8.2.22 Summer

Aimee, Ed, and I are spending today at the hospital having different tubes replaced in Interventional Radiology and a zoledronic acid infusion done for her bones. A good day for me to give an update since there are several pauses as we wait for bloodwork to come back, meds to be infused, ect. 

While we are here, Aimee is working on her biggest bubbles.

Today is 6 months since discharge. Wow. I never would have thought we could keep her this long straight at home. I don’t think anyone would have bet on the odds. I would say that overall Aimee is improved compared to 6 months ago. She is comfortable at home generally. We are mostly able to keep her out of pain. She has had multiple really happy, laughing days. We even got a video last week of her laughing while I bagged her. Her ambu bag makes a squeely sound when compressed and it tickled her funny bone. 

She hasn’t become any less intense and complex, actually increased really. She is more variable with more difficulty regulating temperature and fluids, but we have very much improved our routine and could do a lot of it half asleep… okay, we do a lot of it half asleep. 

Speaking of being weary, thank you all for sharing your contacts in nursing and caregiving. At this point we have not been able to actually connect with more help, but we do have one potential nurse and one family member going through the hiring process to be a caregiver for 6 months this Fall/Winter. Neither would be night help, but they are potentials for more day help coming over the next couple months. The restorative summer that we had hoped for did not happen though. 

In wonderful news, the younger kids have been able to have some summer fun. A couple of family members have been helping us take them out of the house for adventures. A neighbor gave us a wonderful playset. I can see them out there playing while also being with Aimee! Last Friday, a friend helped me take them on a hike while Ed was home. Next week we look forward to our much anticipated annual family camp. I’m grateful that they have had positive memories and fun this summer. They deserve the best, sweetest childhood. 

On the homestead, we brought new piggies home and are gearing up for the birth of a new calf. We are looking forward to the great enjoyment of having a cow in milk again soon. No garden this year and many things are in disrepair. We require frequent reminders that letting go of organization, normalcy, and order for this difficult season, does not mean that we will never be able to have them again. Isn’t it difficult to have grace for yourself?  Doing our best right now does not mean what it did 2 years ago. And it will change again. 

7.18.22 Help Needed

Hey. We're still here. Managing. Aimee is here. Managing. It isn’t much different than being inpatient. It is round the clock attempting to regulate temperature, fluids volumes in and out, respiratory care, trach infections, infusions of medication and of IV nutrition, pain levels. Except, we’re together… and we have less support. 

Last week one of Aimee’s providers asked me if this is sustainable. She offered us the option of bringing Aimee back inpatient for respite. What we are doing is not normal. By the books, Aimee “should” be in the hospital for multiple reasons. We are off policy rule breakers. It isn’t truly sustainable. 

Yet, we both feel it is right to fight for Aimee and for our family to be together. It is worth doing so that she is comfortable and as happy as she can be. It is good for our kids to see us sacrifice and fight for someone who cannot fight for herself. 

However, we need help, night help especially. This Fall when school begins again, we will need day help too. Even just someone to sit with Aimee and respond to low level cares so that we can focus on the other kids or get sleep. We are not looking for anyone to manage her care, just someone to keep her safe while we are on site, but in another part of the house/property. We want to do all of the high level care ourselves so that it remains consistently safe, but someone to reconnect Aimee’s vent when she pulls it off, to adjust her position and blankets, to suction her, to talk with her/hold her hand, empty her ostomy, flush her replogyl, do airway clearance, change pump batteries, ect. All tasks that we can train someone to do. 

Unfortunately, there is a caregiver crisis, particularly in our county. There are no available nurses or caregivers of any sort. We have only had one interview in nearly a year! We currently have one day a week covered and 2 nights every 1-2 weeks. Do you know of anyone who is trustworthy and caring looking for a job? We have 40 hours per week available through DSHS for a caregiver. We also have 40+ hours of skilled nursing hours available. Day or night options.

Aimee is a lovely, sweet 13 year old patient. She likes to listen to music and audiobooks. She loves to hold hands, snuggle her siblings, play with textured objects. She smiles and gives side eyes. She is fully dependent on round the clock care. Most days she sleeps the bulk of the time and she is on concurrent/hospice care. On paper she can be intimidating and she is very medically complex, but it is a peaceful, low drama job. Her space and supplies are very organized. Her room full of natural, indirect light. Siblings are schooled at home, well-behaved, and loving. Mom stays home. 

