*special guest blog post written by Ed* :)
Today we had multiple rounds of CPT (Chest Percussion Therapy) that dislodged a mucous plug. It seems to have helped Aimee with her breathing and we’ve been able to get off of BiPAP for the evening. Yesterday we were only able to get off of BiPAP for a total of two hours in the evening. It’s hard to see her so exhausted, but glad that we have the tools here to help her get the rest that she needs. We have been rotating masks so that we can offload the pressure from the sore that is on the bridge of her nose. We have someone coming from the sleep clinic tomorrow to bring even more mask options to help us get a good fit for her.
Tomorrow we will start the changeover back to the original liquid hope formula. Her ostomy output has been lower, averaging around 825 and our target goal is 750. We are getting close, but need to be lower to keep her fully hydrated. Switching back to the original formula does mean we have to go up on her rate of food, but we’ve worked with nutrition to come up with a plan to make the transition over. The process of transition and increase could potentially take another week or so in order to accomplish.
We are getting closer to getting a new portable Vent/Bipap to accommodate Aimee’s increased use of approximately 18 to 20 hours a day. We had a consultation for the wheelchair today that was supposed to be for her post surgery modifications to the wheelchair. Unfortunately, she was so sleepy we couldn’t get her in the wheelchair, but we were able to discuss the new need of the BiPAP and oxygen canister that will need to be mounted to her chair.
Rosa and I are set to switch care tomorrow so that she will be here at the hospital with Aimee and I will be at home with the other kids. It is so hard and I want to be in two places at once. It is both refreshing and exhausting to be at home with the other kids without Rosa. I also want to be at the hospital to help with Aimee’s care. Rosa and I have done her care together and I truly value the process of us doing it together. To do it without her is pretty nerve-racking. It feels like a constant barrage of people coming in and wanting to make changes to Aimee’s care or do things that may not align with what we want or what we think is best for Aimee. I always feel like I’m on the defense. I think part of that has to do with the fact that I am the Dad and they assume that I haven’t been a part of Aimee’s care throughout the process.
The other heartbreaking part of this process is that Rosa and I don’t get to spend hardly any time together. We have a couple of hours of overlap at the hospital which is usually spent discussing Aimee’s care and next steps. I can’t wait to get to actually spend time with my best friend, my wife, and truly the person that I want to spend the rest of my life with. I miss her so much. She is my rockstar. If you’ve been following along with us on this journey, reading her blog posts, you know how amazing and selfless she is. I feel so lucky to be going through this adventure with her and couldn’t imagine doing it with anyone else.
Sincerely, Guest blogger
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We love to read your comments and encouragements! Messages to Aimee are always welcome too. I will definitely read them to her. :)
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