3.19.23 Update

Run down Aimee update for you. 

Aimee turned 14 last month and we had a special family birthday party courtesy of Aimee’s cousins Angelique and Alyssa. It was precious to have Aimee comfortably up out of bed enjoying time with those she loves. 

Another special memory, Louisa, Aimee, and I had a girls’ day while the boys went to a birthday party a couple weeks ago. We had a tea next to Aimee’s bed, watched a sing-a-long of Encanto, and painted everybody’s nails. Louisa and I did mud masks. 

In medical news, Aimee has had some different issues brewing. 

-She had another flare up of her trach infection, so she is in the middle of another 2 weeks course of IV antibiotic. 

-Her central line has been bleeding. We have found a solution of using a pressure dressing to stop it, but it is a reoccurring issue. Her labs do show some vitamin k deficiency so we will be doing an infusion of that next week, but the team is recommending that we bring her in for an ultrasound of her jugular veins to make sure that there is no narrowing happening. There has been some inflammation along her neck where the line enters the artery that has me a bit concerned. 

-Aimee has been retaining more fluid in her abdomen. Last week she was in so much pain when we put her in her shower chair that she kept trying to vomit, which caused a burst ear drum. Ugh. We are going to do a renal/kidney ultrasound at the end of this month.

-We have continued to have difficulty replacing her trach monthly. There is some type of obstacle beyond her stoma that we have to push through. It can be traumatic and sometimes bloody. Her pulmonologist and the otolaryngologist would like to do a sedated scope. We are torn. While it could prevent trauma and potentially prevent a serious future time of not being able to place the trach… we really don’t want to sedate her anymore. She has been through too much already. She is testing on our resolve not to take her back to the hospital for care!

In the midst of these decisions, we have also been meeting with another, larger nursing company to attempt getting some coverage of nursing hours. Her original company has sent us only 1 interview since we have been home! We did hire that nurse, but she only covers about 3 eight hour night shifts per month. 

It is a good thing to have some kind of movement on this front, but also so draining. Since we are running on this schedule, there isn’t a lot of mental capacity to give to training and paperwork. For now we have decided to try taking on a night nurse for 3-4 nights per week. I will start training her tonight. In some ways having a nurse can be a help, but in other ways the more caregivers the more drama and inconsistency. I am praying that time with this new nurse will eventually bring full sleep those nights of the week. 

Last news for this month is an exciting one. We are working on gathering resources and funds to put in a covered patio outside of Aimee’s room. In our long term plans for our property, we had hoped to put a patio there eventually (like in 10 years). Ed framed a doorway in the wall for that purpose. This late winter as Aimee has continued to be inconsistent, but stable, we decided this project shouldn’t wait anymore. 

The big hope is that Aimee will be able to comfortably sit in her wheelchair again, so we want to pour a concrete pad and level path for her to roll right out there. We would have power to plug her machine into and cover to help her with regulate temperature. 

The extra neat part is that it would be built right outside of her room so that while it is too painful for her to leave her bed, we can safely care for her constantly, while also being able to get fresh air ourselves. 

Ed is pricing out costs for a space large enough for her wheelchair and for all of us. After having been so limited to inside this past nearly 2 years, being outside even in a limited way would be such a balm. In fact, my daydreams are filled with glorious fresh air. 

2.2.23 Gratitude, Grief, and Grace

Today is the day. 

One year ago, Aimee was discharged from Children’s Hospital after a long Summer, Fall, and Winter that left her on a ventilator and IV nutrition. Our goals for Aimee at that moment were to get her home to celebrate Christmas, to keep her comfortable, happy, and home. We have succeeded beyond our dearest hopes. She has been home. She has had happy days. We have been together as a family. 

What happens from here? Well, Aimee is on a combination of hospice and palliative care. This means that we have access to the hospice services, including comfort measures and an ability to allow a peaceful passing when Aimee is ready. It also means that we can continue to choose treatment care as much as we feel is in Aimee’s best interest. This unique combination is available fairly recently to kids in our state. For our family, for Aimee, this means we are choosing to not take Aimee to the emergency room or to have her admitted. We are treating any infections or issues at home with the support of hospital guidance, IV antibiotics, and intensive care. When she is sick or in pain, we are continuing to aid her in getting back to comfort as much as we can. But it is very unlikely that we would take her to the hospital for care. She wants to be home in her bed, so here she will be as much as possible. 

