Friday, February 29, 2008

Same Old, Same Old...........

But this time we have a semi-plan.......

We talked with Rhett's ENT the other day, after him and Rhett's cardiologist had a chance to talk things over together. (I must mention that these two men are amazing, and are incredible doctors.)

Anyways, the ENT called me and we discussed the UPPP vs Tracheostomy. The UPPP is going to be the very best chance that we have at giving him a semi normal airway. So we are going ahead with this. We don't have a date set, but Dr. ENT was going to fill out the paperwork to get it scheduled.

The problem we run into is, the tethered cord. When I told him that we had just found out that he had a tethered cord, he said that he would leave it up to the Neurosurgeons to decided if that needs to be done before the UPPP, which means that if he does need the cord surgery first, then it will mean a possible multiple day intubation, as well as a pro-longed PICU stay.

So we have scheduled the UPPP surgery for sometime after the 12th. We decided to schedule it now, because should he need the cord surgery first, then it will be easier to cancel the UPPP surgery rather than schedule it at the last minute. So as far as all of the surgeries go, everything lies in the hands of neurosurgery now.

We still go up on Monday for the Upper GI, and meet with the general surgeon who will do the Nissen/G-tube if needed. Who knows where we are going with this one.

As far as the heart cath goes, we are not even going to attempt that. His cardiologist says that there are way too many risks to do a heart cath right now. They don't even want to go there. I have also been told by the cardiologist, that no amount of meds in the world are going to help Rhett's Pulmonary Hypertension right now, until we treat some of the underlying airway and reflux problems first. Time is of the essence right now, before the Pulmonary Hypertension becomes irreversible.

His ENT made it very clear that the Cardiologist is becoming increasingly concerned about Rhett, and we need to get on top of all of these things very soon. My stomach dropped when he told me this.

So for now this is our plan, I am sure that it will change as we go through the appointment on Monday, and the talk to the Neurosurgeons on the 12th. We are in for a long couple of months, this I know.

We are also going in to the UPPP knowing very well, that if it doesn't work they won't hesitate to do a tracheostomy. It hurts to see my son who loves life so much go through all of this. It just isn't fair.

13 comments:

BiLlY, sAm, AnD bOyS!!! said...

do the dr.'s feel the uppp is the best? Just wondering because i know a trach CAN be taken out and closed can you do that with having a uppp? i am sure you are making the best decisions for rhett and i know you have researched everything i just thopught i'd ask. we will be at pcmc on the 13th. You will be there right? we will come visit if you don't mind!

Michelle said...

Ack, do you feel as though sometimes things aren't spread out fairly? Poor Rhett, having to go through all these upcoming surgeries - as if one wasn't enough!

At least the doctors are thinking of him & his care.

As always - Rhett's in our thoughts!

Laura said...

Oh Pam, I am so sorry you guys are going thru so much. We will surely keep you all in our thoughts and prayers. (((hugs)))

Anonymous said...

my heart goes out to you and your family, what strength you have. I am amazed by it...I will definitely keep you and your precious little one in my prayers tonight. God Bless you and your family
*hugs*
Allie

RK said...

Wow, Pam...it's so much. I can't even pretend to imagine the way this must make you feel when you look at that little guy. But we'll keep praying that he'll get through all this with his ever-present charm intact and he'll be ready to go like crazy on the other side of it all.

Kaden and Ava's mommy said...

My heart sank when I read what the doctor told you. I pray for Rhett daily. I hope things start getting better for you all. You are always in my thoughts and prayers. Love, Amy

Niksmom said...

Oh boy, even having a semi-plan doesn't make it sound any easier! Thinking of you and sending love. xo

Marla said...

Sigh. I am just so upset reading this. I read about the tethered cord. Thank you for sharing that because I was not sure what that meant. It is all so complicated and scary. Too much for a little one to deal with. I am glad you have a plan. I so know what you are feeling about it not being fair. Hugs. Hugs. I am praying for you all. How is your husband doing? How are you coping? I am praying for strength for you.

Childlife said...

Oh, I know... it isn't fair at all! I just know that God has special plans for Rhett though. He is such an inspirational kiddo, and whether or not it feels like it, and whether or not you can believe it right now, you're pretty incredible too. Hugs, Pam. Lots, and lots of hugs to you!

Kari said...

It's so much Pam! Just isn't fair. Your always in my prayers!

mom2noah said...

Hi Pam, we just got back from our trip to FL and I'm just floored on how things continue to twist and turn for Rhett. I pray everyday things start to improve for your family. You have been so strong through all of it. The Bird flock is so luck to have you as their Mom.
PS. Thank you for the pictures, that was so sweet of you.

Shannon @ Gabi's World said...

Whatever they decide, I hope for the very best outcome!

Sustenance Scout said...

Hugs from Denver, Pam. And prayers and well wishes and happy thoughts...! K.