Not Such a Good Day

Today was planned for our big trip to Michigan. We packed the car to the gills as we expected to be in Michigan and West Virginia for the next two weeks. With two dogs and a little girl with lots of medical issues, it was a crowning feat for me to get everything in the car. We whisked Madeleine into the car for her first appointment with the pulmonary clinic at Children's hospital. Given Madeleine's continued improvements, we expected a short doctor's appointment and then we were heading back home to pick up the dogs and get on the road to Michigan.

Of course, the best laid plans of men and mice....

We met with the pulmonologist this morning and they downloaded data from the monitor that Madeleine wears. The monitor tracks three things:
- Fast heartrate (tachycardia)
- Slow heartrate (bradycardia)
- Slow breathing (apnea)

We haven't had any alarms for fast heartrate so that wasn't an issue. However, we've had alarms for both apnea and bradycardia. We've spoken with our pediatrician as well as with Madeleine's cardiologist and they weren't overly concerned-- often the machine has false readings and since Madeleine appears to be improving, they weren't too concerned. The pulmonologist had the benefit of downloading the data from the machine and she told us that the apnea episodes logged by the machine were inconsequential and of no concern. However, the bradycardia events demonstrated a great deal of concern. To be clear, Madeleine's heart never went exceedingly low but by looking at the heart output (the squiggly lines), the pulmonologist could see that her breathing dropped significantly prior to the bradycardia events. This was confusing to us at first because the machine didn't show problems with apnea but we learned that there are two types of apnea. In premature infants, "central" apnea is common. This type of apnea occurs when a baby's nervous system is immature and the baby simply forgets to breathe for an extended period of time. Adult apnea-- the kind where you snore really loud-- is considered to be "obstructed" apnea because something blocks the breathing canal and prevents one from breathing. (snoring is just a partially obstructed breathing canal.) Madeleine's machine only monitors central apnea as it is designed to monitor Madeleine's chest movements. In obstructed apnea, the chest continues to move as the body is trying to breathe but is unable due to an obstruction.

I apologize for the lengthy description but I think it helps understand what is going on with Madeleine (at least it helps me to explain it in this manner.) The question that remains is what is causing the obstruction? The immediate concern is that Madeleine is aspirating formula into her lungs, thereby blocking the breathing passage and potentially damaging her lungs. Its unlikely that any major damage has occured to this point but given the potential for further damage, the doctors recommended admitting Madeleine into the hospital today so that further tests can be conducted. In other words-- I'm typing this from my house and Madeleine is back in the hospital.

We're obviously disappointed by this development as we were really looking forward to showing Madeleine off in the Midwest. Furthermore, we felt like we were beyond major medical issues-- at least in the short term-- and today has been rather difficult for Kirsten and I. (It was particularly difficult leaving the hospital without Madeleine.) While we are disappointed by this setback, we're also hopeful that by identifying the obstruction and addressing the situation, Madeleine will be able to breathe slower (she's always breathed faster than the doctors like) and will be able to eat more effectively. Both of these developments would decrease the amount of calories her body is consuming and should help her to gain weight and develop more effectively. In other words, we're hopeful that the short-term pain of postponing our trip to Michigan and admitting her to the hospital enables us to turn another corner in Madeleine's development.

In terms of next steps, Madeleine is going to go through a number of tests tomorrow--- today was spent admitting Madeleine and getting a baseline for how she is performing. There are three specific tests that the doctors want Madeleine to undergo:
1) Swallow test (aka MBS): This test is conducted by a speech therapist. The therapist will feed Madleeine barium and will watch to see how Madeleine is swallowing. At the same time, a machine will follow the barium as it goes down to see if any of it aspirates into the lungs.
2) Milk Scan: In this test, they will mark formula(don't know what they use) and will feed it through her feeding tube. They will watch the milk on a monitor and will see if reflux causes it to move into the esophagus and possibly into her lungs. Additionally, they'll check to see how long the milk remains in her stomach and if anything else fishy is going on.
3) Sleep test: In this test, they will monitor Madeleine to see if any obstructions occur when she is sleeping. (They do this type of a test on adults to determine if they have apnea. I know because I've spent the night in a sleep clinic and I have apnea.) They can also see if there are other factors-- possibly her feeding tube-- that could be causing the obstruction.
With these three tests, the doctors can determine the best course of action. There's no way of knowing right now, but the doctors have hinted that the most likely cause is that small amounts of formula are aspirating into the lungs. If that's the case, the cure could be as simple as putting a thickening agent into her formula. Of course, there are tons of other issues that could be causing problems and we won't know more until the tests are conducted. The best news is that, regardless the cause, the doctors were adamant throughout the day that each problem can be addressed and that this should not be a long term problem. (It could take months to finally resolve but we can resolve.)

So-- the game plan for tomorrow is as follows:
- The milk scan and swallow test are scheduled for tomorrow morning (hopefully). If that happens, we'll have results tomorrow afternoon.
- The sleep scan will take longer to schedule and its possible that we'll take Madeleine home and do the sleep scan on an out patient basis. The scheduling of the sleep scan will largely depend on the results of the first two tests.
- Depending on the results, it is possible that Madeleine will be released as early as Friday morning. If this happens, the doctors have indicated that we're just as capable of addressing Madeleine's medical needs in Michigan as we are in DC and Madeleine could make her MidWest debut as early as Sunday afternoon. That being said, we may not get released that early and Madeleine could be in the hospital for the better portion of next week.

We hope to know a great deal more about the situation tomorrow afternoon and we'll provide a blog update as we learn this information. Thanks again for everyone's support. Let's just hope this is a minor bump in the road....

Brent and Kirsten