Thursday, July 28, 2011

A Quick Update

Went downtown early this morning for the swallow study and hematologist appointments for The Princess.

She went into the radiology room for the swallow test and freaked out a little thinking they were going to poke her. Once I explained that they were not poking her, she was ok. She drank/ate her "barium" mixes and was done pretty quickly. Unfortunately, nothing has changed. She still swallows thinner liquids and some goes toward her lungs. Not good.

She should have outgrown the swallowing difficulties by her age. Since she has not, we can wait it out and just do the re-check in 6 months. Or we can try a stimulation therapy, which has been proven to strengthen the muscles and retrain the body to swallow correctly. We would have to go for therapy 4-5 times weekly for 6 weeks or so.

At this point, I have no idea what we are going to do. I will talk to her pulmonologist next month and see what she thinks.

Once all that was over, we headed over the the hematology office. They drew her blood and she got her prize/stickers. Sad to say, her platelet count was down to 13,000.

Sigh.

We had the same options we always do, watch and wait or treat with IVIG. We chose IVIG this time since she will be starting at the daycare 3x per week next week.

Since it was still morning, we went ahead and stayed today for the treatment rather than coming back tomorrow.

We were lucky enough to have an amazing person come put her IV in this time around. He got it in on the first try and she did NOT cry AT ALL! I was impressed and will totally request him if we need another one! Best IV experience EVER.

Then on to the infusion area. She got all hooked up, got some snacks, filled her drink up, and started a movie. Then benedryl and tylenol were given. And after a while she fell asleep. She was more restless this time around. I am not sure if she just wasn't feeling great, was over tired from being up early today, or if it was all the noise in the clinic today. She ended up sleeping for most of the treatment and woke up at the end to watch more Cinderella.

We are home now and she is watching Tinker Bell. Dinner will be here soon and then off to bed for both of us!

I will be pre-empting the side effects we had the first time she had IVIG, and starting Zofran and Tylenol with codeine tonight before bed.

Thank you all for your thoughts, prayers, and messages. I am so thankful for the support of all of my friends and family!

(also, I cancelled The Superhero's pulm. appt. and will re-schedule it soon)


*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. 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.*

4 comments:

Leigh said...

Sorry you didn't get the results you were hoping for :(. Praying you all have a good night tonight!

Denise aka 'Mom of Bean' said...

...I've started and deleted this comment like four times!
So, I'm just going to let you know that you and your family are still in my prayers.

Amy said...

Oh Tracy . . . it is pouring battle after battle in your house and for that I am so sorry. I will hold your family in my prayers and keep you there until all this passes. It will. Hang in there, sweetie

Misty said...

Hey there! Just want you to know that I have been reading, just haven't had time to comment. Your family has been in my prayers. Hugs!

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