This visitor (she's a robin and eludes the camera) and her fledglings inspired me to celebrate new life and renewal. It took some time but it is in times like these that one puts some serious effort into turning my attention to the forward-moving strides we've all made. Like I've said before, we have in fact, been officially approved to receive twenty-five hours of nursing respite care during the week and an additional two hours per day in personal care (or we can use these hours how we see fit). We have hired someone to help us and are awaiting the state to officially put her on the payroll so she can start. Yes, I am patting myself on my back. But that is what I need right now. What changed you ask? Everything and nothing. Thank you to all of you for your support- it was very comforting. Your feel-well wishes worked!
We went to see Dr. Surgeon last week. Had speech therapy on Tuesday followed by infant massage class and then the nurse came on Tuesday. And we saw Dr. Opthalmologist yesterday. PT, OT and a massage therapist. Phone calls to interview people. Phone calls to feeding specialists and case managers to quiz them on what the best plan of action should be. We haven't slept a full night sleep in over six months. Long story short we're exhausted:
Noodles' eyes haven't improved and he does need surgery but we will continue to patch both eyes for now. Since his stomach is the priority right now, the eyeballs are going to have to wait their turn- probably in June. But we're gonna patch the good eye two days in a row now followed by the bad eye one day and repeat that pattern the rest of the week.
Dr. Surgeon has ordered an upper GI study which we have scheduled at Children's Hospital second week of May. He wants to gauge how big LJ's tummy is, the location, condition of esophagus et al. He thinks there has been sufficient time between the last operation that it has had enough time to heal. There might even be potential for minimal scarring in which case he could attempt to do the G-tube procedure (tube in the stomach wall). In an ideal world, this would be the case and he would be able to go through LJ's existing incision but we'll see. The worst case scenario is he can't see well enough because of the scar tissue and will have to place a J-tube (tube in the intestine). There are many downsides to the Jtube, for instance Noodles would have to be on a continuous feed and hooked up to the feeding pump at all times. Another negative is he wouldn't ever feel hunger. None of this allows for any sense of normalcy. The one upside is that it would eliminate the retching syndrome and any related reflux.
We've spoken to many feeding specialists who all feel the NG tube is no longer a viable option.
More on the NG tube...everyone's concerned again with LJ's weight gain. None in the past three weeks. That combined with his oral-feeding regression points to the alternatives. We're still playing with the right formula for adding calories to his milk and obviously we still haven't gotten it right. Yet, the pros feel we won't make any progress with his sensory issues if we have all that tape on his face and the tube is still causing discomfort in the back of his ear, nose and throat. So we're most likely looking at abdominal surgery in May.
I was trying to coordinate as much as possible at the same time so that we only have to put Noodles under the once. But Dr. Surgeon and Dr. Opthalmologist both are extremely wary of anesthesia contamination and therefor won't do it. It's just too dangerous. So it appears he will have to have anesthesia twice. But he does need another MRI so hopefully we'll be able to schedule that at Children's Hospital before the G-tube surgery.
What does the future hold? I wish I knew. Anybody have a crystal ball? I will do whatever it takes to make my little man get healthy.
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