I cannot distill our feelings into a blog post for you to read. I cannot understand them or express them to myself even. This is beautiful. This is grueling. This is intense. This is peaceful. There is sweetness and fun. There is exhaustion and pain. We are living in an in-between place and we don’t know how long our stay will be. Truly, we are in a separate world here. I can barely see beyond the walls of my house anymore. Even the beloved outside and garden that I so love… it is a gray distant land that is unrelated to this space.  

Here we sit together at peace, at grief, and in celebration of a year together. 

1.23.23

Well it has been one year since I (ED) last wrote a blog post (1.21.22) 😳. How are you 😆? I looked back and a year ago we were hoping Aimee would be well enough to go under anesthesia to get her central line. Today we are in the infusion clinic using that same central line to get her next dose to help with her bone density. Watching the nurse draw blood today from that central line makes us so thankful for it. Aimee is such a hard poke, but she almost never has to get poked anymore and that’s really best for everyone. 

So to catch you up since our last update, we had Thanksgiving, my back surgery, Christmas, New Years and oh by the way January is almost over 😳. We are rapidly approaching our one year mark of being home from the hospital. Man that feels crazy! When we left the hospital, the care coordinator told our hospice nurse we would be back within 2 weeks, well I guess she was WRONG! Side note: we really liked the care coordinator and she did a lot to help us get out when we did. But to have kept Aimee home for a year straight is down right impressive. Granted, we have refused/ turned down multiple offers from different clinics telling us that we could bring her in for treatments that we chose to just do ourselves at home. Home, where we are all at our best. 

What we have done in the past year has been grueling and never ending, but it is SO much better than being at the hospital. Because of my back surgery we ALL got to be home through the holidays. I can’t even tell you how much we all needed that. Last year felt like playing ping pong from the hospital to home and then back again during the holidays. To be able to just be together was really, I think for me, healing. 

It is really hard for me to bounce back and forth from home to work. Not so much physically as emotionally and mentally. I want to focus on the task at hand, but it’s hard. I’m constantly thinking and responding to what is going on at home while I’m at work and sometimes work issues spill over into the time at home. This has definitely been one of the easier jobs I’ve had in being able to let go when I’m not on the clock, but it still hard. Hard not to snap at a disgruntled customer complaining that I’m too early or late for an inspection when in the back of my head I’m think you’re lucky I even showed up at all. Of course, some of them were probably hoping I wouldn’t, but that’s a different story 🙃. 

I managed to go back to work last week after being released by the surgeon on light duty (and yes it gets lighter 😆). After only one day of being back to work, Aimee’s enteral med line access broke and we had to take her in on Thursday to get it replaced in the IR. So, we will try again tomorrow for me to go back to work. 

I am doing great with post operative recovery. Surgery went well. I spent one night in the hospital and got to go home walking with a cane the next day. Rosa did an amazing job juggling Aimee’s care and mine while taking care of the other four kids too! (She’s a rock star if you haven’t met her yet!) We had lined up help for the first two weeks after my surgery to help with Aimee and really that was what we needed.  

I am in such a better place physically already. I have been working with physical therapy since about three weeks after surgery and it has felt great to be able to strengthen without the nerve pain shooting like a lightning bolt down my leg. To be in constant pain is horrible! I am still building my strength back, but gaining every week. Thank you all for your prayers and support! 

Following her IV antibiotic course, Aimee had really a good couple of months, which was awesome during my time of recovery and the holidays too. She continues to throw us curve balls and has stuck to her motto: Consistently inconsistent. We can’t decide if she’s doing better or if we are just better at handling it. Two weeks ago, she was struggling with Tracheitis again and had lost her energy to fight so we started another course of IV antibiotics. The night we started, I came into her room and she looked like she was in the hospital, totally exhausted and wiped out. That feeling came over me of being in the hospital and reminded be of how thankful I have been to have her at home. Last week when the medication tube broke it really hit me how MANY different systems we are relying on to keep Aimee home. If even one of these systems break down, it leaves me feeling pretty helpless and, honestly, nauseous. 

Overall, I think we are doing pretty good, all things considered. Your support and prayers are much appreciated and needed. We are headed into another new season as I transition back to work and Rosa continues Aimee’s care and homeschooling the other kids. 

