This afternoon Sarah and I went for a walk around the hospital. Sarah was in her chatty mode. We talked about her school, she told me about a friend who is not always the nicest person to be around, she was telling me about how she was exchanging parts of her lunch with her friend, since she didn't like the new breakfast bar I had sent with her to school. From school we got to talk about her brother. I asked her how she was doing with her brother being in the hospital, since some stays are harder on us than others. She said she felt fine, since she can come and visit him when she likes. She doesn't like the bi-pap being on, since she can't cuddle as well with him. She wants to come back and see him this week, but not Friday because she has plans with her best friend. She asked if I remembered the time Jacob was in the hospital for 50 days, and she only got to see him three times? I said I will never forget that stay, since I wasn't sure I would be able to bring him home. She wondered why he was in that time. She didn't remember that he had been that sick, since she was so little back then. She talked about her classmate who lost her brother last year. She said her friend doesn't always talk about her brother anymore. She asked if I think Jacob will be in the hospital 50 days this time. We talked about how it is to loose a brother, and how we hope Jacob will be in our lives for as long as he possibly can. Sarah thought that he should stay with us until she turns 90. I said that would be fabulous, but I doubt his disease will let him. She agreed with me. I said I don't know how it is to be the sister of Jacob, and acknowledged it can't always be easy, but I also told her what a compassionate, strong woman she is turning into.
A twenty minutes walk with my girl was the absolute highlight of today with very little to no change in Jacob's health. I am amazed how far we have come, and how easy those very difficult discussions come today compared to only a few years ago. Sarah gets it all, and she can actually verbalize her and my biggest fears. We can talk about it, and I know she will be fine to go on with her day. As soon as we had finished our walk, she was ready to explore the gift shop and have dinner in Jacob's room. She sneaked in a shower in the PICU tonight, since she didn't want to miss a minute of the TV show the Voice when she got home. I asked her if she was comfortable to take a shower here, and she just told me it wasn't the first time. She did point out that the hospital towels are not great quality though. I simply love our girl to the moon and back. She brings light and laughter to any day.
Our Jacob is having a hard time getting a break. He desats on the nasal cannula, so truly needs the bi-pap around the clock right now. His stool is crazy due to him being on 2 IV antibiotics, and everyone is watching it closely for signs of colitis. He is getting all his stool replaced by IV fluids. He still has quite a cough. He has had a high heart rate for six days straight, and we're not sure what of all possible factors is causing it, but it is concerning to everyone.
I know this will be a longer stay. I have settled on "Jacob time", whatever it will take to get our boy back to his baseline once again. I brought my own cup in today, since I was tired of drinking out of paper cups. I have my egg crate mattress and own blanket for sleeping. I bought an extra bottle of contact lens solution, so I don't need to bring it back and forth every day in my overnight bag. I am moving in. We're on Jacob time now.