Tiara had her swallow test yesterday and just as I expected she failed! I knew she was aspirating but I wasn’t sure to what extent. Apparently the moment she took a sip of the barium with a straw they watched it pass over into her lungs. Clear cut aspiration. She coughed but it was delayed, 2-3 seconds after she swallowed, not good enough to protect her lungs from foreign substances.
The test ended very quickly , I don’t think it even took 10 minutes. The speech therapist looked over at me and said “ she can’t drink or eat anything that isn’t thicker than milk, nectar consistency. You are going to have to thicken anything she drinks with Simply Thick (nectar). At this point I was super grateful she said Tiara could eat solids because I knew going in worse case scenario was her getting a g-tube and not being allowed to eat food in the future.
I already knew she was going to give me bad news so I was some what prepared but all I could imagine was TT and I at Target adding some stuff to her diet coke before I could let her drink it. Once she gets her strength back and is able to move around the house freely how am I going to keep her from chugging a bottle of sparkling water? What if she grabs my water glass I always keep laying around the house? What about the bottles I keep in the car? The what if scenarios keep swirling in my head.
Of course the speech therapist made it sound like it wasn’t that big of a deal and I would just have to creative with the whole idea. Oh
I forgot, I am supposed to have her drink in a thinner diameter straw to slow down her drinking also. She suggested getting those fun curly straws from the party store, the ones that are impossible to clean and don’t fit in any utensil drawer and I always throw out when the kids aren’t looking. Yes, those ones. I hate those straws!
Hmmmm, I guess it should be easy, you all saw the video of her shoving food and soda in her mouth. This is me being facetious.
Yes, I know thickening everything is a million times better than spending her life in the hospital in a state of chronic respiratory distress, but it just feels like yet another job to complicate our lives. Unfortunately the past few months feel like the beginning of a new phase in Tiara’s health which isn’t going to improve anytime soon.
Looks like we are going home today, most likely. My master bedroom now has an oxygen concentrator and 7 other assorted tanks in various sizes, a pulse oxometer and a suction machine waiting for us. A total sanctuary just like they talk about in all the home design magazines.
Future prediction as to where I see this going? Option 1:Tiara refusing to drink the thick liquids and ending up dehydrated in the ER within days. Option 2: Me giving in to her pleading for ice her favorite thing to which she is no longer allowed and her getting another pneumonia right away. Farther down the road….. Tiara with a g-tube once again, hooked up to feeding during sleep to prevent chronic dehydration.
Sorry for the negative thoughts, but even I have a breaking point and I may have reached it.
xoxo tiffani
Oh I am so sorry for the prognosis and can understand your feelings here. Tiffani, you are allowed and seriously you are human. God bless you and can tell you I probably would have broken so much sooner then you and you are truly amazing to me. So, for you to have a moment, is normal and just know I am totally thinking about you. Sending you good thoughts and please vent away we are here for you!! 🙂
Thanks for the support and daily encouraging words! I love reading your comments everyday even though I can don’t respond all the time. xoxo
Hello Tiffani sorry to hear about Tiara’s swallow study. I will continue to hold you and your family in my prayers and like *Janine* said you are amazing and an amazing mother!!! I’ll be thinking only good thoughts for you and Tiara! <3
Anyone that would blame you for being discouraged or try to talk you into looking at the bright side of the situation would be an arrogant idiot! I know how hard this new protocol is going to be! I’m so sorry one more thing has been added to your plate. Praying that you’ll have a cooperative Tiara. Would she be able to understand that the changes might keep her out of the hospital? Maybe that could be an incentive! XO, Sylvia
You are funny Sylvia, your comment just made me laugh! Thanks for that
Hi Tiff,
Awwww Crap. As a speech therapist I have done many swallow studies, but it was always on old people that had had a long rich life and plenty of thin liquids. I was NEVER able to work with kids in the hospital. I never even tried. I knew I couldn’t do it. So, I have a sense of what you are looking at here cause I have thickened those liquids many, many times.
