8.29.23 Update

Aimee has been on the fentanyl pain patch for just over a week and it has been such a success so far. It is giving her a more even dose of medicine continuously versus our previous method and we are using occasional breakthrough doses of morphine when she needs it. 

Overall she is more stable again. The intestines have woken back up thanks to a respiratory virus she picked up on top of a trach infection. Both challenging and oddly helpful. As her GI doctor said last week, Aimee’s intestines react unpredictably to every event in her body and brain. Her bloodwork is keeping our doctors on their toes. The rollercoaster continues. We have a good plan in place for the next wave and better tools in place. Assuming she repeats the same issue! Many times I have heard and seen for myself that Aimee does things her own way. She is not following any medical textbook and never really has. 

And she is happy to be here. Not much else matters when she smiles. 

8.14.23 Hospice Update

We have just finished a week of family visits and came right back into the swing with our hospice visit this morning. Last week when we met with the team, we discussed the situation with Aimee’s intestines and what that could mean going forward. The hospice director/palliative care doctor wanted to talk directly with our GI specialist to get a better understanding of what level of output would be intolerable. The two of them did talk this week, so we got the rundown this morning on that discussion. 

Our GI was very hesitant to give a specific number since Aimee has an incredibly high pain threshold and has surpassed all expectations to this point, however she feels that 300 or below would be too low for Aimee to handle. If it is too low, she would have the same symptoms and pain as an obstruction. At the level she is at currently, she is already at an very high risk of obstructing. Her average this past month has been 380 with lows down to 320, though this last week she did increase up to an average of 450. (For reference, her average earlier this year was 800.) We of course have no idea what she will do from here. 

The difficulty that we have is that once Aimee dips too low, it will quickly become extremely painful. We will have to turn off her TPN/all fluids and switch to a morphine pump. Unfortunately there is some complication with that as it will take at least 24 hours to get a pump in place. The recommended course would be to take her down to children’s for IV morphine for that 24 hours. This is a big no for us. We really want to keep her home where she feels safe. So preemptively we are discussing starting a fentynol patch for the continuous pain and using the sublingual morphine for breakthrough pain. If we adjust to this now, it would give us an quick way to increase if she obstructs/drops to an intolerable level. At this point the more pain medication we give her, the more interactive she becomes as she is coping with pain by sleeping/hiding. 

This is all difficult to consider since there are no definite answers on how long or how low she can go. We really want to avoid Aimee having extreme pain. We want to help her feel safe, comfortable, and loved. 

8.4.23 Another Step

After the scare we had in March with Aimee’s intestines slowing down causing extremely low ostomy output, she eventually settled onto a new plateau about 35% lower than her previous function. She had remained there until 2 weeks ago. Again her intestinal function suddenly decreased another step down, 20% less than it has been. Her pain threshold is so high and she is handling this step down quite well. At this point we’ve only added one additional dose of morphine daily and as long as we keep her meds going, she most often seems to be comfortable, even happy. She has some moments of clearness, of being present and interacting. Delightful moments. 

We are hoping for a nice long plateau again. After talking it through with the hospice nurse in our weekly meeting though, we wonder just how many more of these step downs in function she will be able to tolerate. We’ve had to talk about next steps, about difficult decisions and I anticipate more of this conversation on Monday when we meet again with the full hospice team. It is difficult to continually live with these possibilities in front of us at an undetermined distance while we also attempt to live. 

And life does continue on around her. Today Louisa was putting on make-up while sitting in Aimee’s bed. And then there is Caleb snuggling Benny on her bedroom floor. Precious every day life.