Tuesday, February 26, 2008

Results.......

I knew when I got that E-mail things were not good. See anytime we have tests done, I have a rule with the Dr.'s if everything is normal, they just email me and tell me things are fine. If there is issues, then we speak with the Dr. himself.

When we went into the Dr.'s office and he walked in with an anatomy book about the spine, I knew we were in for it. Rhett does indeed have a Tethered Spinal Cord.

We will meet with the neurosurgery on the 12th of march at 9 am to discuss what will happen from here. It will probably mean back surgery where they go and snip the part of the cord that is attached. As he grows and develops it can cause neurological damage, so we want to correct it as soon as possible.

Never ever a dull moment here.

We also have done alot of thinking and researching, and I think we are going to try the UPPP before the trach. Our ped agrees that it will give us the best chance at trying to give him a normal airway. If he still has to be trached, then fine, we will deal with that when the time comes. I am feeling better about things.......for today anyways.

So far here is our agenda for surgeries in the next few months.

  • Still go in for the upper GI on the 3rd, and meet with the general surgeon who will ultimately decide whether or not he will have a nissen done.
  • Then we need to decide what needs to be done first............
  • Nissen/G-tube
  • Heart Cath
  • UPPP
  • Or Spinal Surgery
I am voting for the spinal surgery first, as it seems to be really important to get this done before neurological damage occurs.

Hopefully we will be able to combine some of them, although every time I talk to his cardiologist he seems to think it will be too much stress on his heart and lungs to do two of these major procedures at once.

He is even hesitant about doing a heart cath on him.

This is all just so incredibly overwhelming. Sigh.

13 comments:

carolyn q said...

I am just overwhelmed myself by reading all that was found out. It has amazed me that with all that is going on with Rhett, one thing is for sure. . .HE ALWAYS has a SMILE of his face. What a lesson for the world. He truly is an amazing kid. Hopefully I can get with you soon to visit :0)
Keeping your family in my thoughts and prayers.
Hugs,
Carolyn

~Melissa~ said...

That IS overwhelming. I'm sorry that you have another surgery to deal with. You are in my continued prayers.

The Bryant Family said...

WOW, my head is in a whirlwind with it all. He is such a cute kiddo and you are so on top of everything, hang in there. I will continue to have you in my prayers. I am so sad that there are so many things that your family is dealing with, I wish I had a magic wand. Oh yeah and that money tree!

Niksmom said...

Oh, Pam, I don't know that I can say anything that will help except that I am constantly thinking about Rhett and he is in my prayers. I cannot begin to imagine how overwhelming this all must be. Sending you love and prayers and positive thoughts of healing and growth. xo

Marla said...

Hugs. I am about in tears reading this. Little Rhett so needs a break.

Mommy to those Special Ks said...

Ugh, I'm so sorry! We found out today that Kennedy needs spinal surgery too for her AAI. Too bad we're not closer and we could have Kennedy and Rhett go together! We're praying for everything that Rhett has coming up!

Emily said...

Oh dear... I am so sorry to hear this news! It is overwhelming and so unfair that Rhett has to go through so much! I think about Rhett all the time and so wish for the best for him. He really melts my heart.

Many hugs and prayers to you Andy and Rhett.

Michelle said...

Oh man. Rhett deserves a break - how overwhelming. Rhett is in my thoughts - and so are you. I wish I could do something for him.

Please give him a big hug from me & Miss Ru!

Mrs Wibbs said...

Oh Pam! What a lot to take on board...I'm not surprised you're feeling so overwhelmed!! Thank you for updating us so faithfully and specifically; I will get on my knees and lift you up to the Lord, who knows what you are going through as a mama and as a family. This is tough, but God has a habit of turning bad into good. Somehow.
All my love, prayers and hugs

Childlife said...

Prayers, Pam... lots of prayers from our family to yours. Just take it moment by moment and hang on tight. Love to your whole family,

Michelle @ In The Life Of A Child

Kari said...

I'm so sorry Pam you must be so overwhelmed! Keeping you and your sweet boy in my prayers! (((HUGS)))

Damama T said...

Hugs and prayers.

maryk119 said...

Pam,

I just learned of your story and your overwhelming struggles from my sister's blog site, Beyond Understanding. Words of encouragement seem terribly inadequate but I at least wanted you to know that Rhett and your entire family have been added to our prayers. May you find strength in each other's love and faith. God Bless...