More Uncertainty - Friday Oct 24

When we look too far past the present, in this sort of situation, the range of unknowns becomes overwhelming. We took this lesson to heart almost two weeks ago - Jenn and I stick to thinking about Lewis' condition today and we don't get past our hopes for tomorrow, and things go okay. Unfortunately, today's 'family meeting' with the NICU neurologist forced us to move outside that manageable window.

The neurologist's prognosis for Lewis is "very guarded". Physically he felt that Lewis has made progress, but still thought that he was 'hyperexcited'. The MRI showed lesions on the part of the brain called the Basal Ganglia. Apparently it is difficult to differentiate the severity of the lesions at this stage. The Doctor explained that this portion of the brain regulates communication to/from the rest of the body. He expects that Lewis' "degree of deficit could range from moderate to quite profound" and that we should expect that he will require "comprehensive services" to include physical and occupational therapy and a bunch of other stuff that I didn't catch. He wasn't really willing to define "moderate" or "quite profound".

Though he shows no signs of seizures right now, they'll keep Lewis on the phenobarbitol until he outgrows the dose, rather than lowering it. That should equate to about 4 to 6 months. The next MRI will take place in 4 to 6 weeks, which may tell us more.

Respiratory - today was the first day that the doctors referred to the infection Lewis has as pneumonia (at least in front of us). This isn't as big a concern as one might think, since Lewis has been on the appropriate antibiotics since last Sunday. It isn't hard to see how he got fluid in his lungs, since he still isn't managing his secretions (swallowing). On the bright side, he is breathing just fine without any support (other than occasional suction to remove the junk he doesn't swallow) and coughing more - which helps protect his airway.

Feeding - up to 24 ml/h of milk today, which is a full diet, so Lewis has been taken off of IV nutrition. We also learned that his NG tube is in his duodenum (below the stomach) which is why they think he's had fewer digestive problems recently. They may challenge him by moving the tube back up to his stomach, but that's a ways away.

Speech therapy - the therapist spent about half an hour showing us different ways to work with Lewis on stimulating his rooting and sucking behaviors. She feels that he's made some progress this week, but I didn't write down all the details, so that's all I can tell you.

The plan over the next week is to intensify all of the physical therapy and treat the pneumonia. If Lewis doesn't make progress on sucking and swallowing, it is very likely that they'll perform a Nissen Fundoplication and put in a gastric feeding tube, so that he can come home more quickly.

I just reread this post. The part about the neurologist meeting sounds awfully negative. I understand that the docs can't see the future any better than the rest of us. Their task, when informing parents, is just about impossible. I'm not angry with them, or trying to "kill the messenger" - it just seemed to be the best way to convey the tone of the meeting.

Lewis is sleeping peacefully at the moment and apparently threw quite a fit when the nurse woke him up earlier, including audible crying. Nice work little man.