6.2.22 4 months

Today we crossed a new milestone, 4 months to the day at home following our 4 months to the day hospital stay. 

As a part of beginning to process all that has happened, I wrote out a short, snapshot summary of this past year. 

May 2021

Aimee had an ileostomy surgically placed, which is very similar to a colostomy, except it is a stoma into the small intestine. She spent a week in the hospital. 

Aimee was home for 2.5 weeks during which time we took all of the kids on our first whole family getaway for a few nights. It was a big, wonderful deal and would not have been possible before the ileostomy surgery. 









June 2021

Aimee had a full spinal fusion and spent another 10 days inpatient. We were excited to bring her home so quickly. Her growth rod experience in 2017 made us very worried about the wound healing, but the new closures used were much more effective. 

July 2021

On our 5th day back at home, Aimee became severely dehydrated. She was dumping out fluids and we had no way to stop it. The spinal fusion had severely changed her gut function. We took her into the ER for what we thought would be a quick IV fluid bolus and turned into a 6 week stay trying to get her hydration under control with medication. During that stay, Aimee was requiring more and more respiratory support. She was having more scary episodes where she would stop breathing completely. She was awake less and less. And she had a serious urinary tract infection while there as well. 

 

August 2021

We finally brought Aimee home right in the middle of our annual family camp. Aimee had a wonderful few weeks. 

October 2021

After 6 weeks at home, Aimee had regressed significantly. We could barely get her off of bipap long enough to do cough assist and other necessary airway medications. She had barely any awake time. And then we had to take her back to the ER for a middle of the night intestinal surgery as her gut had completely stopped and ended up folding over on itself. She was in sepsis and had pancreatitis. She had another bad UTI. It was a mess. She spent a month in the ICU. 

November 2021

Aimee was transitioned out of the ICU to the medically complex vent floor. We had to learn how to take care of her now. She had a trach placed and was now ventilator dependent. We also discovered during this time that Aimee had 2 broken femurs, 1 mostly healed.





December 2021

We made the difficult decision to have a more permanent tunneled central line placed for longterm IV nutrition. Despite much patience, Aimee was not able to take nutrition through her gut anymore. Her intestines were considered to be failed. Part of this time was major decisions about the goals for Aimee’s care. Our focus shifted to getting her comfortable and getting her home. We made many decisions that would allow for less time at the hospital and less pain, but would not focus on cure, normalcy, or long term life. We wanted to allow Aimee to have as many happy days at home as possible rather than just more days on earth with pain. 

January 2022
By January we had made all kinds of efforts to get the replogyl stomach suction out, but without success. We fought to find a way to take her home with it. We pushed hard to get Aimee home despite not having any extra nursing hours covered. We would rely heavily on family help and pull all hours ourselves to keep her stable. We went home under the care of hospice and with their concurrent team providing support. 

February 2022

At last, discharge finally came and we brought Aimee home. She is followed closely by both the hospice team and the team managing her IV nutrition. She has bloodwork done every other week and there are frequent adjustments to make. She now requires round the clock intensive care and has since given us some deep scares. Her autonomic system is becoming increasing variable. She is stably unstable. Yet, we are all here together. Home. 

To Present

I am so proud of us that we have been able to keep Aimee home for this 4 months. The care coordinator estimated to hospice that we would be back in a week. It helps that we have always tried to build trusted relationships with Aimee’s providers. Our pulmonologists and gastroenterologist have been a huge part of keeping us here.

We have certainly improved and become more efficient in our routine. We just finished training night help for the summer, which will hopefully allow us to begin some sort of recovery of our own health. Unfortunately, we are also losing the part-time day nurse for the summer. 

What a journey this last year has been! Ed and I were talking about how life currently feels like being out in an unknown ocean. Just as we start to paddle another wave pulls us back down. Just as we feel we have a chance, here arrives a new disappointment, new setbacks, or a new intervention is added. Day to day life has trauma and joy, sorrow and peace all tangled together. 

And onward we go, together.