Well, here it is...six months later. We had another follow-up swallow study done last week at Children's Hospital. We had been hoping for as good news as we had recieved last fall but we're a little dissapointed in his test results this time around. It seemed in the fall as though he was begining to make improvement and that it was the doctor's hope that he would continue on that path over the last six months so that he would be able to go off of the thickeners we use with his drinks.
This time around it seemed to be that he has regressed a little or stayed the same. The swallow study showed a consistent penetration of all the (single thick) liquids he was drinking and definate aspiration of regular liquids.
The recommendation now from the doctor in the pulmonary clinic is that we take Braden to see the otolaringologist (ear-nose-throat) doctor at Children's. We have a clinic consultation booked for May 8 and a surgery slot booked for May 24. What they want to do is (under general anesthetic) put a rigid scope down Braden's throat that has a camera so that they can have a close look at his epiglottis, larynx, voice box and such. The pathologist that did Braden's last swallow study had a strong inclination that Braden may have a cleft in his larynx. It would be consistent to believe this with what she saw on his last swallow study. I believe it is called a laryngeal cleft. We don't know much about it...I have read a little online but until we visit with the otolaringologist we don't have much information. All we know is that if the find what they suspect to find at this point then they can do surgery and repair it.
The doctor's have told us that if it was a developmental swallowing problem (which we've been thinking it was) they really would expect to see a lot more improvement by this stage (age 2 on April 20) and also an improvement with his reflux...which is still being treated rather agressively with med's.
We are still on the path of diagnosis it seems and continue to find comfort in the fact that Braden and we are all in the Lord's hands and that He directs our paths. I will try to continue with the updates in the next couple of months.
7 comments:
What a HANDSOME little dude Kristi and Brad! Or am I being crazy cuz I'm his aunt.
We wish you the Lord's blessing! Hopefully the extra medical attention will help in the long run.
We'll keep you in our prayers.
Anthony and Mary-Ann
We pray with you that all will be well soon.
Jeremy and Katherine
Hey Kristi
Thanks for letting us know you posted this. I was trying to explain to Tony what you had told me on the phone and I couldn't remember all the specifics so this is perfect.
We miss you guys and pray for you and Braden often!
with love, Alisa
Hello,
I hope you don't mind me posting a comment on your blog. I just couldn't resist, because I have a little boy who turned 3 this year, and he just had his laryngeal cleft repaired 2 weeks ago. It was a long and hard journey for us, as I can see it has been for your family as well. We too were told for some time that it was an "immature swallow." Thankfully we were properly diagnosed when my son was 6 months old, but it took a long time (2 years) to find the right surgeon.
Anyhow, I just wanted to offer some support and information on this, if it does indeed turn out to be the problem for your sweet little boy. I researched it for 2 years and may be able to offer some suggestions for you. Please feel free to email me at tandcplus3@msn.com
Sincerely,
Carolyn Schultz
Montana
Hey Kris....if you want to try and keep up with what goes on with me and work check out my xanga at www.xanga.com/Go_Dutch_Go.
Just catching up on your blog. We hope that a definite diagnosis can be made and hopefully fixed. Not knowing often leaves you floudering from one possibility to another. (Ruth wasn't diagnosed with her metabloic disease until she was 8 years old). Continue to trust in the Lord. Everything is good in Him.
With love, Uncle Bill and Aunt Jo
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