Thursday, July 30, 2009

More swimmin

Hi friends, first I'll update on Jax. His ped talked to neurosurgery and his ENT about treating the symptoms were having from the SVC blockage. Of course, still no word from Boston, so we need to be ready if they say no, because his symptoms are getting worse. His airway issues he's having we think are from all the fluid in his lower face putting more pressure on his airway. He still can't have his tonsils and adnoids out because of the bloodthinner issue, so we may be going to c-pap at night. Yah (sense the sarcasm?)
And the only way to treat pressure in the brain is by putting a shunt in. Nope, no way, not going to do it. To me it seems more logical to fix the SVC than all this crap. She still thinks the SVC surgery is going to be to risky. I say let me decide that if Boston ever calls. The shunt would be a huge surgery, infection risk, not to mention another foreign body in his head that he can clot on. So we have lots of appointments coming up. Cardiology, pulmonology, vision. Whew.
Here's some pics from Tuesday night. My sisters went home yesterday. Ugh, I miss my nieces already.

My nieces checking out Sadie's birthday cake. Sadie is the older one.

Evie giving me her evil eye.

Thanks for all your sweet comments on my last post. I was so upset about this baby dying. Here's a couple of blankie kids. Of course I don't have them up on the blankie blog yet. I'm a little slow this week.


Denise said...

Poor little Jax...he is so lucky to have you as his advocate!!! So, where is that pool? Is it a neighborhood pool that we might get to swim in while we are there???? I can't wait for our BBQ. We are still waiting to hear back from my father in law so we can make our final travel plans.

Michelle said...

It is so good to see Jax in the water. I bet it is so relaxing and theraputic for him! Keep the faith girl...the Lord is watching over your family...all will work out!

sturpin said...

I can't understand Boston's delay. And I agree, you are an awesome advocate

Trina and Jophie said...

Ahhh fun in the sun and the water....Sweet sweet bliss! ;)

I'm follow another blog girlie and they are also waiting on Boston.....Little guy is in PICU and plans have been made off and on to send him by air ambulance but no go yet....Maybe its a Boston thing? OR maybe they are just that good and overpacked with patients....

Hope your having a good one!

Trina and Jophie

The VW's said...

Cute pictures! I love seeing Jax in the pool! He looks so relaxed!

Your nieces look a lot like you! What cuties!

It must be so frustruating having to wait for Boston's decision! UGH! At least, then you could start deciding what to do! I pray that you hear something soon!

Love and HUGS!!!

Kristin said...

I'm so excited - I won your blankie on Lily's birthday raffle!! I'll send a picture for your blankies site when we get it :)

Emily said...

I am so glad Jax was able to enjoy some time in the pool. Sorry your family visitors are gone. That's always a bummer. I hope this BBQ happens! I can't wait to see everyone!

stephanie said...

Jax looks so happy in water. Boston is freakin unbelievable!!
Your nieces are adorable! It must have been a great visit.

Angi said...

Looks like Jaxson is liking the water. He looks so calm...Praying for an answer from Boston...things will happen for you, just keep the positive thinking:)

Kristin said...

Our cardiologist is Elizabeth (Tess) Saarel. I wasn't so impressed the first time we met her, but liked her more today (mostly just because she's not going to make us wait any longer)

Sophia said...

That lokks a lot like fun!

Tiff said...

I hope they call you SOON!!!! We had a wonderful visit with the Hypertension Specialist. We will be keeping her care there and going back and forth from Boston and Little Rock for follow-ups!

We stayed at the Devon Nicole House (which is associated with the hospital). It was $30.00/night and within walking distance (3 blocks) from the hospital!

Hugs - Tiff