I took Colton for his 3rd Swallow Study at the end of September to see if he was making any improvements with his swallowing. He's been drinking liquids thickened to Stiff Honey since he was 2 months old. His Speech Therapist joined me for the appointment so that she could see how he did and ask questions I might not think to ask. I was so glad she was there with me!
We were hopeful that Colton would show improvement, but unfortunately, that was not the case. Colton was able to eat food without aspirating, however, he did aspirate on Honey Thick liquids. He even aspirated on Stiff Honey liquids. He doesn't aspirate every swallow, but he does have some penetrations toward the airway. They think that he might aspirate every 6 swallows or so. Bummer! With aspirations, Colton is at risk of getting pneumonia or a serious lung infection. Since it has been almost 20 months since he started Stiff Honey and he's still showing no signs of improvement, they wanted to refer us to an ENT to have his throat looked at. They think that something other than low muscle tone is causing his swallowing issues. I was a little defeated but I'm learning to take things in stride so only a few tears were shed. Our ENT appointment was scheduled 3 weeks later, so we didn't have to wait long to find answers.
I was warned ahead of time from several friends that the ENT would want to do a scope of Colton's throat. They told me that I needed to prepare myself because it wasn't a pleasant procedure. Luckily, they told me it wouldn't last long. A nurse sat in the chair with a sheet on her lap to wrap around Colton. I warned her that he is a STRONG little dude when he wants to be.
They sprayed his nostrils with a numbing solution and then stuck the scope in his nose to take a video of his throat. I was able to watch the video during the procedure, which was cool, but I had to listen to my boy scream bloody murder. It was SO sad. It only lasted a few minutes and then they were done. It took a little while to calm him back down after the procedure...and the poor kid did have some blood in his mouth.
The ENT thinks that Colton is having trouble swallowing due to coordination issues with breathing and swallowing. Colton's adenoids and tonsils are extremely large and the back of his throat is extremely crowded. He's just having trouble managing everything. Her recommendation is to remove Colton's tonsils and adenoids and trim any tissue near the larynx that may need to be trimmed. She said she can't guarantee that by removing tonsils and adenoids his swallowing issues will disappear completely, but it should help. With continued therapy, he will eventually be able to drink regular liquids. She is concerned that if we don't remove them soon, he could get a lung infection or pneumonia since he's not technically "safe" drinking Stiff Honey thickened liquids. So she wanted to get him on the schedule ASAP.
But we have a problem...Colton is NOT allowed to have any surgery because of his heart. Colton has fenestrated ASD's and his Cardiologist told me back in the spring that if an air bubble were to get in the line of the IV during a surgery, it would kill him. We have a referral in to meet with his Cardiologist. I'm waiting to hear when that appointment will be. She will make the decision on whether or not Colton is allowed to have surgery. In my opinion, I don't think he's going to be allowed to have surgery and I don't know that she's going to want to do his heart surgery now (as opposed to when he's 3 or 4 years old) when he hasn't been very sick. He's been lucky so far! I am super serious about thickening his liquids and I always make them as thick as I can. I even thicken his Tylenol before I give it to him. I do my very best to keep my boy healthy.
So now...we wait. Hopefully, we will meet with our Cardiologist soon and she will make the decision. We would appreciate your continued prayers for our Colton. Pray that the holes in his heart close. Pray that he will eventually be able to get his tonsils and adenoids removed so that he will have an easier time drinking and breathing. Pray for me as I try to be strong and hold it all together. This journey isn't an easy one, but I'm thankful to have a wonderful support system to walk with me every step of the way.
"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to Him, and He will make your paths straight." Proverbs 3:5-6
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