Slow Progress at the Hospital

If you've ever been hospitalized or have had a family member hospitalized, you'll be familiar with what I'm about to say. We are confident that Madeleine is getting better as the meetings and discussions with doctors are getting later and later every day. Last night, I didn't speak with Madeleine's attending doctor until 8:30 PM. While this waiting can be frustrating, we've learned that the doctors deal with their most difficult cases first so it is also a bit re-assuring.

The big news yesterday was focused on results of the most recent echocardiagram. The echo was a little different than Mondays as it showed slightly elevated pressures in her heart. The doctor explained that if this was her first echo, they wouldn't be concerned as the echo test isn't a perfect diagnostic for pulmonary hypertension (PH). However, given her results last Friday, this raises a small amount of concern and muddies the water a bit.

With this muddy picture in mind, the focus for the doctors is to identify a viable explanation for Madeleiene's PH last week. The assumption right now is that her GI issues-- reflux, aspiration, and pneumonias-- have caused lung trauma and this repeated trauma led to the PH they identified last week. While this is a logical explanation, the cardiologists want "proof" from GI that this is correct and, so far, we don't have any test results that demonstrate how/when the reflux and aspirations are occurring. For the next few days, the cardiologists have asked GI to re-examine Madeleine to see if any further "proof" can be identified.

If GI can identify a plausible cause of the PH, we may be in the clear and Madeleine could be released without any further tests. However, since it will be difficult to identify a plausible cause, it is likely that the cardiologists will schedule a heart catheterization (heart cath) in the next few weeks. The heart cath can provide additional data including:
- More accurate readings of Madeleine's pressure. The echo is an indirect measurement tool while the cath can directly measure Madeleine's heart pressures. This is especially important in Madeleine's case as she has small (medically insignificant) "holes" in her heart related to her previous heart surgery. While the holes are medically insignificant, they make reading her pressures via an echocardiagram much more complicated and potentially inaccurate.
- Additionally, the cath can take pictures of the blood vessels in the pulmonary veins leading to the lungs. PH can be diagnosed by identifying inappropriate pressures via echo-- like last Friday for Madeleine-- but the disease itself is characterized by changes in the blood vessels in the pulmonary veins. If enlarged veins aren't apparent, the doctors can be much more confident in attributing last week's PH to the treatable lung trauma (aspirations/pneumonia).

The downside to a heart cath is that it is invasive and the doctors don't want to conduct it unless they feel that it is medically necessary. We'd also prefer to avoid the procedure but if it provides helpful information, we'll obviously support the doctor's decision.

I hope this posting makes sense to you. PH is complicated stuff and if I'm the only one that understands it, that is fine with me-- it really helps me to type all of this stuff out. (I wish her doctors would read it and clarify where I'm making mistakes.) If all of the other technical stuff flew by you, here's what it means for the short-term: Madeleine is going to be in the hospital through the weekend and we don't expect to learn much more until results from the various GI tests-- sleep study (conducted last night) and any other tests ordered by GI today-- are made available. Anything is possible but its likely that we won't know much more until Friday afternoon or even next week. (Remember what I said at the top: good service in the hospital equates with poor health so we're fine waiting until Monday for the results... I'll keep repeating this mantra as the waiting takes its toll this weekend...)

We'd obviously prefer to get Madeleine home but she's in a very comfortable room-- we can watch the ND-UM football game on a flat panel television-- and honestly, she seems to enjoy the audience she gets in the hospital. As one example: she woke up at 4:45AM this morning as the nurse was removing the leads from her body associated with the sleep test. You'd think Madeleine would be angry with such a disruption of her sleep but no, she just flashed her tongue and dimples at the nurse... good stuff.

That's all for now. I hope things are going well for everyone out there. Thanks for your interest and support.

Brent