Thursday Update on Ryan

Each day we've seen positive progress for Ryan's health (even when there have been setbacks, he still manages to have improved at least a little bit from the previous day by midnight). Today the neonatologist decided to increase his feeding volume through his nasal-gastric tube quite a bit so that he could be weaned off of the IV fluid/protein/fat mixture. This was good timing because the IV that was placed in his arm yesterday began to fail early this afternoon. His nurse managed to keep it flowing (even though it was leaking) for a few additional hours until the TPN mixture ran out so that Ryan wouldn't have to undergo another IV placement. The oxygen weaning process is very much a "two steps forward, one step back" or sometimes "two steps forward, more that two steps back" process. Sometimes he has tolerated turning down the oxygen a little very well, while other times his stats drop and we have to jump back a few steps to get him re-stabilized before trying again. He's a fiesty little guy too, so he has pulled out his nasal cannula umpteen times during this process. In addition to weaning him off the oxygen, he also has to be weaned off the pressure of the air flow through the nasal cannula. As of nearly midnight, he is down to a half liter of pressure of room air through the cannula, so really just one step away from normal room air without the cannula which is great as long as he can keep his stats up once he gets there. Ryan's bilirubin count has been creeping up daily, so the doctor decided to start him on phototherapy today. Ryan has to wear these little purple foam "goggles" to protect his eyes, and he wasted no time letting us know that he is not a fan of wearing the goggles. He has managed to get them off his face many times, so I've spent a lot of time today putting either his goggles or his nasal cannula back on. We also got to hold him several times and to attempt nursing a few times today, but unfortunately our little guy has been very groggy, not to mention he still has a nasal-gastric tube threaded down one side of his nose and a cannula up both sides of his nose. The nurses said that this is typical for a persistent pulmonary hypertension baby and to expect him to improve with time. Even tomorrow he may be much better at trying to nurse than he was today. Thanks so much again for all of your phone calls, emails, prayers, support, meals, etc.; They have been very uplifting. If you've left us a message and we have not yet gotten back with you, please know that we do appreciate your care and concern! Our family wouldn't be doing nearly as well (physically or emotionally) if it weren't for all of you!