Trach decan postponed due to lots of stridor over night. Makenna has a high pitched stridor with lots of chest pulling when she falls into a deep sleep. This is a sign that there is something not right with her upper airway. She still had some minor swelling from surgery the other day but the Dr. Did not think the was the direct issue.
The plan is to schedule a sleep study two weeks from now and to have it done with the fenestrated trach capped off so she has to use her airway. We are hoping this will give us a clearer picture of what is going on with her airway in her sleep. The good news is she did VERY well awake with her trach capped. Dr. seems to think her problems are low tone and small jaw when she falls asleep and when she gets really relaxed her tongue falls back into her airway. Possible solution, jaw (mandibular) distraction. This is a major surgery so we are not jumping on the decision right away. We want to be sure that this is exactly the issue before we do anything.
I am extremely bummed about all of this. I was hoping just once that something would go easy for Makenna. I also am at the point where I want to see the trach gone. We are not at the point where the Dr. is going to say she needs the trach forever but being that it is upper airway issues it is not going to be an easy road to get trach free. I also have to prepare myself for the possibility of it never coming out. As much as I prepare myself for news like that it will still be a horrid day a day just as bad a the day we got her chromosome deletion diagnosed. I have my down days but I will not let this ruin me. I have to appreciate the fact that the trach as enabled me to do sooo much with Makenna. The trach has given Makenna life and days filled with fun and laughter. Still though I can never see myself able to stop wondering what it would be like without it in our lives.
Right now Makenna is having an overnight EEG performed. It is looking for electrical seizures basically seizures that happen internally with no eternal evidence. These seizures affect language development and other developmental milestones.
The good news for the day would be her skin biopsy results came back negative for pyruvate mitochondrial disorder. Yay! That is super good news but somewhat shadowed by the unsuccessful trach removal. Oh and Makenna is a whole 16 lbs now. Hardest 16 lbs I have ever seen anyone gain.
More news to come soon I am sure. Thanks for the support and following of Miss Makenna. I am sure she appreciates it more then we know.
- Posted using BlogPress from my iPhone
Hugs.
ReplyDeleteAs I read your words, I have felt those very feelings you are feeling.
I am almost 5 years into this unexpected, incredible, happy, sorrowful, journey and there are days that I can still get sucker punched.
I will promise you that it will get easier, the pain won't visit as frequent, it will only tap you on your shoulder on occasion.
I am so happy you commented on my blog so I could follow you back her and meet your beautiful Makenna Rose, and if that isn't a reason to smile then I don't know what is.
xo
I follow your blog frequently and think about you and Makenna often. I look up to you! You are amazing and Makenna is lucky to have you as her mama. I have my down days too but just know that the love she has for you is greater than any anxiety or worry. Good luck on the trach situation and I am so glad you are willing to share your experience with a 4q deletion because it really helps me too.
ReplyDeleteElaine
Mommy to Walt
4q34.1q34.3