PICU Day 6 ~ (June 30, 2012)

Most of our time today was spent cuddling Noelle since she clearly was not feeling as well as she has the past couple of days.  She had a couple of periods in which she smiled and played with her toys, but those were very short lived.  Last night, she began to have her desatting episodes again, but this time they were not related to reflux; and as they became more frequent through the night, the medical team decided to put her back on the nitric oxide.  It is extremely concerning that she initially responds well to treatment but then declines once it is removed, and it points to signs that something is aggravating the pulmonary hypertension beyond what we can see at this point.  Over the past couple of days, many people have talked to us about Noelle's situation and several have advised us to get a second opinion or switch her care entirely to Boston Children's Hospital, which is #1 in the country for cardiac issues.  We had already requested that Boston be consulted after her heart catheterization on Tuesday; but with her setback today as well as some other strongly felt opinions from trusted medical friends/family, we moved up that request and spoke with the attending doctor tonight to get the process started as early as tomorrow morning.  At this point, we do not yet know if we will be transferring, but it is a strong possibility given the suspicions with her heart, the aggravation of the pulmonary hypertension, and the hint of heart surgery.  This decision is not without much prayer, much thought, and much advice from many others and does not come without a host of other ramifications for Noelle and our entire family.  Please pray for wisdom for us as this is weighing heavily on our hearts right now.  We desire the best possible care for Noelle, but ultimately that best care is wherever God chooses to place her.  That said, we cannot ignore the urgent and trusted advice from so many dear people who love Noelle and have her best interest in mind; and so we are moving forward and just trusting that God will clearly show us how, when, and where to proceed.  We do not know how long this process will take or what Boston will advise after reviewing her records, but we will continue to keep everyone posted as we are able.  Thank you so much for your love and support and your ever constant prayers.