That’s how it feels around here sometimes.
You start to get feeling safe that maybe your kid was one of the lucky ones.  That after years of struggle and challenge you were going to make it out on top after all ……..with your kid alive.
Then fate steps in with an obvious need to keep me humble and before I know it, we’re back at square one.
I’ve spent the last few days doing a lot of research. Not a small portion of it being of the terrifiying variety.
Tomorrow begins our month of a zillion doctor visits, and I want to be prepared. Because I’ve done this before, I know the importance of a plan.
When we see Parker’s pedi tomorrow, I’ll be armed with copies of Parker’s 9.09 cath results. (Not to be confused with the results of his 4.08 cath results.) I also have a page of questions that I’d like to have addressed by each specialist we’ll be seeing next Wednesday.
My plan is to get these papers into the hands of each doctor that Parker will be seeing BEFORE our appointment. These upcoming visits are too important to be simple ‘cold calls.’ Doctors tend to sometimes pass a patient off to the next specialist on the list, with no communication between the other.
This go around I refuse to leave any office before I receive a definitive course of action.
There must needs be some good communication going on between the cardiologist, pulmonologist, and ENT.
And this my friends is easier said than done.
If there is one good thing about all of this, it is that I’m learning a lot.
I’m learning of faith. I’m learning how to discern between my desires and to listen for and feel the whisperings of the Spirit.
I’m pretty sure that the whole ‘Be still and know that I am God’ was counsel given just for me.
It’s been hard for me to know when the Spirit is speaking to me and when it’s simply just a random idea popping into my head.
Cause me and random have a long history together. Along with spur of the moment and ‘I don’t need any help, I can do it all by myself.’
Faith the size of a mustard seed? I’m thinking I may need to upgrade that to faith at least the size of a pumpkin seed. I’ve got way more than just mountains and mulberry trees to move.
Just a few small pumpkin seeds literally took over our garden this year. Look at the beauty and wonder they left behind.
To be able to feel a confirmation of truth is such a gift when trying to search out the best path to follow…….the best decision to make. It’s something I need to work much harder on developing.
Yup. I’ve got about a million miles of terrain to make up. A lot of it rocky and hazardous. But for this Brave Hero of ours… it’s totally worth it.
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Want to enter to win a 2009 Scentsy Candle Warmer and a brick of their amazing scented wax donated by Parker’s friends Katie and Kaylene?  It’s pretty simple. Feel free to spread the word with others too!  TWO people will both win an warmer and their choice of one of Scentsy’s Scentational melting scents!
And thanks to all of those who have already entered! I’ll make sure and get your names to Katie!
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About Tammy and Parker
We need to get together sometime. I want to hear everything they said about Parkers cath. Plus I want to meet that brave hero. Tell me when a good time for us to come down is.
We’re praying!!!
HUGS!!!!!!!!
I gotta say, this post spoke to me. Especially this part:
“I’m learning of faith. I’m learning how to discern between my desires and to listen for and feel the whisperings of the Spirit.
I’m pretty sure that the whole ‘Be still and know that I am God’ was counsel given just for me.
It’s been hard for me to know when the Spirit is speaking to me and when it’s simply just a random idea popping into my head.”
It so difficult, especially when faced with uncertainty. Good luck at Parker’s dr appt!
many prayers 4 u guys
Boy did your post speak to me! Thanks for sharing.
You are all in my prayers. Make the doctors look you and Parker in the eye.
Keep the faith going, it helps that someone somewhere is also experiencing what I’m going through, you’re right, it’s totally worth it!
I feel your pain with specialist! Our problem with ours is that they set-up a course of action with Tyler…I go do all the tests…then I call the follow-up and they cannot even remember which patient I was! It can be frustrating! That is a great idea to send the test results ahead of time…Let me know how that works!
Love your pumpkins!! We got lots of vines…but no pumpkins…I guess they had white fly…who knew??
I love your post today. I myself am on a new spiritual journey..so your words spoke to me today. Wishing you all the best with this round of appointments. I love your take charge attitude. Praying for you guys.
Hi Tammy this is Joyce. I so understand where you are. When Sarah was about five I had just had it with Dr. Cardio saying it was a Dr. Pulmo issue and Dr. Pulmo saying it was a Dr. ENT issue and basically doing nothing other than chasing circles. Once we were admitted to the floor from ER we would stay there for two to three weeks at a time because no one wanted to assume responsibilty for discharge and some set of numbers were always too high or two low. So I manipulated(which is actually a kind word to use to describe what I did) all three doctors to met up in Sarah’s hospital room. They were not happy. But I told them “Look, I can’t take this anymore. I want you three to talk to one another and get to the bottom of this. I cannot be the one to manage this case.” They stood there for a few minutes and then they actually started talking. The end result was Sarah is Sarah. She has her own baselines and if she looks good, wants to run around then lets forgo the oxygen even though her O2 sats were in the high 80′s low 90′s, forget the worry over the pulmonary hypertension even though the pressures were not great and just let the trach do it’s thing. I had them write up a paper that I carried in my purse at all times that said if we presented in the ER, do this and this and then send her home even if her numbers are not where they usually need to be for a patient discharge. It did wonders for us and bought us some time for “normalcy.” Within the next year Sarah had grown, her health had become more steady and the following September they were able to close the trach.
I tell you all this not to say that has to be the way with Parker but sometimes when you are dealing with so many different specialists they really do make the case more complicated than necessary and they all live by mal practice these days so they are sometimes afraid to go outside the box.
Stay strong my friend. Parker is growing in so many ways and looking great:)
Praying all goes well with all the doc appts and some clear plans are set out. I can’t believe how much Parker has grown up this past few months. He is looking so grown up
Oh girl!!!!! I just wish I could make it all better for you all!!!!
Parker seemed so healthy when I was there. He seemed like he could take on the world — and win. But I guess that is exactly what he HAS been doing these last 4.5 years. And you know what — I think he is going to KEEP winning!
And with YOU in his corner? WOW. He sure has an incredible hero for a mom (and dad and 5 siblings!)
Thinking of you and praying, as always, Tammy. We’ve done this too – the specialist thing – and yes, while it is like pulling teeth to get them to collaborate, it is worth it in the end and oh so necessary. I wish you luck, my friend. It is not an easy task. Remember, you are a rock!! Love to you…
Thanks Mom. We’ve had the same experiences in the past few days. Kinda funny eh? Love you! =D