I got to realizing ... I have been telling a lot of the facts, figures and data of what is going on. People are starting to ask questions about the procedures and why and what's the big deal. So here's an attempt at that.
Manny cannot eat by mouth because things go down his lungs and not down to his stomach. So if you do a gtube it bypasses the airway and no way for it to go down into the lungs. What's the big deal? If it's saliva, it can be reabsorbed into the body (assuming it doesn't get infected, etc.) and too much can cause pneumonia. But if it's food, it can be lethal. So nothing per oral. NPO.
Recently, he has been having troubles and we know that PART of the story is that his stomach has completely stopped working. Food just sits there. NEVER empties. That's dangerous. So they will do a procedure where they go in and reroute the tubing. It will no longer go into the stomach, it will go to the jejunum (intestines). It should help him stop retching and having pain.
They are working under the theory that all the other problems he's having is due to the stress on the body. They hope it will make all the other things fall back in line.
I think I should sell his masterpieces ... Manny originals.
And how do I FEEL about this? I'm not liking it at all. It's quite frustating in fact. Why? Because we had hoped that Manny was getting BETTER. That he was getting stronger and able to eat by mouth some day. We hope to see him eat real food.
But this? This is a huge step in the wrong direction.
And it's hard to take.
Worst thing in the world? No. But it's just not the direction we were hoping for.
This week we were reminded in a powerful way that we were indeed dealing with a very special needs baby. Because the other working theory is that his white matter (that is basically all gone) has completely stopped working and all systems are shutting down one by one. He looked like he was having multiple organ system failure.
So rather than talking about my feelings or thoughts, I'm simply sharing the data.
OK more data.
4:30 GI walked by my room with the door open. She had a banana in her mouth and quickly said that they have decided to hold off on the surgery. She wanted him reassessed and a few more tests run. They are going to have to put him under because they're going from a certain size tube to a bigger one and that will hurt. They dont' want it to over stress his already partly damaged (but recovering) heart. So ... the surgeon voted on waiting. She even mentioned that she wants Cartaya to run a head CT to see if he has sinusitis since he is so congested, keeps running a fever, etc. That's not my opinion but Cartaya will sort it all out.
Either way, I consider it an answer to prayer. I asked for HIM to make the call about sedation or not and the timing. He said no to today. So I feel at peace with the decision ... even if it means us being here a day longer.
How about that cutie blast from the past pic for those who are just getting to know sweet Manny baby
6:20 Cartaya just left and again feels he is "all clear" for surgery. So likely tomorrow? But who really knows around here. Things go very, very slowly around here and then WHAMO ... fast.
9pm, we were taken down to xray for a chest and sinus xray. Wish I could have taken my camera in because they had him strapped down and I was like, "You do know he can't move, Right?" Just precautions. So I told him it was going to be a picture and those straps were there to squeeeeeze him. So sure enough, he didn't even cry. He just layed there (before the straps) and as she put them on, I said, "Squeeeeze" with each one and he repeated. Had the tech cracking up at him. Then he laid there very still as he said "Cheese".
On the way back, I was talking with the tech and she said where she was from which led to why she was here and she said, "I came with my mother 15 years ago and she died a few nights ago." No way! THIS is the tech that I heard wailing the other night as we were waiting for the nurse (he was desatting bad). God gave me the chance to speak into her life tonight. To say a few words which I hope might bring her comfort. How crazy is that? She doesn't know that I even knew.
Meanwhile, I'm also continuing to get to know a respiratory therapist who is very nice. A 60 something Black lady. She said she is blessed to have met us. (And then tonight one tried to hock her wares on us as were her captive audience ... where else can we go? Weird. Glad she's the night one ... I'll be asleep all the rest of the times she comes in.
Manny's watching a Little Einstein's DVD ... hope he sleeps soon so I can head to bed too. Because who knows what tomorrow brings!