11.21.22 Fall Update

Following the 2 week course of IV antibiotic last month, Aimee has done amazingly well. She has recovered quite a bit of energy (comparatively speaking) and has had several playful, happy days. Her tracheitis has returned, but it is so far mild and manageable. I did talk with the pulmonologist about going forward and he said that since we did so well with the IV antibiotic at home, he would have a low threshold for ordering it when the infection again becomes unmanageable. Generally they would be hesitant to repeatedly use it, but for Aimee it is almost a comfort med and is certainly a quality of life med. It may not be “good” to use long term, it may not work long term either, but the goal is as many comfortable, happy at home days as possible. 

Speaking of comfort, we are fighting to help Aimee reduce her weight that the TPN has packed onto her. She is comfortable in her bed very reclined, but sitting in her wheelchair, bathchair, or even on the couch has become quite uncomfortable. As the other kids are growing, everyone piling into Aimee’s bed for family time is becoming less practical. While I am so grateful that she is comfortable in bed, I would love for her to enjoy sitting by the christmas tree as she has so loved in the past, or be able to sit in her chair to be a part of family activity. Unfortunately the calories in her TPN have already been reduced very significantly without effect. She finally has stopped gaining weight at 600 calories a day… we are presenting our argument to her nutritionist and GI specialist to reduce even farther. They are quite hesitant as she is already as low as they feel confident without causing any immediate danger to her organs. They are running more calculations and we are hoping there will be a solution. As the hospice nurse said today, her face looks like she has been put on steroids. :(  

All in all this past month has been the most stable time period for Aimee since last summer. These days are what I prayed for all through those long months in the hospital. We hoped for home, for comfort, for happiness, and for health. These days we are living right now are the fulfillment of that wish and we have to live them without thought for the future. Today we are making memories. 

Two prayer requests, beyond that the above would continue:

Ability to cope, to keep going. We are worn down. As well as Aimee is doing, she still requires intensive around the clock care and the weight we carry is unceasing. I am finding myself dealing with sensory issues and just weird side effects of either lack of sleep or PTSD or whatever all this is. We all, kids included, have been feeling deep, deep pain. Sorrow. Feeling that we have less of Aimee than ever. We worry about each choice we are making and all the ones we made before. We vacillate between gratitude for being here and overwhelm at still being here. 

Another prayer request, Ed is having a fusion done on his lower spine in early December. We chose this time for his surgery as our dear niece Alyssa has committed to helping us with Aimee’s care through the winter. Once this season is complete, we have no guarantee of consistent help, so we feel that we need to go forward with surgery now. I am praying for success, for Ed’s pain to be greatly reduced so that he is no longer constantly limited by it. And praying for superhuman stamina for me as I go forward with my teammate sidelined for a time. I am praying for a peaceful season of healing and restoration for Ed. 

Last and best, a photo dump of recent cherished moments:

And for extra, the younger 4 kids learning and living life:

9.29.22 More

This past couple of weeks Aimee has had some pain episodes that seemed to be associated with her medication dose times. Her GI doctor is helping us to cut back some on her medications that are put into her intestines through her j-tube. However, it is a tricky game. We don’t know how much she is actually absorbing really anymore, but many of the medications are to help her be as comfortable as we can manage. Yet… they could be causing discomfort by their sheer volume. They are also to keep her intestines working as much as possible, which in turn prevents pain. Makes my mind spin to sort out. 

Last week her reoccurring trachea infection really flared up and we had a couple of days with a lot of treatments, a lot of clogging the vent, and increased ventilation and oxygen needs. I wrote a lengthy request again to our pulmonologist to ask that he consider putting Aimee on an IV antibiotic. And he agreed to do it this time! They did try to encourage us to bring Aimee inpatient, but we had the palliative team, the concurrent/hospice team, and the GI team all rooting with us. We want to be home. There is a significant increase in risk since we are giving the medication 3 times a day for 14 days. This means an extra 42 line accesses of her central line. It has been a bit of a learning curve for us to figure out, however, we had already been entrusted with accessing the line extra for fluid bolus between her doses of TPN and lipids. We were confident that we could do it safely. 

