2.27.22 Thirteen Years

Aimee turned 13 this weekend. We spent the time low key celebrating in an Aimee style. Movie night in Aimee’s bed. Dance party. Chocolate cake. Audiobooks. Decorating with homemade window clings. A nap with Dad and a nap with Mom. Painted  matching toenails for us 3 girls. Lots of music. We were exhausted honestly and just tried be present. 

Aimee is doing okay. Still on extra respiratory support. Feeling like we are heading in the right direction though. We are here doing our best. 

As I was laying in bed with Aimee yesterday, I was hearing the in and out of the ventilator, the rumble of the gastric suction. Wallie was bringing in lego sets that he created. Later Louisa helped us give Aimee a shower. I realized that we essentially have a hospital room in our home where Aimee is. We have the freedom to bring the kids in and around her continually, but really it is like she is in the hospital in a lot of ways. We spend hours around the clock with central line care, hanging TPN, airway clearance, trach care, ostomy care, urinary catheters, administering meds through a syringe pump, flushing the gastric suction, changing dressings, positioning, cleaning, suctioning. It is not at all like thriving at home as we have known it before, yet we are so grateful to be in a time where this is possible. 

On that note, thank you friends for being incredibly gracious and patient with my responses. My cup of social energy is quickly drained talking with specialists, nurses, homecare companies, pharmacists, ect. I wish to be able to be a friend and I am praying that you will still be there when I can be one. I miss being a friend. This daily load is as much as we can do and there just is barely enough energy to do it every single day. Every night I stay up until 1-2 in the morning to do Aimee’s care. Ed gets up through the night half of the week and his mom helps during the night the other half. He wakes up to do the early shift. He has cut back his hours at work so that he can manage with nights of low sleep. We are praying for a night nurse or two to help us, but there have been no additional nurses at all available. 

Really, truly I am thankful to be the one doing Aimee’s care most of the time. It does flow out of our love for her. In great gratitude I can say, there is no better hospital room. There is no where else we would rather be surviving.