Let me start off this post by saying a mother intuition is ALWAYS best! Okay, now, take a trip back to July with me. More specifically, Malachi's last swallow study. If you recall, the results were not good. It showed that Malachi was aspirating honey thick liquids into his airway/lungs. Ugh. Our GI said "we need to get a g-tube put in right away." She even sent us to speak with the surgery scheduler that very same day. Josh and I were both in shock and decided that it would be bet if we took a day to let the idea of a g-tube digest. We didn't want to make a quick decision. We left the GI that day scared. At the same time all this was going on we were informed that our Speech therapist was leaving. I don't know about where you all live, but in Illinois it is almost impossible to get a speech therapist who will work with kids who have feeding issues. It took a call to our lawyer and the head education guy at our foster care agency to get us on the list (i was told the only way he would get to the top of the wait list was if Malachi had autism...! I know, i was shocked. I believe ANY child with a diagnosed medical complication should be put on the top of the list. Don't even get me started about that!) After about a month of fighting with our therapy provider, we were FINALLY go a speech therapist so to find out she was leaving was heart breaking. We were back to stage one. At that time Malachi was making huge gains with his eating the more we thought about it the more we began to worry about the steps back he would be taking with a g-tube. Especially because we had no speech therapist to work with him and teaching me how to strengthen those muscles. We were torn and didnt know what to do. We spoke with every single one of his Doctors and realized they didn't seem to think the g-tube was necessary this quick, there were other things they could do first. So much to the disappointment of Malachi's GI we decided not to go through with the g-tube. I worried that we had made the wrong decision and that Malachi would get really sick and it would be all my fault.
Today, we FINALLY got to meet our new speech therapist. She is AMAZING! She told me she wanted to do another swallow study to see where Malachi was since she had not seen any of the precious 3 studies. She got us an appt. in x-ray about an hour later. I was scared poop less. I was thinking "what if he is still aspirating? Are they gonna wanna do the surgery right away? What would feeding time look like now? I wonder which hospital they are going to do it at?" I was being a negative nancy, but deep down I knew we had made the right decision, no matter what the test showed. I got to feed him thin, nectar and honey thick liquids. And he only aspirated once on thin liquid! Woo Hoo! So he is safe to drink nectar thick liquid and does not need a g-tube! I cried like a baby when she told me the good news. She also told me she wanted to do some v-stim on malachi neck muscles and that after 4 treatments his swallow muscles should be strong enough to swallow thin liquids with no aspirating!!!! Thrilled, I am!
I'm ending this post saying "a mothers intuition is always best!"
Friday, September 25, 2009
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You are so right! That is wonderful news! Mother's just know best!
An insightfull post. Will definitely help.
Karim - Mind Power
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