Thursday, May 18, 2006

Swallow Study

Noah had his first swallow study yesterday with Dr. Rempel. Unfortunately he did not do well, so no oral feeding for the time being. It was quite fascinating to watch though. I fed him a tiny bit of thickened breastmilk (with barium added) on a spoon. He sat in front of the xray machine and we could watch how he swallowed on the monitor. He enjoyed it, but as we watched him trying to swallow, it was obvious that his swallow is not functional. He was able to manipulate the food with his tongue to the back of his mouth, but it took him about ten to fifteen swallows to get any of the food down his throat. He just kept swallowing and swallowing but the food just pooled at the back of his throat. Then he would take a break to breathe, causing his airway to be unprotected. So the risk of aspiration is very high, plus he would burn waaaaaay too many calories trying to get the food down. It only took a few minutes and we knew he wouldn't be able to feed orally right now. It was disappointing, but I wasn't too suprised. We will wait a few months and then do another swallow study. But likely his wide open palate is a major reason for his swallowing issues, so he may not be able to do any oral feeding until after the palate repair.
Noah's g-tube has also been causing him some pain because of granulation tissue again. Basically when his tube gets aggravated, his body tries to heal his stoma (the hole into his tummy). But because the tube is holding the stoma open, raised red tissue forms around the tube. So this morning we went to see the surgeon who applied silver nitrate to burn the excess tissue away. Yes, it sounds painful, and it is. But Noah was a trooper as always and only cried a few minutes. Hopefully the tissue will not grow back or we will have to keep having it burned off.
Despite the disappointing swallow study results, I am glad to know exactly what Noah is capable of right now, and not have to wonder if we should be doing anything different. And I am so thankful for the technology of the g-tube. It truly is Noah's lifeline and his only option right now. No swallow used to mean no life. So despite the grief and aggravation that tube causes us, thank you Lord for the g-tube!

5 comments:

Kim said...

Nichole
I don't think I tell you this often enough, but you are an amazing mom to Noah, as well as Joshua and Kailyn. I see the love you have for them in everything you do - be that changing diapers, feeding by tube or getting Noah to laugh his wonderful laugh! You are an inspiration and a God-given gift to me.

Kim

Anonymous said...

we marvel at the wonderful parents yu and Brad are, and how you care for this gift God has placed in your lives. We know that God has a specific mission for Noah on this earth. he has already drawn many closer to our heavenly Father. love mom

Erik, Jamie, Micah & Baby said...

We love all of you guys and we also thank God for the technology that allows Noah to eat! We'll be praying for patience for you guys as you care for Noah (and Josh & Kailyn!) every day. Micah says he can't wait to see all of his cousins again!

Anonymous said...

I thank you so much for keeping us informed about your miracle baby Noah.What a trooper he is. You as a family truly are an inspiration to many around you and we can see that God is faithful as He gives you the strength each day to carry on.I am learning so much from this blog.If at all possible please keep it up.We will keep praying.
Auntie Hilda

Anonymous said...

Nichole,

I'm Suzi and my beautiful eight-month old daughter Elisa also has a rare chromosome disorder(unbalanced translocation 3q25.1-3qter; 7q36.1-71ter). Like Noah, Elisa has a dysfunctional swallow and must use a G-tube to eat. Her tube does cause quite a bit of frustration too, I know how you feel. It's already come out three times. But praise God that Elisa can thrive and be healthy as a result of this technology. Elisa has a cleft palate (but no cleft lip), facial palsy on the right side, low muscle tone, motor delays, seizure disorder, mild reflux, blocked tear ducts and a mild hearing loss on both sides. She also may have a thyroid problem and is somewhat overweight. She is my blessing and truly a miracle baby, she has made it through so much. There were many times when I thought I might lose her due to respiratory and feeding issues related to her aspiration (which is her main problem now). But she has shown how strong she is in the Lord as she continues to grow and thrive, my beautiful baby girl.