I have to be honest I am ready for this day to be over. ...my sweet Aspen has been through so much the past 19 years and had been doing so well since transplant but then....yes, you guess it we hit a few bumps. However, they feel more like mountains to me. She didnt sleep well as usual due to all of the vitals, labs, and you name it that go on throughout the night to begin with then she started really experiencing labored breathing around 6 am. I could tell she was hurting, exhausted, and scared beyond belief. Aspen is the toughest person I have ever known and for her to look me in the face with those gorgeous big brown eyes as wide open as possible and mutter mom, Im scared, truly meant something was not right. Aspen is definitely retaining some extra fluid around her her lungs and various other places even though she had been given pretty substantial amounts of diuretics....her breathing had become so forced that she was in tears, I was in tears, everyone was in tears. Aspen was given an option by one of her physicians of being intubated or on BIPAP. Biphasic Positive Airway Pressure (BIPAP) can be described as pressure controlled ventilation in a system allowing unrestricted spontaneous breathing at any moment of the ventilatory cycle. She opted for intubation. ..rest easy her surgeon found another possible solution. The name of the resolution is Slow-continuous ultrafiltration (SCUF): SCUF is process of removing fluid but does not allow for significant solute clearance. It is typically used for volume overloaded patients with or without renal failure, such as congestive heart failure patients refractory to diuretics. Therefore, that is what is happening right now....she says she feels a tiny bit better after a few hours so that is a plus. SCUF will continue throughout the night and then her team of physicians will reevaluate and decide to continue or not in the morning. She has been equipped with a feeding tube known as a dobhoff. The dobhoff is a small-bore, flexible silicone tube usually inserted into the nose with a weighted tip that should preferentially be past the pylorus. She will be given her medications in a crushed form with water added through this tube until she is able to swallow on her own without risk of aspiration. I could go on and on but it has been a very trying day to say the least. I am praying that tomorrow is a much better day. We knew there would be good and bad days but I definitely was not prepared for what was ahead of me today.. As the day went on and what in my mind seemed to be headed nowhere good ,her father whispered in her ear...two steps forward and one step back, Aspen, regardless we are still making progress. It is so difficult sometimes to stay positive when my baby is hurting and I am helpless. I have to remember that she remained positive the entire time while waiting for this beautiful heart so I have have to follow her lead. Tomorrow is another day. ...I love you Aspen! Thank you all for following our journey, for your thoughts and prayers, and supporting us! As always much love and appreciation~ASPENS ARMY
Posted on: Tue, 20 May 2014 03:23:00 +0000
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