This strong antibiotic seems to be working well and Aimee’s symptoms have improved significantly. She has had more energy and also slept more deeply than we have seen in awhile. She has been interactive and playful. She also seems to have less fluid retention and inflammation. In addition, she may have had an ongoing bladder infection that appears to have cleared up as well. She is on a constant antibiotic into her j-tube to prevent UTIs, but, as I mentioned above, we are not sure how much of it she actually absorbing anymore. As our hospice nurse said, this IV antibiotic is a good reset and knock down of any infections that could be happening in her body. It can be very difficult to tell if she has any infections since her body temperature fluctuates all over the place for no apparent reason. Just in the past day she has been going up and down between 94 degrees and 98 degrees all while in her bed in a temperature controlled environment. 

This girl keeps us working! 

If you could pray for us and our continued health, we would so appreciate that. We are grateful to be here, grateful to be able to do all that we are doing, but it is a lot. I love taking care of Aimee and seeing her sweet smile return. I love learning with the kids and teaching them. Yet, we both feel numb, dazed, and almost sick most of the time. Especially since we have added back in school. I am hoping for the energy to be able to have connection while we are here together, instead of merely bouncing from task to task, surviving. 

Pray for our health. And for joy in the journey. 

9.6.22 End of the summer update

Aimee is doing quite well right now. Right at this moment as I write this. Every day is different, with ups and downs, highs and lows. Some very sad, painful times, but still more calm ones. She is currently finishing her 4 week cycle with the inhaled antibiotic, which really helps to keep her trach infections damped down. When she is off of the antibiotic for 4 weeks, it is a struggle with the round the clock intensive care. She is too exhausted during the infections to interact. So, we are savoring these days with her little smirks and occasional beautiful smiles. They really keep us going. To know that she is happy, comfortable, and home brings such contentment to my own heart. 

We had a few highlights this past month. We celebrated our 17 year wedding anniversary as a family with a fire and s'mores. It wasn’t glamorous, but it was sweet and memorable. Any moment that includes all seven of us feels weighty and important. It is tempting to wallow in the disappointment of what we can no longer do. We can no longer go to bed together at night or go on a date. We can no longer work together outside or grocery shop together or take the kids somewhere fun together. Yet, we CAN work together caring for our family and doing our best to hold on through the storms together. So grateful for Ed, for us. 

We also celebrated Louisa’s 3rd birthday!? I KNOW! How can it be!? She phenomenal. And wild. 



We were able to enjoy several different visits with family this month too, which we all loved, but it is especially a big deal for the kids. Aimee wasn’t awake very much to enjoy many of the visits, but she did have her own private concert and her window open to hear cousins playing. 







We had the big heartbreak last week of having to put down our wonderful milk cow Dottie. She had been with us since she was a calf 7-8 years ago and was the backbone of our little homestead. After her calving last month, Ed worked so hard for weeks to nurse her back to health with the help of a vet. Yet, in the end, she could not be saved. Such an exhausting, emotional experience. And so disappointing. Her bull calf Ernie is doing really well.

The weeks with the cow, particularly the end, really brought up all of our emotions about Aimee. We have struggled this past week to get our feet back under us and feel steady again. Life is not forever. Each day brings a new mountain to climb or valley to cross. We aren’t guaranteed good weather and are not promised how long the journey will be. We must keep looking forward for signs of hope, breaks in the clouds, the wayside dandelion, or the perfect fallen tree to rest. Onward we go. 

As we do head forward, we find ourselves with even less help than when we last posted. Our hopes for another nurse did not materialize and our other nurse left. We do have one wonderful night nurse, but she doesn’t work often, 2 nights this month. We are trying to sort out how we can possibly do more with less help and little sleep as we add back in homeschool and Ed continues to work. I love teaching and learning with the kids. I love the intentional time together. What is it that can give to make room for this added focus? It feels like everything left is too essential to cut out. Every one of these days I am so grateful that Ed and I worked really hard to set up systems for Aimee’s care. We are on the same page and super consistent with each detail. And we must be. This is crazy complicated.

At least we do have Louisa to help.

School has begun, but we did finish the summer with a few outings. One of us stayed home with Aimee and the other went adventuring with the younger four. Ed took them to the fair. I took them to the zoo and to the beach with friends. We have these memories in the midst of the uncertainty of our day to day life. 

Thank you for cheering us on as we continue on the journey.