Slow Improvement

Madeleine spent the weekend in the PICU at Children's Hospital and is recovering well from her most recent bout with pneumonia. Given her progress, she was transferred Sunday night from the ICU to the general floor as she completes her recovery.

While we're very pleased with her recovery from pneumonia, we're focused on preventing future problems. There are four factors that play into Madeleine's pneumonia and past hospitalizations:
1) Pulmonary: As with all premature babies, Madeleine's lungs show some signs of prematurity making her more susceptible to infections, primarily pneumonia.
2) Cardiology: While Madeleine has had her major heart surgery, some doctors have expressed concern that her heart isn't performing at 100% and is potentially creating a fluid imbalance in her lungs. This is unlikely but until we rule it out, it is another potential reason for why she has had recurrent pneumonia.
3) GI issues: This is the most likely culprit (or the primary culprit) for the recurrent pneumonia as we believe that Madeleine's pneumonia is linked to micro-aspirations of fluid into her lungs. During Madeleine's previous stay in the hospital, the doctors conducted a swallow test and milk scan to determine if Madeleine was aspirating. The swallow test checks to see if any formula aspirates on the way down the esophagus whereas the milk scan looks to see if the food is refluxed back up from the stomach. Both tests were somewhat inconclusive as they showed potential for aspiration but didn't confirm it.
4) Down syndrome: This is the hardest factor to assess but it likely plays into Madeleine's health issues. Kids with Down syndrome usually get more than their fair share of respiratory infections and the cause isn't entirely clear. In the end, its possible that Madeleine's ability to fight infections is somewhat compromised and we just need to keep this in mind whenever she displays signs of an infection.

Taking all of these factors into account is a complicated business and we're working diligently with our team of doctors to ensure that we consider all aspects in treating and preventing future bouts with pneumonia. During Madeleine's previous two visits to the hospital, she was admitted to the respiratory/pulmonary floor but when she was transferred out of the ICU this time, she was moved to the gernal medicine floor. We were very pleased with this decision as the doctors have taken a much more wholistic approach in treating her pneumonia. To be certain, they're focused on resolving the acute pneumonia issues but they're spending a great deal of time on all of the four factors listed above and we feel much more confident in our ability to address the larger medical issues facing Madeleine in the future.

We don't have a final plan for future care but we've discused making the following changes:
1) Inserting a nasal "J" (NJ) tube. Madeleine currently has a nasal "G" (NG) tube that we use to put formula directly into her stomach. The NJ tube is the same type of tube and is also inserted through her nose but the tube extends past the stomach into the top of the small intestines. By using the NJ tube, it should ensure that Madeleine doesn't reflux and aspirate. If her main problem is aspiration caused by reflux (Kirsten and I believe this to be the case) then we would expect to see major improvement in her respirations (slower breathing and more relaxed in general). We'd also expect to see fairly aggressive weight gain and in theory as Madeleine grows, the valve that separates the stomach from the espophagus should strengthen thereby decreasing reflux in the future.
2) Thickened "PO" feeds: The doctors would still like us to do some feedings by mouth (PO) but given the concern over Madeleine aspirating formula when she swallows, we will need to thicken the formula with rice cereal. We tried this once before and Madeleine wasn't a huge fan. That being said, we didn't work at it too hard and given the importance of avoiding pneumonia, we're open to trying again.

These two changes are the major options that we are considering at this time. The doctors do have a number of other tests scheduled before we're released but these are primarily aimed at ruling out any other potential causes of aspiration and/or susceptibility for infection and we're not expecting any new findings. (We'll see how that statement is revised in the coming days.)

If all goes according to plan, we think we'll be released from the hospital on Wednesday or Thursday at the latest. I'll provide further updates in the next few days as we finalize the changes in Madeleine's care. Thanks again for everyone's support.

Brent