Wednesday, September 24, 2008

A bunch of big words, again...

Okay, I am still here. Was today really only Wednesday? Holy cow...

Monday, I received an emergency call from my friend Amanda (whose husband is currently deployed...) regarding the massive amount of silly putty currently residing in her daughter's hair. So after I dropped Oren off at school, I then spent a good hour and some massaging mayonnaise into the hair and silly putty, and combing this dissolved putty out. Then she got a trim because the dry hair at the end broke off and it needed straightening. I did such a good job that I ended up getting to do Amanda's and her other daughter's hair! And I helped clean up a bit too, so that was a busy day. Soccer that night, and really wanting Pizza Hut but not getting it. Went to bed exhausted.

Tuesday, Nathan had therapy. Worked on the house while William had a nap, I sorely needed the quiet time. Just to take a breath. Still, somehow, went to bed exhausted.

Today, we went to see an ENT in Boise. She is about the only pediactric ENT on this side of Idaho, who only deals with children. And she is amazing! She only accepts handful of tricare patients a year, and we do have to pay some out of pocket to see her, about 15% of the total bill. But it is very worth it. The last guy we saw took a look, and shrugged. Literally. He had no idea, had never seen anything like it before, blah blah blah.

Dr. Beck did the exact same scope, had him say some words, and was in and out in about 2 minutes. Done. Not only that, she knows what the problem is! Not the full extent of how bad it is, but she does know what is causing his difficulties talking. Are you ready for some medical jargon? Here goes...

He has a submucous pharyngeal cleft of the palate and velopharyngeal insufficiency. Say that 5 times fast? In English: the muscles above the soft palate (the squishy roof of your mouth) are not formed right. In Nathan's case, they are pointed in the wrong direction. His are aligned front to back, or longways. They are supposed to be side to side, across the palate. So his palate gets shorter when the muscles contract, instead of longer. Not good. Also, the valve-y thing that closes when you say "p" or "b", and stays open for nasal "n" and "m", stays open all the time in his mouth. It can't close.

So, it may not seem good to you, but to us, it is an answer. I was almost in tears in the exam room, because somebody knew what the problem was, and told us how we could fix it. One of the hardest things about this was not knowing why he couldn't do it. And now I know why we had so much trouble nursing and other things. It wasn't my fault. There was nothing I could have done different. How could they possibly have diagnosed this on a baby? Every symptom could have been something else, like choking instead of nursing... too strong of a letdown.... that kind of thing. But now we can move on, and help him.

The next step is to go see another lady for a videoflouroscopy. A special fiber optics tube, inserted into his nose, that will allow us to see more closely what the muscle is doing, or not doing. We need to determine which surgery to do first, and that means knowing which condition is worse off.

Yes, he will need surgery. If they fix the pharyngeal thingy first, it means cutting flaps around the valve and stitching them in place to create a smaller space. So that it might close. There is a possibility that by doing that the muscles may be able to close the hole better and allow him more air pressure and get his sounds out right.

But if it doesn't work all the way, or if they decide to fix the muscles first, that surgery involves rotating the muscles to align the other way. I didn't even know that was possible!

No matter which way they go, he may end up having too surgeries, about 4 months apart. Both require complete anesthesia, an overnight stay with a parent in the hospital, liquids or very soft foods, lots of pain pills, and follow up appointments. The hospital where the surgeries would take place accepts Tricare, which means that we won't have to pay much if anything other than the percent of the doctor's actual fee. The room and all that shouldn't come out of our pocket. But a surgery like that, so involved, is going to be a serious chunk of change! His scope alone today was $285, plus the office visit was $115, so I forked out $70. Just today! No more Oreo's for me, I guess. Tighten the belt! Ouch!

But giving him the chance of normal speech is sooo worth it. If this is what the Lord needs him and us to go through, than we will. I don't know all that we will be required to do, but I do know that He has blessed us so much, in putting the right people in front of us, and giving us knowledge and resources. He softened the doctor's heart, so that she would agree to take Nathan. He gave Nathan such a wonderful little spirit, so calm and easy, and able to bounce back quickly. Not much fazes him and he loves his therapy. He gave me wonderful friends who are more than willing to watch kids for appointments and listen to all the medical stuff I have researched. And He has blessed Mark with superiors willing to let him have the time he needs when it is important to me for him to be there.

So I don't mind that this will be more appointments, and lots of money, and no small amount of stress either, because Nathan needs it, and the Lord has things that we need to learn and take away from this. I know He will help us through it, and I know that He loves our family. He knows my concerns, and understands my worries. And I am so thankful for the blessings we recieved today. You cannot put a price on recieving much needed answers, the results of faith and prayer. You can't put a price on a son's chance to speak and be understood.

Whatever it takes, Nathan, whatever it takes.

7 comments:

Nicia said...

I'm so glad they were finally able to give you an answer. We hope things continue to go well!

Rachel H. said...

HOW AMAZING! What a total answer to your prayers! I am so happy for you, and that things are coming together so well right now (minus the cost!) :)

Melinda said...

How gratifying, humbling and exciting to FINALLY know what's going on! I hope the next little while goes well, with the surgery and all. Will be thinking of you!

Calista said...

What a relief to finally have some answers! I'm so glad to hear that things can actually begin to move forward on that :)

Stephanie said...

When Mom explained all that to me yesterday, I was just like, Wow. I totally didn't know they could do surgery to change the muscle's alignment, that is just cool. I'm glad they were able to finally figure out what is really wrong, and have some answers as to how it might be fixed. Good luck!

Farrell Family said...

Hooray! I hope things continue to go well and the surgery is able to fix everything. Good luck!

Kathy said...

So glad that you are starting to get some answers and will be able to help Nathan now. The Lord is truly looking out for your little family.