Friday, February 13, 2009

Evening Update (Friday 2/13)

Max and Carolyn had a great day together, and Max seems to be getting on top of his feeding. We also got some good news from our insurance company (more on that below). But no day in the NICU is one of simple happiness. This otherwise marvellous day ended with a reminder of just how many problems Max faces. After yesterday's hydrocephalus panic, the head phrenonologist dropped by to see Carolyn. He examined Max and found many subtle clues pointing towards intracranial pressure; he pronounced Max a "borderline" case for a shunt. My theory is that the phrenology service carry a grudge against Max for slipping out of their clutches last year. Carolyn was worried about the specific issues raised by the surgeon, but mainly she was overcome with the realization that Max will probably have CP to some degree or another.

That said, Carolyn has grown into an experienced NICU parent and has the courage to face all sorts of crises with a cool head. Because of various staffing problems, the step down NICU was overseen temporarily by a nurse on loan from the pediatric ward. Max was snoozing in his favorite position: his face firmly shoved into Carolyn's armpit and his arm around her neck for support. As usual, he had managed to work free several of the leads that measure his heart rate, breathing and oxygenation. His monitor was sounding all sorts of alarms. The peds nurse rushed over and said "clear his airway! reposition him!" Carolyn simply jiggled his leads back into position and the monitor stopped complaining. This appeared to placate the nurse, who remained somewhat shaken. The NICU is no place for the easily frightened.

Carolyn and Max played a bit, but for the morning Max mainly slept. He handled his feeds extremely well, including the dreaded vitamin feed. When he was awake, Carolyn read to him and did some physical therapy. He was very calm and alert, staring at Cj as she described our evening's activities yesterday. Carolyn told me she thinks Max is developing beautiful eyes.

In the afternoon, Carolyn thought to give Max room to move his legs around on his own; this required temporarily rearranging his crib. She took out the wedge: this is the inclined plane that Max rests and sleeps on. It has a basket to keep him from rolling to the bottom of the crib. But the wedge basket also keeps him constrained so that can't move his legs. With the wedge out, Max was lying flat in a normal, open crib. Max loved it, and he and Cj played for almost two hours. Max mauled his star, looked at the pictures in the crib, checked out the elephant mirror, all the while waving his arms and legs around. Carolyn noted that he seemed a little stiff, a sign that his muscles are unnaturally tense; this is a common neurological problem.

With his 3:00 PM feed, Max went off breast milk and started his elemental diet. The NICU team will try this for a while to see if Max's reflux is related to some kind of milk allergy. In practical terms, this gives Carolyn a window to consume all the dairy products that had been forbidden her. She is eating cheese and drinking milk at an unnatural pace.

Sainted nurse B. came at 5:00 PM (two hours before the normal shift change), so she and Carolyn got to spend some time together. B. unhooked Max from his monitor leads and carried him around the NICU like an untethered astronaut. One of the other nurses accused B. of being in love with Max, a charge she happily plead guilty to. B. told Carolyn that as word spread that he was to be turfed to HSC, he'd had a steady stream of visitors.

But Max may not be moving to HSC; our insurance company reversed its earlier decision to retroactively deny coverage for Max's stay in the NICU. In addition, they've agreed to let Max stay at Georgetown as long as he needs to. As reported to us by Dr. S., the fearsome head of neonatology, the insurance company confessed that it "hadn't realized how complex Max's case was." Is this good or bad news? Because we haven't changed our view of Max's condition, it's only slightly sad that a third party agreed he needed continued intensive care. The Georgetown NICU team may or may not recommend moving Max to HSC if a bed opens up in the next few weeks; we're not completely sure what goes into their decision. In addition, the new verdict lifted an enormous potential financial liability. A month or more in the NICU costs a sum of money that doesn't make sense on human scale. It's not a number one encounters outside of the business section of the newspaper, usually as part of the sentence "GM Posts Record Loss of $XX".

However, we had been looking forward to HSC's vaunted intensive therapy. Max saw only one therapist last week. Carolyn asked about this, and, in response, Dr. R. gathered the therapy team together. They agreed that, as an older, bigger baby than they're used to seeing, Max needs more and longer visits. They committed that between the three of them, Max would get four or five visits a week.

Finally, Max made Cj a card for St. Valentine's day. Those are his actual handprints!

St. Valentine's Day Cards