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.