03/05/10 A Good Meeting

Yesterday Patricia went to Evergreen to get Eli's birth records. The records indicate there was a "knot" in the umbilical cord when he was born. I vaguely remember Patricia's OBGYN saying something about the cord when Eli was delivered but she said it was minor and it wasn't an issue so I dismissed it. Now we're not so sure. We did a little research on-line and "knots" are not all that common although what complications they can cause is still a little fuzzy.

This morning at Rounds Patricia and I pressed for some answers on what we were doing to diagnose Eli and what we were doing in terms of treating his apnea and respiratory issues. We're getting frustrated just sitting around without any answers. We asked if oxygen deprivation (hypoxia) could have caused the symptoms we've seen in Eli. The attending Neonatologist said it was highly unlikely. We asked if we should repeat the MRI to see if anything had changed and we asked whether they used diffusion weighted images on the MRI. Dr. Shlafer contacted a neurologist friend in Phoenix and this was a question he recommends we ask. Diffusion weighted images are supposed to show blood flow and any potential damage related to hypoxia or loss of oxygen. The doctor said she would look at Eli's MRI herself and bring us a copy of the neurologist report on the MRI. All of the residents rotated to different departments today so we had a new crop of residents in the NICU and at Rounds this morning. The attending offered to meet with us early this evening to go over all of Eli's tests and answer any more questions we had so we wrapped things up.

At 5:00pm we had our meeting with the Neonatologist and we went over all of Eli's tests and talked some more about hypoxia and what we would see if Eli would have had an oxygen event during delivery. Essentially she said we couldn't know with any certainty but it was unlikely given the fact that respiration and the swallow response are controlled by the brain stem. In most cases of hypoxia it impacts the top of the brain's ability to send signals to the bottom of the brain and we didn't see any of that damage on the MRI. She also told us that most babies who have hypoxia during birth don't get apgar scores in the range Eli had. Eli was a pink and relatively healthy baby at birth so hypoxia is an unlikely diagnosis.

During our meeting we came up with the following questions:

Questions for Neurology
1) When is it worth repeating the MRI/EEG tests?
2) Is there any reason to look specifically at the brain stem on the next MRI?
3) Are there any other tests (genetic or otherwise) that will be helpful?

Questions for Genetics
1) The MRI/EEG were done early in our hospital stay. If Eli's symptoms are due to a metabolic disorder would we see any changes on the MRI/EEG after a month?
2) What are the results of the MRS?
3) Are there any other tests we're considering?

Questions for Pulmonary
1) Can we identify a primary pulmonologist for Eli's continued care? (Preferably one of the sleep apnea specialists)
2) Are we going to do another sleep study and if so when?
3) What is our short term and long term respiratory plan?

We also decided to ask if someone from the Neurodevelopment Department would come take a look at Eli. Usually neurodevelopment only gets involved after a diagnosis is formed and they focus on developmental issues but we figured it couldn't hurt to bring them in to evaluate Eli.