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.