We have had a lot of decisions to make regarding this surgery. Whether to do an endoscopic surgery again (for the 3rd time) or do an open surgery, which will also enable the Dr. to take cartilage from her rib to build up the cleft and give it more support. He couldn't do that by going through her mouth. Also, whether to ventilate her for a couple of weeks or to give her a trache. I have cried and cried and prayed and prayed about this. I cry again as I write this. I DO NOT want this. The last thing I would have expected was that my daughter would get a trache. I remember someone telling me at church right after she was born that their friend had to get a trache and you can't even tell now. I wondered why she was telling me that and said, "oh, she'll never have to get a trache." Never say never. We know it's the right thing to do in the long run and ventilating her would cause irritation on the sutures, possible causing them to come undone, let alone the weaning off the drugs she'd be on to keep her sedated. Oh, that was terrible in April. I DO NOT want to go through that again. One Dr. also reminded me that this IS NOT a surgery for a trache. This is a surgery for her cleft and the trache simply keeps the airway open for a few months until the swelling goes down and her throat can heal. That statement helped a lot. We can do anything for a temporary time. I keep telling myself that.
She now has a level 3 cleft as opposed to what we thought was a level 2. This is the reason for the cartilage being built up. He said it was a higher level 3, but it still breaks all the way through, like the picture shows. So grateful it's not a level 4. I wish this surgery was a surgery that we just go in and "fix it" and it was successful. It's may not be. So many times it is months and months before seeing any success rate. And I have inquired about a few level 3's on a FB page I am on and a lot of times the surgeries are getting them to a level 2 and then they may need to go in again to have it fixed again. I am hopeful though, that as this being an open surgery, there is a higher chance of that not having to happen.
Levels of Laryngeal Clefts
We have had a few appts. before surgery, a couple with GI, to check on Ruby's nutrition. She has done well and is on the lower end of what the Dr. wants her to be gaining each day. But she's gaining and that's huge and the Dr. is happy with that. Ruby is so amazing. She is the HAPPIEST baby. She has such a sweet, tender nature and doesn't cry often. I always say, I feel so bad that she has to go through this because she is so sweet. But she is probably so sweet because she goes through this! Everyday stuff is miniscule compared to what she has to go through in the hospital. Why cry about it? She teaches us so much.
We also just met with the eye Dr. I swear the eyes are such a slow complicated process. I get so frustrated that we can't just get her the glasses I know she needs. I know she doesn't have great vision. The left eye is still cloudy. The Dr. asked if it was getting any better, and I said, "I really, really want to say yes". But my heart knows it's not and it's hard to say out loud. I know it can, but it's not yet. He tried to get a prescription for me and I was so hopeful, but he said he couldn't see into the back of the right eye (THE GOOD EYE!). There is something blocking it, whether it's scar tissue or (he didn't give me any other options). I don't know what that means. They aren't good at explaining future. So they have to put her under and look that way. I started crying. I don't want to schedule her AGAIN to go under anesthesia to get it checked. Then if there is something, they don't touch it and schedule AGAIN to do the work. Did I say slow process? I meant SLOW. It's like anesthesia left and right for them and no big deal. It drives me nuts.
After I told him when her surgery was, to see if they could do it then, he told me he was scheduled for surgery at another facility. I asked if any of his partners would be at PCH and if they could look since they weren't doing anything. Our first eye Dr. we found out would be there. I got a call from his assistant today saying he would do it! YAHOO! I said I was so thankful, and she informed me that she was surprised. He NEVER says yes to doing things like that, but when she went in and asked him, he didn't skip a beat when he answered that he would. I said, THANK YOU, THANK YOU, THANK YOU!! I thought my prayer wasn't answered when we couldn't get that prescription in the office yesterday, but it was. And obviously there is a benefit from seeing what is going on in Ruby's eyes in more depth.
Back to surgery. Because that is mostly what I think about right now. I told Nate they should put a movie theater in the hospital. He said I wouldn't be able to concentrate on the movie anyway. He's right, but it would be nice to atleast try. What do you do for 4 hours when you can't concentrate on anything else? I guess I'll let you know in a week.
