I had a bit of a day really.. lots of up and down of emotions. For about 2 hours I was a weepy mess and then started back up for air. It was while sitting in the waiting room for Sam to come out of the OR from his JG tube upgrade procedure that I started to feel.. done in. By far this was one of the simpliest procedures yet.. except that every time they do anything on him they have to put him under General Ansthesia and intubate and it scares me a bit that he won't wake up or will have his more serious episodes or something. I am always alone in the waiting rooms as Jason can never be here due to work etc.. and these things are never scheduled on weekends when there might be some chance of him being with me.
I think I was mostly upset because they had told me he would get to avoid the anesthesia and then we get down there and they said..no way. He had to be fully under as he can't handle the gas and needs the MH precautions and has major problems with the LMA tube. So it had to be the full deal. Anesthesia is always the big issue.. not the surgeries or procedures themselves..like the fundoplication surgery where they wrapped his tummy around his espophagus.. scarey image but the surgeon said our biggist issues were airway concerns and heart rate and anesthesia. Then after that surgery ended in major major episodes and him being coded several times, and we realized it was the intubation making him far worse, I think I got gun shy of the anesthesia and intubation. So they say he has to have what they call TIVA (total IV anesthesia) due to his issues. He did great though this time and it took about an hour and a half.. nothing compared to the 16 hours I would sit for mom's surgeries in the agony of endless worry.
One procedure at a time is what I keep telling myself but after having to go into such a detailed history for the umpteenth time with the anesthesia and radiology people, I was remembering too much from all we have experienced and then thinking far too much about the future and all of a sudden I was overwhelmed and a blithering mess. Most of the time I think I am pretty good at just focusing on the situation at hand and staying in control of the emotional stuff..Jason is far better at it than I. I try to leave my weak times to when I am in prayer because God understands. I am not sure the others in that waiting room could understand why this woman in the corner who has had like no sleep and looks like she was run over by a truck this week is sitting there tearing up every time she takes a sip of her coffee. In saying my prayers for Sammy, I found some peace and calm and before I knew it they were there to bring me back to see him.
My son is such a little fighter. When I got to his side in recovery, he was purring like a cat and waking up in such a vulnerable way. I love that he vigilantly seeks out my eyes and seems to plead to me in only a language I understand. In a few little nods and blinks, he asks me to hold him unlike any other baby... no arms flinging out or howling mommees..just a locked gaze and coo meant just for me. The nurses always tell me over and over.."He is sooo good. I can't believe he never screams or even crys out." He just purrs and moans softly to me. That is his way. He knows by now that crying out and making a big fit of himself will only steal precious energy. I felt alot better seeing him doing better and the rest of the day has been an improvement except for some tummy aches. He is wanting to go home, as am I.
As for the procedure, they had not only fished around in his insides with a metal wire to thread down the intestines but had also dilated (substitute this nice medical word for stretched out bluntly) his stoma (the hole leading from the outer tummy to the inner wall of his stomach.. why did he have to be put through that pain? Because they did not happen to have his size in stock. His size of gj- tube that is..I was NOT happy about this news. He is a 14 french and they only had an 18 handy..so they made a 14 hole fit their 18 tube. I was also NOT happy when I found out this hospital does not carry the nice button version of the GJ tube like his old G tube which was so easy to conceal and "low profile" as it is so named that it does not interfere so much with movement and tummy time etc..The new GJ tube is huge and similar to the first starter G tube we had way back in may for the first 6 weeks. It has a long tube attached that can't be detached and is impossible for putting meds into and is FAR easier for Samuel to play grabbies with which could lead to him pulling it out, requiring a repeat of this OR procedure. It is not like the G tube we had where we can put it back in ourselves.
So for now..Sam is supposed to be sleeping but is instead peacefully blabbering in his crib sweet baby sounds and blowing sweet baby bubbles while I type this and hopefully he is ready to get some shut eye. I a, really hoping we get to go home soon.. hopefully tomorrow.