surgery is scheduled

Just to make a very long story pretty short, Kade's surgery is scheduled for Tuesday.  We were informed via MAIL, not call or in person communication.  We have asked every day for two weeks and they kept saying that they didn't have any new info. Well, apparently they had enough info for the Scheduling team to send me the paperwork via SNAIL MAIL to fill out for him to have the surgery.  We were beyond livid. This was UNACCEPTABLE.  As I said to them, we are not the mother on the street that comes to visit there baby once in a blue moon and could care less about his care....we are there every single day from 2-8 or more hours....why in the WORLD is this ok to find out about a major surgery that my child is having thru the mail. it isn't ok for ANYONE to find out this way.

To add insult to injury, I waiting by the phone all day for the neo to call me and she never did. She wrote in the chart that I didn't answer....Do you know how high my blood pressure got??? Let's just entertain her idea that I didn't answer (which is not true), seems like you would have 1) left a voicemail or 2) called back considering he is now set for major surgery and you are changing his whole regimen of care until then.  UGGHHH

Sorry, I am just so frustrated and stressed tonight. The thing staring us in the face is that this will be the rest of our lives....dealing with doctors, surgeons, nurses and always relying on someone else to help us out to "heal" Kade and explain to us what is going on with OUR child.  Just so surreal still... As I told the nurse, we have been here 15 weeks tomorrow...saying that is just nuts, especially if I say we have been here since October!!! That sounds nuts!! I really think your body just takes over and you just get in the motions.

So, enough of that rant...as far as Kade. He was so precious today as usual. He played a lot of the day between the mat, his swing, etc.  He had a great day.  We are all eagerly anticipating the removal of the bag on Tuesday. What they are going to actually do on Tuesday is reattach his colon to his intestines, so instead of having those two things out his stomach and the bag, they are going to fix everything back and reconnect. They are all possibly putting in his G-tube  (permanent feeding tube).

Today, they decided to increase his TPN and give it to him 24 hours instead of 18 and then lower his feeds a little. This is all with the intent to gain weight prior to his surgery. I am been crossing my fingers so tight for his liver, but they assure me we are ok right now....this will be a very very stressful week. This surgery is just as major as the bad surgery he had. The only difference is that he is well for this was and was super sick for the first one.So, please say extra prayers for us. We need extra healing and prayers because this is what we have been wanting to happen to move forward, but also what we fear like crazy...just hate more surgery

Have a good night!
xoxo
G

P.S. say a prayer for the first doctor I run in to tomorrow, because he is going to hear this mama bear and papa bear is more pissed that me.