04/22/10 Another Good Night

I worked from the hospital today and got to spend some good time with Eli. I arrive at the hospital around 8:30 in the morning and I've been leaving after Eli's 9:00pm feeding so it makes for a long day but at least I'm here watching over him so nothing bad happens.

After the little SNAFU with the surgery thing yesterday I've been a little more vocal about making sure the doctors consult us on everything. It seems like we have to have these conversations every 4 weeks or so because we had a similar discussion around the end of February and then another one around the end of March and now we're nearing the end of April and sure enough, we need to address the issue again.

Last night Eli spent the whole night on the nasal pillows and his CO2 level was a 51. We're quickly showing that with a little effort and some ingenuity we can keep his CO2 level down and all of this is being done on a machine that we could potentially go home on.

After I got home for the evening Patricia and I sat down to discuss what we want to have done in terms of this surgery. It was a long hard discussion but I think we're resolved to move forward with the G-Tube. We're going to find out if we can get Eli circumcised at the same time so we don't have to go through anesthesia again in the short term. We're going to ask them to schedule the surgery next week so both Patricia and I can be available for it. Tuesday or Wednesday are looking pretty good right now but we'll see what they can schedule. Waiting will give us some time for Patricia to get over her cold and it will give us a little more time to see if the nasal pillows are going to work. The last thing we want to do is put Eli through this and then have to get a tracheostomy a few weeks later.

At Round this morning I informed the doctors that we will consent to having the G-Tube placed and I laid out our thoughts in terms of getting the circumcision done at the same time. The NICU team thought that was a great idea and they floated a couple more tests they want us to consider. They would like to perform a muscle biopsy and they want to take some spinal fluid to look at Eli's neuro-receptors. Both of these tests were mentioned in the past but neither was ranked very highly in terms of diagnostic value.

A muscle biopsy is a procedure in which a piece of muscle tissue is removed and examined microscopically. A biopsy needle is usually inserted into a muscle and when extracted, a small amount of tissue remains. A muscle biopsy can lead to the discovery of problems with a nervous system, connective tissue, vascular system, or musculoskeletal system. With weakness and low muscle tone, a muscle biopsy can help distinguish between myopathies (where the pathology is in the muscle tissue itself) and neuropathies (where the pathology is at the nerves innervating those muscles). Muscle biopsies can also help to distinguish among various types of myopathies. The thing to keep in mind is that a muscle biopsy is usually a first step. If they encounter irregularities in the muscle tissue then you usually need to follow that up with further genetic testing.

The other test is kind of a shot in the dark but it isn't as invasive as the muscle biopsy. They are looking to see if Eli has a sufficient number of neuro-receptors in his spinal fluid. Much like the muscle biopsy this isn't a definitive test either. If they take some fluid and find out that Eli has a lower than normal level of neuro-receptors then we have one more clue to the problem but still no answers.

On the surface these two new tests they are proposing don't sound too back but I need to spend some time looking into why we need them. The less they have to do to Eli the better.