Thursday, January 31, 2013

Kennedy's Medical Update

Kennedy and I are home from Denver. We got in yesterday afternoon, spent some time with the kids and then of course we headed off to dance class! LOL It was a good distraction after a crazy couple days. I didn't get the news I was expecting at either doctor's office this week. I shed a few tears of frustration and sadness and now I'm better and ready to take the next steps, whatever those are.

We had Kennedy's GI appointment on Tuesday... this appointment was made for Kennedy in October after they did her upper endoscopy and colonoscopy. The results of those tests showed that her intestines were covered in excessive white blood cells called eosinophils which lead to allergy testing and a referral to this Eosinophil Clinic in Denver. Unfortunately there was a super long wait while all her results were forwarded to them and they could read them and then make her appointment. We took the first one available of course and waited anxiously while Kennedy continued to have awful stomach issues.

So, we got there on Tuesday and the doctor came in and told us that she does NOT have excessive eosinophils in her intestines, that they were in fact in normal range. They have known this for awhile from reading her reports. So I asked why we were there since I guessed he would not be able to help Kennedy. He agreed that this was not his area of expertise and we needed to go BACK to her GI in Colorado Springs... who doesn't know what's wrong with her. I asked why THEY thought she had excessive eosinophils and he said that sometimes they read the report wrong. So, WHY were we there? WHY did he not call her other GI and say, "No, this isn't it, move on to something/someone else to try to figure it out."? We have wasted months, while Kennedy's issues continue to get worse, when we could have been looking at other reasons for her stomach pain and diarrhea. *sigh* He did give me a prescription for an oral steroid to try but admitted it was a shot in the dark. I guess we will try it and see. In the meantime, I have to call her GI here and see what we're supposed to do next. Definitely frustrating. :(

Yesterday Kennedy had a follow up visit with ENT to get a hearing test done and check on her ears after her tubes were placed. She had her ear tubes replaced because they fell out and she failed her hearing test again in December. The good news is that her ear tubes are still in... it hasn't even been a month so they better be! haha The bad news is that she still failed her hearing test in her left ear. Her right ear is ok. The audiologist mentioned that maybe it's time to talk about a hearing aide for that ear. I admit, I was a little flustered by this. Usually she gets tubes in, passes her hearing test and she's good until her tube falls out and fluid builds up. She said it's very likely that the ear tubes have damaged her ear drum and the hearing loss is more permanent now. When we saw the ENT, she looked in her ears, said they looked great and said to come back in 5 months and that was it! I said, "HUH?!" LOL I asked her about the hearing loss and she hadn't even looked at her sheet yet. She too thought it was so unusual since Kennedy really does well with tubes so she didn't want to rush into a hearing aide quite yet. Whew! So now we go back in 3 months for another hearing test to see how she does. I may even ask for a sedated ABR (hearing test while she's asleep to measure the ear drum accurately) to make sure we are getting the right results. In the meantime, if you all could be praying that she passes her next test, I would appreciate it!! I'm well aware that with Down syndrome comes tiny ear canals (and hers are TINY!) and sometimes hearing issues. I also know that the chemo she was on has side effects like hearing loss. If a hearing aide is needed, we'll adapt and deal, but I don't want to cross that bridge until we absolutely have to.

Anyway, that was a lot, and I'm not going to dwell on it. LOL I will update again after I talk to her GI and figure out where to go from here. My next post will be happier, promise! :)


Monicas Mom Musings said...

More wait and see. Gotta love it. Best of luck. I hope they can figure all of this stuff out.

Anne B. said...

Aren't doctors supposed to have ANSWERS??? CORRECT ANSWERS???? AND TREATMENTS???? If only that were true! Can't believe you got such a runaround from the GI people/Eosinophil Clinic. YIKES! So we the ONE who's got it all in his hands! Meanwhile, I hope a Special K's mama can find some peace in all of it!! (((BIG HUGS)))!!

Lynn said...

Can't believe you waited all that time for him to say there was nothing wrong! Then to be scared with hearing aids, and then no hearing aids. What's the matter with these people?!
Psalms 27:13-14: I had fainted, unless I had believed to see the goodness of the LORD in the land of the living. Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD.
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Lund7 said...

Sorry you are not getting answers for her GI problems. That is so frustrating not knowing...

We were told that Ricky would need hearing aides after several sets of tubes, many failed hearing tests and resulting large holes in his ear drums. We decided to go with our ENT's recommendation to have his ear drums patched. What an amazing difference it has more infections and his hearing is within normal range for the first time in his life!

Melissa said...

I had tubes in my ears many times when I was younger, and ended up with holes in both eardrums. They did the patches for me, which worked well for one ear, but the other ear, not so well. Plus all the pressure from fluid has one eardrum at the wrong angel. I cannot pass a hearing test on that ear either. But it really hasn't harmed me too much. I know the ranges ( noises too high or too low, same with voices) and have learned to compensate. I do not have a hearing aid at the age of 37 nor do I want to get one until my hearing gets worse. Prayers for you all as you deal with the unknown.

Lynn said...

Praying right now!
Psalms 91:1-2, 4 He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty. I will say of the LORD, He is my refuge and my fortress: my God; in him will I trust. (4) He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall be thy shield and buckler.
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