We started with spoon thick (rice thickened baby food) consistency.... and although it takes him 3 times as many swallows to get it down, he does it safely and is NOT aspirating.
From there... it was trouble...
Jonathans results are in red
Levels of Liquid Thickness
Liquids are placed in the following levels of thickness or texture:
Thin liquids, such as water, milk, juice, coffee, tea, carbonated drinks, Jell-O, ice cream, sherbet, sorbet and broth-based soups
(ASPIRATION)
Nectar-like liquids, such as fruit nectars, maple syrup, Ensure, eggnog, tomato juice and cream-based soups
(ASPIRATION)
Honey-like liquids, the consistency of honey
(THREAT OF ASPIRATION)
Spoon-thick liquids, such as pudding,
(NO ASPIRATION)
As far as solids, he swallowed those whole, so thats no good either:(
Their recommendation... go to ER and get an NG tube placed, schedule surgery to have a G-tube button and stop all liquids by mouth....
WHAT!?!?! Back this bus up!
First of all, his lung x-rays look great and he has never even had a coughing cold, much less pneumonia. Secondly, the only fluid he gets is breast milk, from the breast and you can't test that mode of entry on an xray. Maybe all this breast milk is what is keeping him so healthy?!? So far it's working, so yeah... lets not fix what's not broken howabout? Caleb and I have discussed and together decided we will postpone all other introduction of fluids except for breast milk from the breast (as I had already been doing) continue with spoon thick baby food (as I had been doing) and we will seek help from speech therapy.
In the meantime, I'm scheduling an MRI and a visit with the surgeon who did his closure surgery and shunt placement. If this is ACII related, I want to, if possible, fix THAT problem not just all the symptoms.
Gurrrrrrr!
On a personal note: It is SO scary having a child with eating/reflux/aspiration/apena issues. I've seen my boy turn blue, more times than I'd like to count. I can never let him out of my sight, even while sleeping. It's exhausting and scary. Most days are good, but those where he has an episode are just reminders... life is SO fragile and SUCH a BLESSING! Thankfully, I know, God's "got this" and He's "had it" all along and THANKFULLY, He NEVER lets me OR Jonathan out of HIS SIGHT or out of His hands!
I'm glad that you decided to wait on a g-tube and you are thinking about what's best for Jonathan. As parents, we often know what's best and when it's time to make big decisions that can be life changing. We found ourselves in the same exact boat last summer and were really pressured on a g-tube. It's a constant battle and something we still struggle with but we manage and stand by our decision. God will watch over your family and Jonathan is so blessed to have such great parents. Alex is also on pudding thick foods and I make all of her food (with the help of a food processor) so I'm happy to share any information with you when you get to that point. We also thicken her milk and use a specialized bottle system that works well. Stay strong!
ReplyDeleteI just stumbled across your blog, but am so glad I did!!
ReplyDeleteIt's been years, but my son had MANY of the same eating issues it looks like yours does. We did NOT have any of the surgeries, and today he gets GREAT and there are only a few foods that he can not have (and he is 9 years old now).
I was super creative on keeping him balanced healthy food wise, without creating choking hazards and constipation issues, so feel free to ask any questions you might have as time goes on.
We did modified diet until he was about 6, tons of speech therapy working on strength and OT working on mouth stuff. We also had his tonsiles and adnoids removed (to help with choking and the sleep apnea he had... both were almost completely solved with that proceedure!)
And you are so right, it is TERIFYING as a mom, but God is in control and loves our children more than we can ever imagine! Blessings to you and your family!