Aimee is having brain MRI done right now and we are having a late dinner. It has been a difficult day. Aimee is no longer having output from her ostomy, not even gas, so her belly is swollen full of air. So full that her incision is now leaking fluid again. So full that she is struggling with vomiting and having difficulty with secretions. The general surgeon said that she will try to put a catheter up into the small intestine to release air once she has the results from this evening’s abdominal x-ray.
Aimee was spiking fevers again and had new cultures and labs done to rule out anything new cropping up. Her heart rate has been going back up too. She is still critically ill, but we are encouraged by some of the lab results showing improvement in her blood levels and inflammation.
We had a great meeting with the pulmonologist today. She answered so many questions and relieved many worries we had about going forward with a trach. All kinds of thoughts were keeping me up last night including little, but important questions such as if we do a trach, would she still be able to laugh. Were we agreeing to never hear Aimee’s laugh again? No, we are not! Apparently she may even be able to make louder sounds.
Also, while there is no guarantee that this process will bring back more spark into Aimee’s life, it also will not be a painful process for her. If anything it has great potential to make life less traumatic for her. We are encouraged by the possibility and will make a more official decision once we have the MRI results.
We will do our best to get night nursing coverage and to keep Aimee safe. Thankfully though, because of the relationship that we have with Aimee’s doctors here, they completely trust that our heart is for Aimee’s good. They will not keep us here waiting for nurses once it is safe for Aimee to go home. 💛 They will allow flexibility in the rules that are typically set for families. This alone could very well shorten Aimee’s stay down to 4-6 weeks instead of 2-3 months. We feel honored to have such trust and to have this long relationship with such caring doctors.
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