Still at Hospital

We're still at the hospital in the Heart and Kidney unit at Children's hospital but it seems like our time is nearing an end. The doctors have been extremely cautious during this stay as they are hoping to prevent any further hospitalizations. Additionally, they've been a little confused by Madeleine and want to make sure that they don't miss anything. Here's a quick run-down of where we are:

1) Cardiology: We are in HKU because Madeleine was diagnosed with pulmonary hypertension two Fridays ago (9/12). We are getting another echocardiagram today and we're hoping that it continues to show that the hypertension is resolved. If this is the case, we'll likely be discharged and will return to the hospital in about a month for additional tests. Madeleiene's initial hypertension readings were very high so the doctors intend to monitor her closely for the time being. I'll report more once the echo results come in today.

2) GI: Madeleine is not feeding by bottle right now and we intend to keep it that way for at least a few months. She is on a continuous feed pump and her feeding tube goes past her stomach into her small intestines. The goal right now is to get her to grow (she's nearing 8 lbs) and we'll reassess in a few months. We'd prefer to feed some via bottle but given the likelihood that Madeleine would aspirate formula into her lungs, we're not taking that chance. This is quite important as Madeleine's lung issues likely caused her high hypertension readings and further trauma could lead to this condition once again.

3) Pulmonary: Madeleine had a CT scan yesterday and it largely confirmed what we already knew: her lungs show signs of BPD (premature lung condition) and resolving pneumonia. The good news is that none of the damage/issues appear to be life long problems. If we can just keep her healthy and get her to grow, her lung condition will improve. Madeleine has also developed a new issue in the hospital: her oxygen saturation rate drops when she is laying down in certain positions (called positional desatting). We're not entirely sure why this is happening and we're trying to come up with a solution. The good news is that once she is re-positioned, her saturation rates go up quickly so it doesn't appear to be a long-term issue. Its likely that she obstructs (like sleep apnea) and this issue arises. This is the most acute issue we're facing right now and ideally we'll have a solution before she is discharged.

That's about all we're focused on right now (think that's enough). Once we resolve all issues at the hospital-- namely, the echocardiagram and the positional desatting-- we need to determine where Madeleine will be discharged to. We have the option of bringing Madeleine home and this is our preference. However, we have had some discussions about moving Madeleine into a rehabilitation hospital for a short-term stay. We feel that we're fully capable of handling all of Madeleine's day-to-day medical issues but we're a little uneasy about the positional desats and by Madeleine's general instability. Given these issues, we may decide it is beneficial to place her in a rehab hospital for a few weeks to allow her to grow and ideally eliminate the positional desatting. When we bring her home, we'd like to be confident that she's strong and won't relapse and end back in the hospital for another stay. The jury is still out on this decision and its one we hope to resolve in the next few days.

Thanks again for everyone's support. This is a long, frustrating road but we're making the best of the situation and we're confident in Madeleine's ability to overcome all of these challenges. Take care,

Kirsten and Brent