My immediate question is, why all of a sudden? I’m assuming the swallow delay is neurologically based, but why now? Did anyone have any answers about that? Does this mean something changed neurologically recently or maybe this was something you dealt with in the past? I’m only asking because I was hoping it wasn’t permanent. Often, my patients would aspirate purely because they were sick or weaker than usual. Than, when their health and strength improved, their swallow did as well…..just grasping here. There are also techniques that help to protect the airway, maybe you know these? One simple one is to tuck the chin to the chest when swallowing. Maybe, once Tiara is stronger and “in the clear”, you guys could share a diet coke in a cup- you each get 5 sips and with each sip you tuck your chin and swallow. This might “quench” her craving for her favorite drink….I know it sounds ridiculous, but I’m just thinking out loud here.
My new thing I do when things are challenging or seem crappy is, I ask “What if this is wonderful?” I think of every thing as God’s will, and so if I really believe this, then there must be something in this challenge that is for my highest good.
While this new development seems treacherous at the very least, keep your eyes open for the blessing in it…..it’s gotta be there somewhere. Maybe the forced decrease in P.O. intake could improve Tiara’s health in other ways? I mean I know she will still crave her snacks, I don’t know……Let’s see what happens. Try to stay right in the present because it’s the only thing we really have . The future isn’t here yet, no matter how good you are at predicting!
Please continue to let us all know how things are going with the swallow….
Sending love and prayers to you guys,
Marcy
She has had swallowing issues since she for years but they worsened when she hadthe Trach and the strokes. I need to talk more with the docs but my gut feeling she condition has worsened because of her frail health at this point, but she could improve? Definitely going to keep your suggestions in mind ! xo
You’re probably imagining Tiara sucking a thick milkshake through a tiny straw. Torture.
But a colleague whose son has Cerebral Palsy used a liquid nectar product to thicken all of his liquids and used thinner straws. I remember and it went fine and that it didn’t even create a substance so thick as to be very noticible.
As for the straw, yeah, that’s a bit more obnoxious to clean but I recall that she’d bought a couple dozen and then would throw them into small plastic tub with soapy water and after collecting enough, she’d run each under hot water (in and out) a few seconds and….good as new!
And the greatest blessing of all, Tiara can continue to eat solid foods – which is great!
Would your auny cindy’s straws help the situation? Keep sharing with us. It hopefully helps you and us too.
Yes, she emailed me this morning and is going to make tiara some medical grade straws for her. So happy for that!
Keep on trucking mama bear. We have to move mountains in this TS world and it’s not easy. Praying for better days ahead. Glad you will be home today. Hugs!
You make me laugh and cry, Tiffani! So sorry you have to go through this. I can’t even imagine the difficulty and frustration. You have such an AWESOME attitude- don’t ever doubt it~ You are an amazing mom. <3
Oh Tiffani ~ you have been through such an ordeal this past month. You ARE ALLOWED to break. You are human too … although you are one of the strongest humans I know. I honestly don’t know if I could handle as much as you have gone through. You are such an inspiration to me.
I am so sorry for the crappy prognosis. I can only hope that Tiara is able to make an easy transition.
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(¸¤ Lanaya | xoxo
http://www.raising-reagan.com
Oh man! That stinks and with all that you have been through! I love all the ideas that people have given you! I wish I had some piece of wisdom but all I can say is that YOU ROCK! What a wonderful group you have gathered in life and, now, on your blog. This fantastic outlet for you has blessed many of us and caused us to count our blessings and be grateful, daily. What a precious gift you are able to give even in the depths of your pain! I can’t tell you how much I appreciate your transparency and honesty as you passionately respond to life’s circumstances! Prayers for you to keep on keeping on! God gets it and wants to draw you closer to him through all of this!
I understand how frustrating eating/drinking/medical issues can be. My daughter has a g-tube (has had it since 3 weeks old) and at 2.5, we are getting ready to remove it (with me much more nervous about it than anyone else). Hugs! P.s. – new to your blog and loving it so far.
Have you considered the Frazier water protocol to allow her the ice water and ice she loves so much? I also have had patient’s make water popsicles. I agree with the thinner straw as an option and often recommend those hand held emulsion sticks for soups and juicy fruits…..blending gets rid of that dual consistency issue with thin liquids such as watermelon, chicken noodle soup etc. You can also google homemade simply gel using xantham gum…..thickens so much nicer than the powder and much cheaper too. You can make a batch and keep it in the fridge ready to use with same ratio of 1T for each 4 oz or 1/2 cup.
Is this blog still active with Tiffani?
Hi,
This is Tiffani. I don’t write new blog posts for this site anymore but I leave it up for new families who have children diagnosed with Tuberous Sclerosis. xoxo tiffani