Rescheduled again for Mon. Dec. 8th. This time due to hospital PICU space. (third time's the charm I hope!)
Rescheduled for Mon. Dec. 1st.
Nevermind - This surgery did not happen today. Insurance issues are mostly to blame. Hopefully we can reschedule it for next Mon???
Cicily will go in for surgery on November 17th to remove a granuloma that has grown in her trachea. A granuloma is a little ball of scar tissue. In this case, it's caused by the trach irritating the tissue around it and Dr. Mancuso will simply cut and cauterize it right off. He said it's quite straight forward. Dr. Mancuso will also perform another laryngoscopy and then we'll proceed one of 3 ways:
1. Cicily's airway will appear adequate and she will have her trach capped in the PICU overnight to see how she tolerates breathing without a trach in all different circumstances.
2 . Cicily's airway will still appear too small from the laryngoscopy and her trach will still be necessary and we'll come home.
3. Cicily's tonsils will be removed to create a larger airway (and get them out of the way so they cannot cause future trouble) and he'll see that her airway is adequate enough to cap her trach for a decannulation trial at a later date when she's recovered from her tonsilectomy (I'm assuming January).
We're hoping for scenario #3, eventhough it means she'd still have her trach until January at the soonest and till she's much older at the latest. I'm nervous about Cicily transitioning from a trach to no trach during the sick winter months anyway. I will update on the 17th or 19th!
6 comments:
I thought option 1 sounded great. But if you want 3 then that's the right one so we'll pray for 3.
I can't believe Cicily could start being capped and even decannulated so soon!!! How exciting and scary at the same time - it's crazy how comfortable and even attached we can become to something we were so terrified of when they first got them! Our ENT won't decannulate during flu season - I think they would just leave her capped through the winter and decannulate in the spring. At this point, I want to keep Faith's trach as long as possible to get through other surgeries in the next couple years.
Jana Lynn! This is Camille Hammond, from our BYU teaching group. Janica's sister. Janica just found your blog, and told me to look it up. I have a daughter who was born with a very rare chromosome abnormality called Ring Chromosome 18. We just started a blog at crhammond.blogspot.com. We actually just came home from a hospital stay with asthma. Emily's syndrome affects her both congnativly and physically, but she is a very sweet spirit and we love her! She's had 4 surgeries-open heart, a nissen/GTube, tonsils/adnoids removed, and hip surgery. She was in a body cast for 5 weeks while I was pregnant! Emily also has very narrow ear canals, and wears a bone conduction hearing aid. Your little girl is so beautiful. I'd love to talk sometime! We have a cousin who has had very similar surgeries to Cicily's. She's 10 now.
Hi Janalyn,
I thought I had just added a comment, but it didn't show up, so I will try again. But if you get more than one from me, I'm sorry! I just found your blog, your family is so beautiful. I just saw that Camille wrote you, she said the same things I was going to! (about her daughter and our cousin) I hope so much that Cicily's surgery goes well, we will keep her in our prayers. It is so good to see you and your family.
Luv,
Janica
Let me know what we can do for you when the surgery date gets a bit closer. we love you guys!
Thinking of you all today. Hope everything is going perfectly.
Robin
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