12.26.23 Guest Blogger

Guest blogger: Ed

Merry Christmas, family and friends. I can’t believe the year 2023 is almost over. Time certainly flies by faster every year it seems. I’m not really sure where to begin. It’s been such an up and down year and yet it seems that we continually land back where we started. Aimee has had happy joyful days and sad painful days, all of which blend together week to week. 

We meet with her GI doctor every 6 weeks and every time as we go back through the numbers, of which we record every 4 hours, every day and every month, we average out the 6 weeks and the numbers are almost always are the same. Even though we have weeks of crazy high output and sometimes dribbling low numbers, in the end the average is the same? But this really sums up where we are at, ridding the carousel, up and down, round and round every day. 

I think every week I could write a different blog post saying how hard the events have been that week and then follow it with one about how well things are going. This had made it difficult to communicate and explain where we are at. These last couple of months in particular have been hard emotionally on both Rosa and I. Typically it’s one or the other and we help to carry each other, but when it hit us both it’s kind of leaves us a bit speechless …. Even now I feel a loss for words. 

This has been just such a long, exhausting journey and yet we have to just keep swimming. Aimee continues to fight to be here so we are going to keep fight with her. Know that from the outside it may look as though all is good and it might even be on that given day or moment, but it’s a fight keep it all together. So many times one thing goes sideways. Even a small thing like a prescription gets canceled for no reason or the wrong IV pump gets used and it takes the wind out of our already exhausted sails and we struggle.

For those of you who care and pray for us please continue. We need all the support we can get and know that if you don’t hear anything it might be that we just don’t know what to say. We are truly grateful for the family and friends that we have. Merry Christmas and Happy New Year!

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. 

7.12.23 Bones

Spending the day down at the hospital. We had a dexa scan to check her bone density and are currently in infusion clinic for for her zaledronic acid bone infusion. Wish all the areas of the hospital care were as supportive as this one. It is the only place we come that asks if we are getting the resources we need, if we need supplies, is completely accommodating, ect. This is the clinic we are technically supposed to come to weekly for weight, blood draws, and dressing changes. 
Even with how supportive they are, we were both so anxious bringing her here, difficulty sleeping, and flashbacks. Just keep breathing and get her back home where she belongs. 

The younger 4 kids and I are finishing up our school year this week. We did a modified schedule of 3 weeks on and 1 week off all year, which left us with another 3 week term during the summer. It was a wonderful schedule and we all voted unanimously to continue it next year. Looking forward to a long pause with hopefully lots of family time! Aimee is still almost entirely in her bed, but with the wonderful back access to the house and the new patio our world has opened back to the outdoors. We even got to sit outside and see the neighbors’ fireworks this year. I very much wish that Aimee was outside with us, but it has been life giving for the rest of us to be in the fresh air! 

6.16.23 Sweetness

We made it through a rough month full of sicknesses that went careening through the family, a respiratory bug and a horrid, long lived stomach one. We are finding our barring again. 

Aimee has been up and down with some pain, some grins, and a lot of sleeping. Her monthly bloodwork has been a bit goofy so more changes are being made to her TPN including another added medication. She is basically a super absorber through her central line. Her providers see her as an anomaly in many ways. Aimee likes to do things her own way. Despite being on “a whiff” of lipids only 3 days a week, her triglycerides and all fatty acids are extremely high. Her vitamin levels have also been tricky to keep right. There is also some indicators of stress on her organs showing. That one though is very much expected with longterm TPN use. 

Overall we are taking life about one week at a time currently. There is much sweetness here in the middle of all the hard. Last week we were able to enjoy individual time with each of the other 4 kids outside of Aimee’s room on the patio. Next week we start nature school. Much sweetness. 

5.8.23 Update

What a long month this has been! We were preparing as best we could for the end, but now here we are moving forward. Living in between relief and hyper-vigilant worry. We are picking back up all of the tasks we had laid aside as unimportant a few weeks ago. Supply orders, appointment scheduling, bloodwork, ultrasounds, equipment replacement, and x-rays. I barely care about keeping up with all of it now, but know we must. Because our loved girl is still here, all of the other is here too. 

Wednesday we had our monthly appointment with the GI doctor and nutritionist. We don’t really know for sure what happened with Aimee’s intestines, why they nearly stopped or how they have slowly improved every week since. The specialists can’t explain it either. I do know that I will have a hard time not associating it with the sedated scope. How could we ever agree to anything sedated again after such a small, short sedation seemed to cause such near calamity?! And yet part of our conversation Wednesday revolved around the central line having some bleeding/swelling again and the possibility of needing to replace it. Oh I pray that it does not come to that decision. How could we say yes and yet how could we say no? 

Aimee has been dealing with a pressure sore in midst of all of this due to her lethargy. She is getting sub-optimal nutrition currently because we are keeping her calorie intake super low, about 400 calories daily on average. She is finally losing some of the extreme weight that the TPN had put on her over this last 18 months, but it is SLOW. About a pound and a half per month. Her weight increase has been a major source of discomfort for her and our main goal is comfort. So we are choosing sub-optimal nutrition, but this isn’t great for her skin health. After about 6 weeks with this pressure sore, we are finally seeing improvement from all our efforts at hourly repositioning, ect. 

Hard work has been going into making a covered patio outside of Aimee’s room! We are all loving the fresh air and looking forward to many beautiful days outdoors either with Aimee or right outside her room. So much gratitude to the friend who donated the concrete, the friend who helped build the roof and pour concrete, the family who sent vertical planters and dirt to grow veggies on the patio. Everyone here is so excited!