Kyle still has something seriously wrong with him.
However, he amazes me. He is doing well (supporting his head) with his halo off. He has 2 neck collars and 1 neck collar/brace (that insurance does not cover, grrr) but Kyle doesn't like them. Keep in mind, Kyle has Klippel Feil Syndrome too so his neck is short, and apparently you need a neck for such devices because none of them truly fit Kyle.
Anyway, Kyle is just happy to be able to put his head on a pillow. However, Kyle still vomits every day. His voice is still muffled and hoarse. He still pauses in his breathing for long periods of time, consistently, while 'trying' to sleep. I've mentioned this to his neurosurgeons several times throughout the months but nothing came of my concern. So I got fed up and emailed his regular doctor at 1 o'clock in the morning on October 10th. At 8am his pediatrician told me to come see him that afternoon. At that appointment, Kyle's doctor scheduled Kyle for a sleep study to check for sleep apnea; also referred Kyle to a Head and Neck Surgeon to check out his throat.
October 12th, I took Kyle to see the Head and Neck Surgeon who used a scope down Kyle's nose & throat to see his voice box. He said Kyle's voice box cartilage is severely swollen and weak. So swollen that it is obstructive and flaps when Kyle breathes in and out. He believes stomach acid (reflux) has inflamed this area. He's not sure why the cartilage is as weak as it is but he suggested to start with medicines to reduce Kyle's stomach acid (which helps with his vomiting issue). If his voice box does not heal then Kyle will need surgery BUT the doctor said it would be an extremely dangerous and difficult surgery because of Kyle's restricted airway.
The Head and Neck Surgeon then told us he will review the sleep study, which is scheduled for October 16th, and let us know if Kyle will need a CPAP or not.
Should know more by the end of this week.
Sad Ending to a New Beginning
11 years ago
3 comments:
Excellent information provide for us.....................thanks for sharing
cpap machines Toronto
Benjamin's Mom
Hi there! I just read this blog for the first time. My two year old son has Klippel-Feil as well. Benjamin had sleep studies that showed over 500 events per night. One day he stopped breathing, but (through the help of others) we were able to resuscitate him. It was then that we discovered through a bronchospy and a CT scan that Ben had tracheomalacia (soft floppy airway) then we disvovered that the artery from his heart (inominate artery) was crossing over his trachea and everytime he grew, he was slowly choking himself. This is rare. We were then able to improve his condition significantly by having surgery that stitched his artery from his heart into his chest wall. One of the first things I discovered (about 3 weeks post-op) was that Benjamin no longer had a quiet muffled voice...he was loud!!! Good luck to you. Please contact me if you have any questions.
Karen karendgartner@hotmail.com
Hi Benjamin's Mom! Thank you for sharing your story. It truly helps me and those who are looking for answers.
I was going to post an update on Kyle sometime today but in the meantime, we found out Kyle's brainstem is still compressed causing more neurological issues. He does have tracheomalacia too and the left side is paralyzed.
Please continue to follow Kyle's blog and let me know if you have a blog for Benjamin.
May Benjamin continue to grow healthy and strong!
Thank you so much!!
Post a Comment