12.28.23 Hello again

Now that Ed has broken the silence, I think I am ready to write again. Both Ed and I have been struggling with overwhelm, depression, and even physical challenges. This is taking its toll on our minds and bodies. Around and around we go through scares and roadblocks and stabilizing again and then around to another set back. The ride on a carousel that has lovely views, but terrifying turbulence, is going too fast for comfort, and never ends. 

This past month has been another round of “normal” for Aimee on the roller coaster. Today she is spending the day in the infusion clinic at children’s. 2 days ago she finished 14 days of a strong IV antibiotic. She had her first social outing in years 2 weeks ago to watch Caleb in the church Christmas play. She needed an increased dose of her fentanyl patch to cover her pain levels. Her j-tube (medication tube) broke late at night and we had to work with hospice to keep her out of the ER. The work around caused some trauma, including rectal bleeding and muscle tremors. We were able to get an emergency appointment after 36 hours to have the tube replaced in Interventional Radiology thankfully. She got to spend time sitting on the couch a few of her stable days this month and 2/3 of the times she had no pain. She had multiple weeks without her night nurse. And there have been several respiratory bugs going through the house. Another month with Aimee.

I could go on with the drama that we have also dealt with for machinery and medications this month. Each week we are either in the middle of a wave, trying to breath after the wave, or dreading the next unknown source of one. You can see why it makes it hard to communicate here, because I barely know what to say. And when I do, it feels full of complaints. Thank you for baring with that. Aimee is okay. She is home. Also, not okay. 

There is lots of good here too. The younger 4 kids and I take Fridays to either have adventures or learn with friends in our small co-op. We have had laughs and sweet moments. The kids keep us smiling and hopeful. They give me a reason to cook real food and to make a to do list and to look forward. Aimee has days too where she is alert. She will look right over at me or give us a sweet smile. On the good weeks, we gain traction and breath and maybe start to make plans. On the rough weeks, we go from task to task like machines. Here we are. Recovering, but never recovered. Stable, but unstably. Smiling, but full of anticipatory grief. Flippant, but masking anxious worry. It never ends. We don’t want it to end. But also, are hanging on for dear life. It’s no way to live, yet it is also real life. 

Now, after that tumble through emotions and confused thoughts, here is a photo dump of birthdays, halloween costumes, and adventures. Sweet moments with our family living as best we can on the carousel. 

-Aimee and Louisa snuggling together-

-Louisa turns 4-

-Kayaking with Louisa and Alyssa-

-Zoo with cousins-

-Adventure to River Meadows Park- 

-Sibling movie snuggle in Aimee’s room-

-Kayaking with Caleb and Louisa-

-Taking the kids on their first ferry ride-

-Adventure to Mount Erie-

-Halloween costumes-

-Walter turns 6-

-Elliot making gnocchi with his own homemade ricotta-

-Visit from Santa and reindeer-

-Adventure to Padilla bay-

-Caleb turns 12-

-Go fish with Louisa-

-Quiet reading time together-

-Making tacos with Dad-

-Christmas cookies with Mom-

-Today in the infusion clinic-

-Christmas Day cares with Dad-

-Christmas Eve carols by the piano- 

-Christmas presents with the DeVoe family-

-Aimee’s new elf Christmas jammies-

-Christmas Eve stockings-

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.