4.7.23 GI

I spoke with Aimee’s GI specialist this afternoon. She is concerned that Aimee is having intermittent volvulus (a volvulus is what led to her emergency bowel surgery in October 2021), which may or may not have been set off by the recent sedation. We have agreed together with her that we will treat Aimee over the next few days at home with added IV fluids, nausea medication around the clock, and decompression attempts, but not bring her in for more invasive measures. 

No matter what happens, we sure love our pure gold Aimee. 

I am so grateful for each hand squeeze. 

I hope she feels our love. 

4.6.23 Concerns

Aimee has not been doing well this past couple of days following her short sedated procedure on Monday. Lots of holding of fluids in her abdomen and then dumping. Retching/stomach spasms. Hypothermic. Higher than typical resting heart rate. Generally not feeling well, lethargic or irritable. We are concerned. It may simply be that the sedation has messed with her gut. We’re waiting to see what clues she gives us next. 

4.3.23 Results

Quick results post.

Aimee did well through her sedated scope today and was so happy to be leaving the hospital for home. 

The procedure went well, though there is always some drama with bringing in such a complex patient. Unfortunately, we didn’t really get the results that we had hoped. The Otolaryngologist was able to cut out a ridge and a bit of granulation tissue, but said that the real issue seems to be that her stoma is very tight. In order to correct this, she would need to have a surgery to remove the tissue between her skin and her trachea, essentially it would be like getting a new trach again. It would require recovery in the PICU, ect. This is currently a “no” for both Ed and I. 

However, the doctor is hopeful that if we monthly replace her trach with a brand new one (instead of sterilizing and reusing them multiple times) that we will be able to get it placed with less trauma. We won’t know until we try with a new trach next month. If this works, we would just need to present arguments to the insurance company for a new trach each month rather than a new one every 5 months. 

I had hoped for a better resolution than this, but I am grateful to know what the problem is and so thankful to have brought Aimee home again. It was a long exhausting day and Aimee bled quite a bit, but she is with us.

Also, I met with the urologist this morning following up on her renal ultrasound. She has a lot of debris in her kidneys and a decent size stone in one. At the moment we will just monitor this and, as long as there are no symptoms, repeat the ultrasound in 6 months. 

4.2.23 Scope

Ready for a little heart to heart? A potentially confusing mess of emotions? Great, then keep with me. Ed and I are like two zombies right now going through this round-robin over and over.

I want to admit two weaknesses. One, I am not strong at expressing emotion. Two, communicating takes so much energy for me. I am recognizing these less strong areas and sharing them with you, because it may seem like everything is under control, but it is an illusion. We have created really good routines that keep us afloat and we have sweet moments together, but it doesn’t stop. And there are times when we are spinning and spinning... I am left without words to communicate with people that I care about. I regret this. Talking is hard. I do care. 

We did have a night nurse start 2 weeks ago. Yes, that sounds hopeful and promising. So far it has been exhausting and difficult. Training, working with the new nursing company, and honestly just talking with the new nurse through her shifts… I am bone dry. I want to just throw in the towel and send the nursing company packing, but I’m trying to dig deep, make it through the first month, hope it will mean 3-4 nights a week with uninterrupted and full sleep. 

And then, while Aimee has been doing well since her last round of IV antibiotics, there are a couple challenges that I hinted at in my last post. Renal ultrasound last week had some concerns (appt to discuss with urologist is in the morning), issues with bleeding at her central line (vitamin k infusion seems to have resolved it, hopefully), and currently most pressing, issues with her trach. We change the trach monthly at home, but recently Aimee’s trach changes have become so scary that we feel that we can no longer safely put off doing a sedated scope. We are taking her down to the hospital tomorrow. 

It may not seem like a big deal, but it has been the most difficult decision we have made this past year. We are both emotionally and mentally struggling with it. If we want to continue being peacefully at home with low amounts of trauma, we must, but I feel sick thinking of wheeling her towards the surgery center, of walking the halls with an empty wheelchair again. All of the days that we were apart come back. My whole being revolts against risking it. We cannot, we must. Oh my girl. I thought I would never put you through any more of this again. Yet… 

We will take her down on Monday for what is only a day procedure. In terms of what she has been through, this is not a big ordeal, but the decision to do it has been. We had made a firm line. We would not put her through more sedation. We would do no surgeries. We would only take her in to stop pain and to do upkeep on the systems that are necessary to keep her at home. Yet… 

We are praying that there is an obvious issue that the otolaryngologist can simply remove the tissue that is obstructing the trach insertion or widen the airway in some other way. And that this procedure does not set Aimee back. 

For the last note, here is Aimee enjoying our weekly family movie last night. 

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.