Tuesday, March 4, 2008

We Have a Surgery Date Set........

Rhett goes in on the 21st of March for his UPPP surgery. We will be in the hospital for 5 to 7 days, and in the PICU for at least 3 of those days.

If Neurosurgery decides that he needs his spinal surgery done before the UPPP then this will change, but for now that is where we are headed.

We had a rough time deciding between the trach and the UPPP, but after it was explained that he would probably have to have the UPPP anyways after he got older before the trach came out, we decided to try the UPPP knowing that he may need a trach anyways. Either way there is a possibility of both situations, so it was a tough decision.

We went up to PCMC yesterday for his Upper GI, and it showed that he had moderate to severe reflux. But when we went up to meet with the surgeon, his PH Probe results still weren't anywhere to be seen. Come to find out they hadn't even been read yet. So we still don't know if he will have the Nissen or not. We are supposed to get a call today.

I was so frazzled yesterday with everyone in the hospital, they all seemed so unorganized. Rhett wasn't in the computer or on the schedule for the Upper GI, so they had to fish around for the orders, then we had to wait 20 min for them to squeeze us in.

Then I told them up front that it would be best to put the barium in through a tube, but they said they were going to try a bottle first. So they sat there and squeezed it into his mouth, it took 5 of us to hold him down, and he sat there and screamed his head off, and bathed everyone in barium. Finally they put the tube down his nose and did it that way. What the hell happened to mom knows best? I just sat there and shook my head. I wasn't going to get into the "I told you so speech."

So then we go up to the surgeon's office, and wait for another hour and a half for her to see us. I am chasing Rhett all over the hospital, because his stroller broke, so we don't have one anymore. He just kept running all over, and I was so tired of chasing him. I can't tell you how many times he fell, because he was getting out of breath and was so tired. He has a huge rug burn on his forehead and a black eye. He also has a bruise on his hip from being held down and fighting so hard to get away.

You can't tell me this kid has low muscle tone when it takes 5 people to hold down a two year old. Anyways all that waiting to find out that we can't decide to do surgery until we get the PH Probe results. Of course the Dr. hurt her leg skiing over the weekend, and had her own Dr. appointment to go to, so we get thrown out of the office, with a "Oh, I'll call you sometime tomorrow after we have the results and I know what is going on."

She didn't answer any of the questions I had or anything. She just handed me a instructional sheet on a Nissen. So now we wait. More.

I was so mad and frazzled, and upset by the time I got home. So the news that Chloee won that contest was very welcomed. It made my day a whole lot better. They called about 5 min after we walked in the door.

I sure hope our appointment with Neurosurgery goes alot better than our one with General Surgery went.


Niksmom said...

Oh, I am so sorry that it was such a miserable experience yesterday! Sounds like they didn't know what they were doing. I no longer listen when techs tell me "Well, let's do it this way first..." I put my foot down hard and fast; Nik doesn't need the trauma and upset and I sure don't need it either. (I guess what I'm saying is "Don't be so nice!" There's a time when it's OK to be the B**** mama!)

Keeping you all in my prayers. xo

Marla said...

That really upsets me that they did not listen to you. So typical though. That happens to us all the time. I always explain we have had something done a certain way that works better and stubborn nurse insists she knows best, only to put M through extra hell. Infuriating. I am so sorry that happened. I am sure that was so difficult to watch. Poor Rhett.

I am glad the surgery is scheduled. As always...prayers and hugs.

Childlife said...

Oh, I HATE it when they refuse to listen to you about your own child! We had a radiologist that tried to insist on doing the same thing on one of our upper GI's... still makes me mad to think about it. We always have issues with phlebotomists too. I never let anyone near her to start an IV that isn't a certified IV therapist or a pediatric anesthesiologist and bring my own heat packs because they never seem to have any. You would think at some point they would learn to listen. Hang in there, Pam... you're doing an incredible job! Lots of prayers...

Shannon @ Gabi's World said...

I am hoping it all goes smoothly!

One thing I learned when I worked in the PICU is to listen to the parents. Who better to know the child. Sorry they are not listening to you.

LeeJo said...

Oh my. We did the "try the bottle" with Ben's upper GI too. I hear your frustration. Keeping you in prayer during the upcoming surgeries!

Damama T said...

Hi sweetheart. I'm sorry they put you through the wringer. AGAIN. Does that place have a patient advocate? Most of the hospitals here do. It might be worth checking into. The advocate's main job is to make things go smoothly for you; to act as a buffer and a cushion so things aren't quite so hard all the time. If there's no advocate, I'd go straight to the chief of surgery and request that one primary nurse be charged with Rhett's case so that s/he can be well informed.

You do such a great job of dealing with all this crap, Pam. You are amazing. I just wish I could be there to be your advocate - and kick some serious butt in the process. xoxoxo