"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Friday, September 10, 2010

Totally Aggravated

Well, the appointment today did not go as we had hoped, to say the least.

We got there and Dr. P proceeded to tell us that the sleep study results came back saying Marissa had a few episodes of both obstructive and central sleep apnea. She said based on these results, she would be on the fence about decannulating Rissa. Then she told us that, in about the last six months, she has questioned the results from this particular sleep lab and found them to be not as reliable as they should be. She said there have been several cases where the sleep lab in Colorado Springs said the kids had sleep apnea and then a repeat study done in Denver came back saying they did not, or it was not as bad as the first study said. So, she wants us to do another sleep study, this time at her new hospital in Denver.



I am so frustrated because the study we did two weeks ago was all for nothing. Nothing! I hate the fact that we have to put Marissa through all that again. For anyone who knows anything about sleep studies, I am sure you understand. It is not a comfortable thing for an adult to go through. But for a kid, especially one like Marissa who has very high anxiety about doctors and people poking, prodding, and sticking things to and in her, it is terrifying! I don't want to have to put my baby through all that again. She is getting to the age where she is going to start remembering all these things we are doing to her. I just hope she doesn't start to develop some serious trust issues. I feel so bad for her.

I am also a little perturbed at Dr. P for ordering a sleep study and allowing us to have it done at a lab she does not trust. If she would have just told us to have it done in Denver in the first place, I am confident we would have a concrete answer and Rissa would probably be decannulated by now. I know she has had her hands full with the move of her home and practice from Colorado Springs to Denver, working out all the kinks, but still. I just wish I would have known she did not have confidence in this sleep lab. You can bet I would have not scheduled it down here and would have had it done in Denver instead.

So, we will do this new sleep study in Denver and, if the results come back to where Dr. P feels good about decannulating Rissa, she will have us come back to Denver for a bronchoscopy and decan. Dr. P did say that she does mostly feel Marissa is ready, she just wants to do everything possible to make sure. Because re-traching her would be so traumatizing, for Rissa and us. I can respect that and I am glad she is being so thorough.

If the new results come back negative, Rissa will keep the trach until at least next Spring. Sigh...

I am so frustrated because of the timing of all this. Jeremy was on vacation all this week. That is why today's appointment worked well for us. Starting on Monday, I am going to be watching my friend's little boy during the weekdays. Now, I am going to have to ask my friend to find other arrangements for her son for the new sleep study and the bronch/decan (if that happens at all). I did everything in my power to keep that from happening. I hate having to do that to my friend. Also, Jeremy will have to take more time off of work. Blech.

I know that this is all according to God's plan, and His timing is perfect. But, if He would just follow my plans for once, things would go a lot smoother!

I am so tired of jumping through hoops. Especially jumping through ones we have already had the *pleasure* of jumping through before.

I guess those hoops were just not fiery enough.


ferfischer said...

OH man. That really sucks, I hate it when you go through a bunch of stuff just have it be for naught. Hugs!

Hope said...

That would tick me off too! I hate sleep studies. I hope the next one shows great results.


The VW's said...

This thoroughly stinks!!! I hate sleep studies.....it seems no one gets any sleep!

Praying they can get you in soon for another one and it goes smoothly and the results are much better!

Sorry you didn't get the news you had hoped for! Love and Hugs!!!

Shauna Quintero said...

LOL! I don't thimk God got the memo. I've sent Him several trying to sell him on my plan.

But at least the doctors could follow your plan! Geez. I hate that kind of stuff. I know your frustration. But it is thorough and now you can be 100% sure.

Seriously, she couldn't have had Marissa do the sleep study at the "right" clinic the first time??? What's up with that.
Maybe she thought if results came back okay, there wouldn't be a need for another one but since the results were funky, now it's time for the real deal?


ANewKindOfPerfect said...

That is crazy that she didn't send you to the GOOD sleep study place in the first place! I would be pissed. :( Poor Rissa.

I hope that the results from the NEXT sleep study are amazing and you are headed toward decan soon!

Sherry C said...

Hi Alicia ...that is just plain not fair and not well thought out that for sure. I'm catching up on all my blog reading I've been super busy with the 4 kids home now schools back on and I want to blog again I hope your summer was great.

Michelle said...

I just have no words, Alicia. No words. I know, though, there really are no words. I'm so sorry. I'm praying. Be weak my friend, because our strong God is holding you. In his Love, Michelle

Colleen said...

Oh my goodness, I'm so sorry. Yeah, I would be mad too that the Doc didn't bother to just send you to Denver in the first place. Hang in there!

Momof5 said...

I love you. BTW, I love ya! Jeremiah 29:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Ann said...

I would be a little ticked with your ENT too. She should at least have told you her experience with the sleep study lab and given you the choice to go directly to Denver in the first place. I'm sorry you and Marissa have to go through it again. Plans .... why bother, eh?

Lacey said...

I would be ticked! Why is she sending you there if she hasn't been happy with the results. I don't think they should even charge your insurance for doing it!
Just make sure that you are the good guy, and make all the medical people do all the dirty work, so Riss knows that you are her comfort, and that you would never hurt her!

Jessica mommy to Alex/ RTS said...

Oh MY! That doctor should have sent you to the right lab in the first place! GRRRR!
We have not had to do a sleep study yet...I fear the., I kow good and ell what its all about, and I fear it....
Im sorry. At least its poke free...

The round-the-worlders said...

Alicia, Thanks foryour blog. I can't tell you how much you inspire me with your thoughts and your writing. Just remember, we all hold our treasure in earthen vessels that are more than just a little cracked. forgive and move onand the blessings will come back to you multiplied.

Tonight, I preach at Church. I am going to use the quote you opened with as part of the sermon. It's just too good not to pass it on. thank you also for sharing your yesterday. made the troubles and worries I had yesterday seem trivial to the extreme.

Iam also going to share a bit of your blog during our prayer time and we have some pretty powerful pray warriors in our congregation.
And of course you are in our prayers and Hearts constantly. Keep up the good work and keep writing. I need all the inspiration, hope and joy that you supply so well and with such abundance. All our Love and prayers, Bubbe and Zayda

Faith said...

Alicia- We can totally relate to this situation- except ours involves the sleep lab in Denver! We've had three sleep studies- all inconclusive and a big waste of time. Hopefully your luck will change.

It seems crazy to wait until Spring b/c of someone's error!

That's life as we know it, eh?

Happy Belated Birthday! Glad you had a nice time off w/Jeremy.

Jen :)

Michelle and Sean said...

I just can't even believe that! How annoying. Why in the world would a doctor that knows Marissa so well do this to her. I am so sorry! Poor sweet girl has to go through this again. How traumatizing.

We will pray that the results of this next study are great and everything can be set up for decannulation!!