What a busy day. We are all exhausted. Lucy made a major step in her recovery and is now breathing all by herself. She failed her first study to see if she could come off the ventilator due to high Carbon dioxide levels in her blood. Eventually, she was ready and they pulled the breathing tube. She's currently on vapotherm, which is a humidified nasal cannula. It's providing oxygen through her nose, while she's in the transition of breathing on her own. She still has three chest tubes and an arterial line, so she will need to have those taken out before we can actually hold her.
Lucy is still on a very low dosage of sedative, Versed. She had also been under a heavy dosage of Fentanyl, so it's very likely she will begin to show withdraw symptoms and need to be put on Methadone.
We also received so many wonderful care packages today. We're very lucky to have such thoughtful and caring friends. I can't express how much it helps to make our stay here a little more enjoyable. I'll admit that hospital life is really difficult, especially after being away from home. But it's nothing even comparable to our first hospital stay when Lucy was first born, which was 75 days.
Currently, Lucy is still a little sedated and will continue to wake up more overnight as the medication begins to slowly wear off. She'll be uncomfortable at times, as she's still sore from her surgery. Overall, it was a great day and we're one step closer to going home.
Happy Belated Down Syndrome Awareness Month
1 year ago
6 comments:
I work in the PICU at Riley (as an RT) and although I have not taken care of Lucy, I have heard how adorable she is. And after seeing her pics, I would have to agree. I was going to stop in last weekend and introduce myself, but was just far too busy at the other end of the unit. I too have a child with Down Syndrome, my son Noah, who is 3. He also had OHS at Riley in 2007, performed by Dr Turrentine, so I get to see things from both perspectives. I will try to stop by and see you this coming weekend. Congrats for Lucy coming off the vent!
Oh my goodness, I just went back to get a little history about your blog and had no idea little Lucy was a preemie! Such a fighter she is!!! She's been through a lot in her short life but you can tell this little girl is strong! Lucy is in my prayers-such an adorable little girl you have!!
Your daughter is adorable! I love, love, love your sense of humor with her in the hospital. I bet she is quite popular with the nurses :)!!!
Hi there, just found your blog. Yeah for extubation. She is a cutie pie.
thanks for these updates. forgot to check here - been following twitter.
hope it doesn't feel too odd that someone who came to 'know' you through sween's twitter posts is glad these mornings to see that lucy's done well the night before
thoughts and positive energy with you all
Congratulations on precious Lucy coming off of the vent! Thanks for sharing! Lucy is such a tough little cookie and too cute to boot!You all will be in our thoughts and prayers!
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