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.