Long major talk with Dr Scaife and others of the surgical team. I have been reading about options for Audrey's condition and was concerned with the traditional approaches. We are currently in a "wait and see if she grows" plan, but I needed to know typical success rates of this. If she doesn't grow her own esophagus longer in three months, she probably won't. Alternatives after that point would be a) "transposition" of a piece of intestine, or b) Gastric pull up, meaning the stomach would be pulled up into her chest and attached to whatever esophagus she has. Both approaches have very undesirable side effects and would not give her the normal life we hope for. I was impressed with an innovative surgery available in Boston, known as the Foker technique, that involves stretching the two ends of her own esophagus toward one another through tension sutures. The children's hospital there has a new wing completely devoted to EA/TEF, working to establish themselves as the drawing point for babies and kids with this condition, and we have wondered whether this might be a better place for her. Dr. Scaife has several concerns about that surgery and explains why they don't do it here at Primary. Our case is extremely rare-- our surgeon Dr Black (one of Primary's longest resident surgeons) has never seen it before in a Type C. Long gap EA is typically Type A, which is rare in itself; only about 5 in a hundred of EA/TEF has a gap too long to repair. While there are no published statistics about success rates of the "wait and see" plan, they say the majority of them do. This is very comforting, but I am still a little concerned at the lack of available numbers-- they say they see about 3 a year of the long gap EA babies. Dr. Scaife has personally performed only 3 colon transpositions, in other words, he was saying they don't prefer the method either, and don't have to do it much. It's a very difficult problem to fix, and when it doesn't grow on its own there is no perfect solution available. He has co-written a text on long gap EA, I will have to search it out. His personal feeling (generally shared with the surgical team at Primary) is that the Foker technique is extremely problematic. He said Audrey would be immobilized for three weeks while they stretched her esophagus with strings that would pull outside her body to tacked down points-- like braces, or a guitar. Misery, in their minds, and the potential is that there can be pull through points, damage to her natural tissue, excessive scarring, and too much tension in the final repair, to name only a few. However, he is supportive and respectful throughout my questions, and I don't get the feeling that it's necessarily a competitive race to keep her here. We have so much to discuss.
One thing we are urgently hoping to avoid over the next few months is the typical resulting oral aversion-- kids with EA often develop a distaste for having anything in their mouth and cannot eat normally even when their anatomy is repaired. Audrey HATES her repogal tube, always down her throat suctioning away; she gags and pulls on it frequently, and tries to push it out of her mouth with her tongue.& We've seen it be a little better when it is on the side of her tongue, which allows her to suck on the pacifier. Today a different nurse (Margaret) removed the tape over her lip and re-situated the repogal down the center of her mouth. Audrey isn't sucking on the pacifier today, the nurse had said she hasn't needed it, but we are worried this is not a good thing-- we want to encourage that sucking reflex. Everything is backwards from a normal baby-- we've never encouraged a pacifier before, but this is all so different. In essence we are anxious to teach her that food is good, that swallowing is ok, that it leads to a good feeling inside. She cries when she smells my milk, and we are pretty much counting the hours until her first milk feeding is allowed through the G Tube, but just feeling that satisfaction in her tummy is only part of the process of eating. There are smells, associations, closeness and touch, all intensely important to a baby and their development in a dozen ways. I discuss the gist of my concerns with Dr. Scaife the surgeon. He tells me of a mom who patiently "fed" her EA baby for a year by mouth, (this baby had an outlet in the side of their throat to allow saliva and food to drain) with fantastic results, they avoided oral aversion completely, pretty unheard of. Suggests the idea of my breast feeding her now and them suctioning it out, perhaps we could work out a way to coordinate it with her G Tube feedings so that she associates the two. My mind is racing... it sounds wonderful, as long as the suctioning is not too traumatic, and they warn there is a danger of her aspirating the milk... we would have to try it, but I would love love love to see it work! I suggest that I could pump right before we do this, so that there are only a few drops available by mouth. Time intensive, but it could be SO worth it in the long run. They'll discuss it and get back with me, but I am so excited by the idea!
The barium dye from Thursday's G-Tube test has still not passed from her system, which has been a concern-- but today she finally had her first bm since then and passed a lot of it out! Who knew we could get so excited about poo.
Susie's first solo day without Justin, who headed down to home to work for a few hours for the first time since the birth. Justin had to get a flat tire repaired this morning, and again we are grateful for the lending of Justin's parents' car. Susie went down in the afternoon to attend the boys' last BYU Creative Dance class, for Parent Night!
A precious evening at home with the kids. She spends the last half hour reading stories during a few minutes she designated as private time with mom for each older child. Tough good-byes. So grateful to have a travel companion, OmoLara, another mom from the Ronald McDonald House whose family lives just a few minutes south of us.
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