Wednesday we're headed to UNC. We have a swallow study at 10am, nutrition appointment at 12pm, and then 3 stage pre-op session for Mac's bronch at 1:15. Then we go back on Friday for a follow up with pulmonology about Mackenzie's sleep study. I'm not looking forward to any of, especially Friday. I'm nervous that she'll go back on a rate. Hopefully I'm worrying for nothing!
Today we had a follow up with the pediatrician. Friday we took Mackenzie in for suspected tracheitis. Her secretions were pretty yellow (beige with Xoponex treatments) and she was on and off O2, although not significantly so. Our treatment over the weekend was oral antibiotics and continuance of the Xoponex nebs every 4hrs until we could get the result from her tracheal aspirit. The aspirit grew two types of bacteria, both that she's had before but hasn't grown in the past 4 aspirits. One is klebsiella, a pacteria commonly found in the bowel. She actually had klebsiella pneumonia back in November (when she went back on the vent the 1st time), and we thougth she was colonized with it because she grew it after every aspirit. The fact that we had made it through 4 aspirits and never grew it makes me think that this is a more recent issue... meaning Mackenzie is refluxing and aspirating. The second is pseudomonas which is pretty common in trached kids on a vent. It's a bacteria that grows in water. The current plan is to continue the oral antibiotics and add an inhaled antibiotic called tobramycin. She'll get the tobi nebs twice a day for 14 days. If she gets worse, then she'll need to be admitted to the PICU for IV antibiotics. I'm not a fan of that option, so hopefully the tobi will do its job! We've never used it before but I've heard it works beautifully.
I should probably start going through Mackenzie's Go Bag and restocking it. Arg. I wish there was a magically little fairy that could do that for me. :oD
Niff & Andy
We are the parents of Mackenzie, a former 26 week preemie who was born September 13 of 2008, weighing 1 pound 11.5 ounces. After being diagnosed with a subglottic hemangioma three months later, Mackenzie was trached and has since proven she is anything but ordinary. Mac also has laryngomalacia, chronic lung disease (bronchopulmonary dysplasia or BPD), hypertension, biventricular hypertrophy, gastroesophageal reflux disease (GERD), and sports a MicKey Button for enteral feedings. She keeps us on our toes and ensures Mommy and Daddy remember who’s really in charge.
Actual Age
Adjusted Age
Pose it... pose it! Click!
Mackenzie loving being home.
Daddy, I think you missed my mouth.
Can I have more of that sweet stuff? I promise I'll be good!
Mackenzie, you are an inspiration to us all.
Shhh little one! Santa won't come while you're awake.
We love you more than anything, Mac.
Daddy holding Mackenzie's hand. Hang in there little sweetie. We love you!
Noteworthy Sites
Followers
3 comments:
I hope that Wed appointments go well...sounds like you have a busy week!
Tobi does work great...and the magic fairy is your nurse. :) I made a list of what goes in our to go bag for the nurse to know how it needs to be restocked but I haven't let her do it just yet...still use to doing it myself just to make sure.
Lacy - I LOVE my day nurse. She's like part of the family and I don't know what I'd do without her... but I dont' think I'd ever let her restock the go bag. There's just too much that could go wrong and I want to make sure it's stocked correctly. It's similar to baths and trach care... I don't let them do that either.
Post a Comment