11.22.21 Trach Floor 27

Busy day. Aimee still hasn’t settled into her feed rate from yesterday morning. I actually had to pause feeds for awhile this morning to calm her down. She is resting now, but easily agitated. More than anything, we want to get Aimee to a place of comfort with minimal pain. Tonight we are going to increase her CBD by another 25% to see if that will help. Her output from her NG suction has actually increased, which means that our attempts to use a food drip to wake up her gut more are perhaps not working. She is producing stool through the ostomy, but it is actually too much. She doesn’t seem to be absorbing enough. 

The GI team and the Liver/Intestinal Failure team will be consulting by next week to come to an official decision about next steps. The attending is prepared to proceed with sending Aimee home on TPN, but wants the official term of gut or intestinal failure to come from GI. We also need one of the departments to write an order for us and to oversee the TPN from home. We hope that she will be able to take a little bit of food as it will lessen the negative effects of TPN. However, we also have to get the NG suction out to go home and taking that out may actually reduce her ability to tolerate the small amount of feeds we have gained. It is hard to see her be so uncomfortable so much of the time. I miss her smile and her laugh. 

We also met with wound care today. He helped us trouble shoot the ostomy issues we are having as a result of the bloating. He also changed her abdominal wound dressing. It is healing quite well, though a bit of over-granulation. The trach stoma was also reviewed and it is looking great. 

Oral surgery came by to give us their verdict on the tooth situation prior to doing the bone infusions. We had been told by the dental dept that the tooth would have to be removed prior to starting. We really want to avoid any extra anesthesia or trauma, but also feel the infusions are important given her recent fractures. The surgeon said that the risk is low so we don’t have to remove it. Thank goodness! One area that is simple! She should be having her DEXA scan this week to get a baseline of her bone mineralization before her first infusion. 

The case manager warned me in our meeting today that we would not be able to be discharged right at the end of the year, but will have to wait until at least January 4th. Seemed almost comical to be quibbling about such a specific. We haven’t even decided how much nursing we absolutely have to have in order to feel safe at home. We sure don’t want that to hold us here! We’re hoping to get some night nursing coverage, at least a few nights. Yet, we’d rather be exhausted at home together then split apart and exhausted here. 

Another day of training on the books too. We were able to get a basic understanding of the vent, but will be learning all of the settings and what they mean tomorrow. I got to place my first trach. Ed had already placed one 2 weeks ago. Thankfully I’m not competitive. :)

In happy moments, here are a few photos from my time at home. Makes me glad to be with them. We are finishing up our study of France and moving onto Spain. Any suggestions of Spanish recipes or fun things to learn about from Spain? France was too easy to come up with ideas, so we have spent the whole school year there so far. 😆