update

May be longwinded, I apologize.

Starting back at Tuesday with the G-tube surgery. Originally, he was to have both the G-tube and the trach placed during one surgery, so as to only undergo one general anesthesia. However, Malachi had other plans. Shortly after they finished with the G-tube, Malachi's blood pressure dropped significantly to where his systolic was in the 40s (so like 40/20). The surgeon brought the videoscope back in to look at the esophagus and abdomen and could not find any reason that he may have caused for his BP to drop like that. Because of all this, surgery had be completed the next day after he proved to be stable. I was very thankful that Dr. Rescorla didn't want to push him and just get it all done while he was in the OR. He knows how fragile Malachi is.

When I got back to Malachi's bed, there was a nice gathering of nurses. I took a look at his little belly and was immediately grossed out just thinking about how that tube just goes straight into his abdomen. Then I could see the drainage, gross and colored drainage, coming in and out through the tube. I had to go sit, preferably in the room but away from the bedside so as to not completely pass out.

His hematocrit level was also low, so he needed to receive a transfusion in order to be ready to go for another surgery on Wednesday. This meant that he needed another IV. Because of his BT shunt placed during his last heart surgery, they are not supposed to put an IV in his left arm. Malachi already has slim pickin's for good IV spots, and this doesn't make it any easier. About and hour, three nurses, and six sticks later (2 in the foot, 2 in the arm, and 2 in the head), they were able to place a decent IV. I shouldn't have watched them try to do this. Needles make me queasy, and seeing them go into my babe's body is no fun--especially when he is writhing in pain from surgery.

I hate to see him hurting like that. I kept asking if there was any more pain control or sedation type meds that he could have. The NP ordered for more morphine on a regularly scheduled basis. It seemed as if we were trying to play catch up and couldn't quite get ahead of his pain. Heartbreaking. In the middle of all this, he went back for surgery to finish and place the trach. This not-quite-enough pain control continued into the evening and into the morning/early afternoon of Thursday. With a couple additional doses of Ativan, we seemed to have caught up with it (although, he would get VERY agitated and fidgety about 10-15 min before he was able to have another dose of anything).

He has been requiring additional calcium and potassium supplementation due to the electrolyte imbalance he battles. His ampicillin and gentamicin antibiotics were finished yesterday. They did have something begin to grow in his urine culture, so diagnosis was a UTI. There were traces of E. coli and klebsiella bacteria. Hopefully, the antibiotics took care of the problem. There may be a correlation between his ampicillin and the horrible rash that he had. Just something I need to remember. They are checking a phenobarb level (from seizure meds) to see if it is something where we can give him a chance to prove to us that he doesn't need it. I said I would prefer taking him off the med while we are still in the hospital under 24 hour supervision. Pray that his level was below therapeutic and that he will get that opportunity.

I guess this morning he was having some extended periods of time with heart rates in the low 200s again. He was in this state when Cardiology rounded, so they went ahead and increased his atenolol a bit and they want a digoxin level to be drawn before the next dose of that to see if it needs to be increased as well.

The restarted his feeds yesterday at 20 ml. (He was getting 82 pre-surgery). They were then increased to 40 ml and today he is getting 56 ml. He has become a HUGE kid. He's 6.2 kg (for the rest of us, that's 13 lb 10 oz!). I think its getting to the point where we can cut back on his calorie intake and let him grow like a "normal" kid instead of beefing him up, especially since there aren't any immediate surgeries in his near future. The nutritionist will be around again on Monday, so hopefully we can get that straightened out.

Here are a couple vidoes of his G-tube and trach.