Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Surgery, Baby UPDATE

on August 22, 2013

Agnes’ surgery yesterday went well. Of course Jeremy and I were nearly sick with anxiety, but each of the surgeons promised their piece of the ordeal wasn’t that complicated. We were just nervous because Agnes was getting two procedures done at the same time. We spoke with the anesthesiologist before the surgery because Agnes was labeled a “difficult intubation” which they always take very seriously for the rest of the patients life. The doc promised us he would use the more intense intubation tools first, and that he would come see us in the waiting room to let us know the intubation went okay. It is a super horrible awful thing for an intubation to fail at the beginning of surgery. So we waited for him, and he never came. We were really restrained, but I think Jeremy would have chewed off his fingertips if he happened to be a nail biter, but he’s not. Of course, I had to use the bathroom and when I came back out, Jeremy was talking to the general surgeon who had done the g-tube installation. He said nothing went wrong, everything went wonderfully, and Agnes could use the g-tube the very next day for feeding. So that was all good.

The ENT surgeon was next up with the trach. His part of the surgery didn’t take as long as the estimate we had, so we felt good about that as we waited in the consult room to speak to him. He never came. We were only mildly alarmed because we’ve had to wait for him before. Finally, a Child Life person took us back to the PICU to see Agnes since she had information that the ENT had already seen Agnes at the bedside. I guess as soon as we left the consult room, the ENT surgeon went to find us. Oh well. We did get to talk to him on the phone, and I saw him this morning early and everything went fine. He said the trach was easy to place and now we just have to wait for the incision to heal and see how it works.

Agnes did pretty well overnight. She had a number of minor desaturations throughout the evening and overnight, but usually she popped back up to normal levels without any help. A few times the nurses needed to suction her trach. Agnes was on a pretty strong dose of morphine overnight, but this morning they started phasing her to tylenol so she can wake up a bit and start to breathe more on her own. They did put her on a ventilator right after surgery to give her support while she is sedated and still getting used to breathing with the trach. She had started to trigger her own breaths this morning, so they reduced the settings on the vent and she did well with that. In a couple days or maybe even by tomorrow evening, she should be ready to try breathing totally on her own. The PICU docs don’t want to rush it. She has to be in intensive care for a week anyway, so there’s no hurry to get her off the vent.

Before I left the hospital early this afternoon, they had started to give medication through the g-tube with plans to start some clear liquids. Hopefully by now she is getting some real feeds through the tube. I will find out when I go back this evening.

I have to say, seeing Agnes with the trach is really freaky. She look so different to me, and it breaks my heart to see that collar around her neck and that crazy appliance right on her throat. I’m sure I will get used to it, but for now it makes me want to weep. This surgery really upset me on a deeper level, too, which I know because I had the most horrible nightmare last night while I was sleeping in Agnes’ hospital room. It was a horrible surgical/medical nightmare about Agnes and when I woke up suddenly, I was so upset that I bolted over to Agnes’ crib to check her out. I really freaked out the nurses. They were like, “Are you okay? Did we miss something?” They got me some ice water. Gosh, I hope that doesn’t happen again!

Jeremy and I haven’t started the official training for the trach and g-tube yet, but I have been watching closely any time the nurses do stuff, and I’ve been asking questions. Hopefully the training isn’t too overwhelming. Everyone seems to think we will do fine and become pros in no time.

I can’t wait to be able to hold Agnes again and snuggle her and reassure her. She looks scared to me when she has been more awake, and yesterday her eyes were leaking little tears as she lay there. I don’t know if she was crying or not, but it was sad to see. I can’t imagine what she must be feeling and I just hope she isn’t in much pain.


2 responses to “Surgery, Baby UPDATE

  1. JeneaSwainston says:

    Oh, Judy and Jeremy, my heart aches for you and Agnes… It must seem that you will never get back to just living again but someday this will be a memory and Agnes will be bouncing around getting into things. Praying always for comfort and healing for you all…

  2. woodra01 says:

    You, Jeremy, and Agnes are in my thoughts and prayers. As always, Charlie and I send much love. No one ever told me when Charlie was readmitted but I wish they would have… it’s OK to be sad, scared, angry, or whatever else you may feel. It does not mean you are weak or anything of the sort… it’s par for the course.

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