I'm sure, because the pharmacy misprinted the label saying the vials were 40mg vials and she was to be given 2 of them every 8 hours. In reality, they were 80mg vials (2ml per vial) and she only needed 1 vial of the Tobramycin mixed with 1 vial of Xopenex every 8 hours. Anyway, to make a long story short.. it was making her face all red and splotchy and her breathing was crazy. We decided to back off of it for a couple of days because an overdose of Tobramycin can make the lungs feel as if they are burning (which is probably why she was so fussy and red). That seemed to do the trick and she's back to her normal self.
She saw the ENT on the 19th... he confirmed the new Bivona trach is the appropriate size and everything looked good around the trach site. She was supposed to see her pediatrician tomorrow (for those 15 month shots she never got), but because she's still on the Tobramycin, they moved it to Sept 12.
Physical therapy seems to be helping with the stiffness she developed in her legs during her hospital stays back in July. She's tolerating them being bound together more often (which keeps her from getting too contracted in that butterfly position). She seems to really enjoy being in the prone position (on her stomach) and it amazes me every time I see her that way because she's getting so long now! She looks so small to me still sometimes until they stretch her out and then all I can say is "WOW!"
That's pretty much all that's gone on this last month... things are pretty calm (which we are grateful for). Thanks to all for your continued prayers and support. She still needs a miracle! :)
On another note, I'm getting so close to Jayden's arrival now... 8 more days!! My scheduled C-Section is on September 6th @ 39w2d. I'm so beyond ready! At the same time though, I have to admit that I'm starting to feel more and more nervous. The closer we get, the more real it is to me that I will soon have a newborn in the house who actually cries when he's hungry, sleepy or feels bad. I didn't get much of that with Analeigh. Her first 6 months were spent in the NICU and I never had to wake up for scheduled feedings in the middle of the night. When she first came home, I hardly went to bed before 2am, so I did get to experience a little bit of that but not on the scale that I'm about to with Jayden. It's kind of like becoming a mommy for the very first time.
Sometimes it's hard for me to remember Analeigh when she was really small... she always had wires everywhere and tape all over her face. Knowing that we won't have to go through that again makes me so relieved but at the same time, I realize that his care is going to be so much different from hers. I had a lot of help with her but with Jayden, it will all be up to me. Every feeding, poopy diaper, bath, etc. will be all mine. I know I'm in for a crazy ride! lol
Well folks, that's really all I have to share right now... just wanted to let everyone in on Analeigh's last month (that has thankfully been spent OUTSIDE of the hospital) and to remind you all to keep praying! :)
