12.2.21 Trach Floor 37

This is a collaborative blogpost that we wrote together over FaceTime tonight. Mostly Ed’s thoughts.

There are lots of emotions from today. All the kids and Rosa came down for a visit. The hospital management agreed to a once a week 4 hour sibling visit for our family. We have had 4 months apart this year and this stay is 2 months straight so far today. Being together was a great reminder of the precious life that we have had. We were all there in Aimee’s room and she is needing all this support, but the kids are right there in the midst of it. This is the life we are fighting to have for her. Yes, she will need meds, suctioning, treatments, and IVs in the midst of cookie decorating, but that is totally normal for us. 

The kids’ interactions with Aimee are worth it. Several different staff and team members saw our other kids there, interacting with and emotionally connecting to Aimee. They were all impacted seeing Louisa climbing up next to Aimee and snuggling in with her or watching Caleb have a difficult time leaving Aimee behind. We’re fighting to have Aimee with her siblings around her. This visit was such an affirmation of that, of what we’re fighting to accomplish. We’ll take home what we need to take home to get her comfortable and have her surrounded by love. Our life right now is split apart. Two separate worlds. It was so great to all be in the same room. 

We took several pictures, but also just tried to savor the time being together singing Christmas songs, painting, eating, and talking. Walter took notes and asked lots questions about food. We think he was maybe creating a menu. Caleb very diligently watched over a construction job happening outside the window. He reported to Ed how many nails were put in and what methods were used. Elliot played DJ with the Christmas tunes. All the kids painted pictures for the walls. 

It was perfect to go from that to the care conference. Knowing that is what we want, this life with family for Aimee. It was clear to see what is right and good. Everyone that was in the room and on the phone for the conference felt this too. 

Aimee’s primary GI doctor was able to attend via phone. Palliative care, Medically Complex Care, and her medical attending and resident were all there. The decisions we made are in pursuit of our goals for Aimee, which are:

-comfort

-home

-happy

-alert

To that end, we are choosing to not do the best thing for her long term body, but the best for her quality of life. Aimee will continue to receive full hydration and calories via TPN. She will have a central line placed for ease of care. We agreed to turn off her water and food completely. It is only causing pain and discomfort at this point. Emotionally this is a huge hit. Every day of her life we have fought to feed Aimee. Every single day from the one she was born into this world, we have fought to feed her. It feels very odd and emotional to be done with actual food. Yet, the other people around us that care about Aimee feel the same way. This is really right, but it doesn’t make it easy. 

Aimee’s GI doctor, Dr A, will be doing a scope of her stomach and upper small intestine this coming week. This is primarily in the hopes that she will find something when she scopes the upper GI tract that will allow us to remove the NG suction. There are lots of different thoughts (like maybe changing from

a GJ to an NJ as it is a smaller tube through her stomach into the small intestine). The scope is also to do our due diligence to make sure there are no other options. We do have to sedate her, but we feel it is worth the risk. If we can get this NG suction out it will be such a better quality of life for Aimee. 

Dr A is willing to take on the prescription for the TPN, which a HUGE deal. We were told there is no way that she would with how busy that she is. It just isn’t something she does typically. We are so so thankful for her and everything that she has done for Aimee throughout the years.

We will continue to titrate up on the gabapentin and continue with the GI meds for keeping the small intestine moving as much as possible. We did start our 5 week frame today of slowly working back to enteral seizure meds and will continue to work towards giving all of her meds into her small intestine again.