The downs and ups of the ICU

This picture sums up the past week. Aaron gets very nauseous and his oxygen sats drop. When he gets sick, I rub his back.  He likewise rubs Pupsters back. Aaron says "it's always nice to have a good friend by your side."

Neither of us are very excited to be in the ICU. Aaron misses his friends on the BMT unit (PT, OT, speech, music therapy, child life volunteers, and familiar nurses). He also misses hearing the little boy who was our neighbor. We nicknamed him "the cat" because when he cried he sounded like a cat. Aaron walked down the hall one day and peeked in his window. The two boys were waving to each other and saying hello. Aaron does not like the every two hour vitals in the ICU (BMT is every four hours). I don't like hearing the code blue alarm everyday and seeing the staff run by to try and bring another child back to life. This triggers PTSD.  I relate what we have been through as being in battle (I hope this does not offend anyone who has been in war). Everyday we see kids fighting for their lives. They have horrible wounds, horrible pain, and even worse is the anxiety because as they get older they start to understand.  Every day these kids go to bed (often not sleeping well) and wake up hoping a new day will bring a better day.  Often, the new day is not better. Aaron has been in battle for five years. But still we keep hoping. My inspiration this week is "let faith change the endless worry."

There has been a remarkable upside this week. Aaron is off the high flow machine and back to a regular nasal canula with 1.5-2 L oxygen.  This level is still much higher than we want, but Aaron is more stable. His chest is not heaving with each breath and his nostrils are no longer flaring. The team is even talking about Aaron moving back to the BMT unit today or tomorrow.  The ICU is phenomenal. The nurses are top-notch. When you press the call button, a nurse shows up within seconds.

Overall, Aaron is feeling better. He has been cooking for his dogs again. He even got a visit from music therapy. His old music therapist, Caitlyn, recently left the hospital. She told the other therapist that the patient who has touched her heart the most and she will miss the most is Aaron. We also love Beth. She has an app where Aaron drives a train through different scenes and picks up passengers. She plays the guitar and sings along to what Aaron is doing. Her voice is absolutely beautiful.

I had a much needed conversation with one of Aaron's doctors from day hospital.  He asked about Aaron and I told him.  I said that things have been bad and I fear I may lose him soon. I am willing to do what I can to save Aaron, but I also don't know when I am supposed to say "enough."  The doctor assured me in his experience that Aaron will let me know when it "is time."  Right now Aaron is mostly happy and definitely fighting. I hope the doctor is right. I also hope I am not faced with a time where I have to make such decisions.

One of Aaron's favorite songs is The Old Log Train by Hank Williams. The song sings about a man who hauled a log train until God called him to Heaven. Aaron cried as he was sad the man had to go. I have been telling Aaron that people are happy to go to Heaven. The man singing was not sad about his father in heaven, but excited that he will see him again. I am glad we are having talks of heaven, but Aaron has shown he is not ready to go anytime soon. He has a lot of struggles to overcome, but he is not done fighting.