Ellie's mom here today.....
Just wanted to let you all know how I feel. I hate nasal stents with a passion. I would really like to know how many of you cleft families had to deal with them and for how long. I don't know if I can make it. Thank you, Allison for your comment about wrapping up Reid is some blanket of some sort to get the stints in. We did that. It is working better...but it is such an ordeal. Reid screams through the whole process which takes a good 30 minutes-usually in the wee hours of the morning when the stint has pulled out. Of course, we are trying to keep him calm (which doesn't happen) because Ellie is asleep nearby. It is emotionally tolling. I am physically exhausted and emotionally drained, as is Brian. Then, I turn around and do the same thing again and again and again...day in and out. The NAM was a breeze compared to this. I thought that our hard part was over with (Nam, surgery) but I have come to find out, that I am very wrong. This is the hard part. So, can you cleft families help me out and just let me know how many of you dealt with stents. We are to have size 5 in Reid's nose for 3 months and then a larger size for 3 additional months. I can't do it. I just can't. I actually am waiting for our surgeon's office to call me back. I just want to tell them what we are dealing with (no sleep, crying baby all the time, total discomfort) and see what they tell me. I will keep you posted...and thanks for all your help. I didn't think nasal stents were used with too many of your kiddos out there....and I just want to see. You are all so wonderful to us. Thanks for keeping us in your thoughts. It's rough right now....and I keep telling myself that it WILL pass someday.
Much love....
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Mommy and me having cuddle time at Hocking Hills.
Told ya, my hair can be wild! And you thought I was kidding!
Hmmm, Blue's Brother's perhaps?
6 comments:
Hi Janeen,
I'm glad the blanket is helping, and hoping you were able to take up one of those offers from your friends so you could take a nap. Ever since they wrapped Abby up in order to take out her stitches, I'll use this trick to give medicine or put Orajel on her gums. If I were you, I would go to i-village and create a profile (if you don't already have one) and search for the cleft lip/palate board. You can post a message asking about the nasal stints, I know a few of the moms over there have had to deal with them. Hopefully you can get some answers!
Allison
I wish I could help you! I am so sorry that he is not sleeping. Hang in there mom! Please call if I can help you any this week.
Lots of hugs!
Beth Reusser
No nasal stints here. The plastic surgeon said the nose grows and changes so much that it is not worth the time, effort, and tears to keep them in. I was really concerned and Adalynn's nostril is flat on the cleft side-so I blamed the plastic surgeon for not using them, but now after hearing all these horror stories, I feel blessed to not use them.
Our surgeon said he would work with her nose right before she goes to school (between 4-6 yrs old). She will be bigger and it will be easier. Plus, he likes to use ear cartilege to rebuild the nose and it is stronger then.
Best of luck and sorry I have no advice!
Hi
Abigails Grandma here... I am in no way an expert..but I am a nurse..and we often 'baby burrito' the kids to get things done, so keep using the blanket method...and also we used a small oral solution, well known to the medical community when doing procedures called 'sweet ease' that helps calm the child..it is non narcotic and really does work...ask your MD for it....We are all so new to this and find everyone's experience so precious, informative and valuable...even the 'tough times' Hang in there....and just know you are doing a great job, and take it a moment at a time.. we love your blog and pray the best for your family
We did not use nasal stents and can't imagine it as it was such a relief once the NAM was over. I would like to see if the results are truly that much better with using them. My surgeon is doing the same as the previous post. My son's nose is flat and wide right now, but the surgeon is going to fix it when he's about 4.
Janeen, so sorry to hear you are having such a hard time. I will keep you all in prayer as you go through this difficule period. I'll be in touch when we get home from vacation to see if there is anything I can do for you.
God Bless
Tina
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