Monday, April 4, 2011

Just one more thing...

Sometimes I wonder how many "just one more" things I can handle.

We already deal with Diabetes. The finger pokes, carb counting, insulin providing, sleepless nights, etc that Diabetes entails with The Superhero.

We also already deal with Asthma. The inhalers, maintenance meds, more sleepless nights and breathing issues.

And now, just one more thing...

I took The Princess to see a pulmonologist in March. We were told in January about The Princess' asthma from her pediatrician and she was put on meds through the nebulizer. The round the clock treatments for weeks were getting to me, so I decided to see a specialist.

At our appointment The Princess was put on 2 different inhalers. Along with that, a swallow study was ordered, since The Princess coughs A LOT and often ends up gagging/choking when drinking liquids or eating her food. This test would help us see where the liquid was going when The Princess was drinking. A routine type of test. It would be weeks before this testing could be done. And we would just proceed treating the asthma at this time.

This new regime seemed to be working for about a week. Then The Princess started coughing a lot more. We went back to the specialist and added another inhaler and Singulair. Since these new changes she has gotten MUCH better. Now we are only doing the maintenance inhaler and the Singulair. A TON BETTER.

And then today we finally had the swallow test. I went in thinking it was no big deal and she would do great. She had no problems swallowing, right?

Boy was I wrong! She drank drink after drink of barium (she called it ice cream). And apparently when she is swallowing liquids some of the liquid goes toward her air ways before entering her tummy. The muscles that make the liquid go to the tummy aren't strong enough to do their job. This could be the cause of her coughing. This could be the cause for a lot of things that The Princess has had going on for a long time. And if we did nothing she could develop pneumonia more often and possibly cause long term damage to her airways/lungs.

So, what do we do to treat it? Thicken ALL liquid intake. She can no longer just drink water. She must have thickened water. She can no longer just drink milk. She must drink thickened milk  She can no longer just eat a popsicle. We would have to make our own thickened popsicles. No more juicy fruits, suckers, ice cream, etc. We now have to add a thickening gel or baby cereal to her liquids.

Can you say thirst quenching? Yuck! Fortunately, she was still drinking the "water" ok. And I bought her some chocolate powder to make a thick chocolate milk for her. Or thick Apple juice.

I feel like I went in thinking it would be nothing and came out of a whirlwind with yet ANOTHER diagnosis and maintenance plan. And the whole way home all I could do was think "I can't wait to get home and google this to see what else I should know!" (thinking of Joanne the whole time!)

This is something she could potentially outgrow. We will re-test in 3-5 months to see if there is any improvement.

Just one more thing. Right? :-(

*Disclaimer: I am a mom of a T1 Diabetic child. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*


Roselady said...

Oh my gosh, that would drive me crazy! Sorry. Sometimes you can't believe the things that are thrown at you.

Alexis Nicole said...

First (((HUGS)) cause that one more things always feels like everything else is heaviier thann before.

Synsyre had the issues as a toddler. Asthma he still has, he uses a nebulizer as well.

And ironically Justice has similiar swallowing issues, except they called it reflux. Everythinng was THICK! His started at birth and ended at 7 months.

I pray its the same for Princess and it goes away asap!!

Joanne said...

So sorry for this "one more thing". I hope Google was able to help you and thanks for the link!

Jules said...

oh gosh. thats scary for sure. i would be googling additional resources too! seems you cant solely rely on doctors these days. i wonder if those muscles will strengthen up?

Jen said...

I'm sorry Tracy! I hope it is something she will outgrow and this new "one more thing" will be temporary and very quickly forgotten! XO!

busymom said...

Oh gosh, I'm SO sorry. That does NOT sound refreshing. Are smoothies thick enough?

Can you do anything to :strengthen: the muscles that take the liquid to her tummy?

I'll be praying for your princess. Sometimes we feel like the *one more thing* is going to be the last straw, yet somehow we keep going. : )

Kris said...

(((HUGS))) Tracy. You know I have experience with this so I'm here if you want to talk. I'm praying she outgrows it!

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