Wednesday, March 4, 2009

Second Opinions

Second Opinions Rock!! M2 had his Bronch and DL with Dr Cotton, ENT Cincinnati today. Although his vocal cords are still paralyzed he has given us hope!! I know I still haven’t told his NICU story, but you can read his birth story here. He was born with Bi Lateral Vocal Cord Paralyzation. Which basically means both his vocal cords are paralyzed in the closed position, making his airway very small and unstable. Apparently newborns usually have an airway that is 8 mm wide, his was 1mm.

The ENT Drs and the Neonatal Drs told us he would never be able to breathe on his own, and he did. Then they told us he would never be able to keep his oxygen stats up without oxygen, and he did. Then they told us he probably won’t be able to eat orally. And he can. So they put him in a wait and see mode and said sometimes the vocal cords are paralyzed during birth and he might gain movement in them. So we waited for 5 weeks, and they never moved. We were told we couldn’t take him home with out a trach. So he got a trach and came home. The trach isn't that big of a deal comparatively speaking but, he can't be left alone, he can't be left with anyone other than, me, Hubby, my mom, or an RN. That means no Sunday School, Preschool, or School unless we are in the same room with him. He can't swim, play in the sand, or play any kind of sports, and no rough-houseing. He can't be around aerosol or dust. He basically has an open hole into his lungs so we have to be really careful with sickness, germs and anything else in the air, (ie dirt, grass, smoke etc). RSV could easliy kill him, he has been getting the RSV shots.


Oh yea, and he can't make noise. Seriously, no noise, no crying, no laughing, no talking. No Noise. Since he has a trach the air that would come out of his mouth making him able to talk comes out his trach. No air in his upper airway means no noise. Have you ever seen a baby that can't cry? I mean I know at some point we have all wished for silence when a baby is crying, but believe me, it's not really as good as it sounds. It's kinda weird.

His ENT DR in Cbus said there was nothing we could do other than wait to see if his cords would start moving. He said he will check every 6 months and when they move he will get his trach out. If they don’t move, he will always have a trach. No other options. That wasn’t good enough for us, so we did our research and that landed us in Cincinnati with Dr Cotton. We have heard some of his miracle stories. We even know a Dr Cotton ‘graduate’, and those of you who follow Kayleigh’s blog may remember where her ENT Dr consulted Dr Cotton before she got her trach. So needless to say we were ecstatic when we got the call to come see him. We were even more ecstatic after the Bronch and DL when he told us there is a surgery that can be performed to help M2. It won’t actually ‘fix’ his vocal cords but it will let him lead a ‘normal’ life without his trach!!! WE ARE SO EXCITED!!!! I can't stop smiling, or crying. This has been one of the best days we’ve had in the last 11 months.

M2 has to go back in 4 months for the same procedure that he had today, Bronch and DL, if there are no changes to his vocal cords Dr Cotton is going to basically cut one of his vocal cords and reattach it to the side of M2’s throat. That way he will have a stable and larger airway and can get his trach out!!! Dr. Cotton said he will be giving up part of his voice, but he doesn’t really have a voice with his trach anyway. He told us 'He will never be an Opera Singer or a Marathon Runner, but he will be able to talk and play soccer' He can't do any of that now. Dr Cotton said he will have about 80% of a voice. I'm good with that!! We have a friend who has a preemie who is now 16, she can't yell, because she was intubated for so long, but she can talk, and has a normal life. I just can't wait for this surgery. There is finally an end in site.


The Lord sure has tested us this past year, I think we are all stronger because of it, but we are ready to close the books on the trach and move on!!

We are all just sooooo happy, relieved and excited.

11 comments:

Caitlin said...

YAHHOOOO! That is FABULOUS news! I am so happy for all of you! You will have to post a video of his little voice when it comes! :)

Cammie said...

that is awesome news!!! Wow!! I am so happy for you and your family!

T Rex Mom said...

I am so glad for you - such wonderful news. You must be just thrilled. I am somewhat relate - my little guy has asthma. A chronic medical condition can be very scary and trying. I hope the good news keeps coming.

Aileigh said...

That is awesome! Really... I am soooo happy for you! :) I can't to hear the rest of the story... :P

Sturgmom said...

AWESOME news!! Praise the Lord! I'm so excited for all of you!

Melissa said...

I thought about you this morning. What wonderful news! I am so happy for you!

Kelley with Amy's Angels said...

What wonderful news! I'm thrilled that you have been given options!!

Please continue to keep us posted!

Katie said...

Stopping in from SITS. What an amazing story! Your kids are adorable. Our kids are about the same age--I have a 3 year old and a16 month old. Happy Almost Friday!

KC Mom said...

Your story is amazing...I had never heard of this happening to a baby before. I'm so glad you've found someone who can help you. What a blessing you went looking! Thanks for visiting my blog today!

TuTu's Bliss said...

That is wonderful news. Our little wouldn't speak for the longest time (she could, but wouldn't) She learned sign and loved every minute of it. Signing time is still our entire family's favorite video and she is now teaching baby sis. Your post reminded me of a very special song on there, it shows a range of children laughing playing and overcoming limits and the chorus is about how they shine in their own time. It is my favorite video much better than Womanizer, I promise! Hugs, Jen

Brian_Staci said...

My son was born with idiopathic BVCP. He too was able to breathe on his own and eat, but when he got sick, he couldn’t handle the swelling and we ended up in the hospital. Being the passionate mom that I am I refused to settle on the trach and researched every avenue possible. I exchanged emails with Dr. Cotton, and we ended up at the Mayo Clinic to try a procedure similar to what you described called lateralization. This was where they took a suture and pulled the cord to the side. However after a month his cord went back to where it was before. In December we found Dr. Mark Gerber in Chicago (trained under Cotton), and he completed an endoscopic posterior graft. Our son has done amazing. He has no stridor or retractions and has began gaining weight and growing again. He can eat just fine, he can speak just as well as before, and if by chance he ever does get his cords back, it should not interfere.

Every once and awhile I search the blogs to see if there is anyone out there with a child with the same condition as I have found very few. Feel free to check out my son’s blog: connordudleyblog.blogspot.com.