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.
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.
