Routine

I know, a blog post is way overdue. I am mentally and physically exhausted but I know people want to know how Manny is doing.

I can’t believe it’s already Saturday. It’s like the twilight zone in here. I thought I was going to be bored and have so much time on my hands. WRONG!! I barely have time to eat and I pass out at night. I’m trying to keep Ben entertained all the time and the hour break I have, I either shower, catch up on emails or blog.

The first couple days were very hard. We had some major adjusting to do and there was honestly a moment where Ryan and I thought we’d have to say, this isn’t going to work, and pack up and go. But we are learning to take it day by day. We quickly had to establish our own routine with the doctors.

Usually when a CFer comes in they are sick. However, Ben isn’t really “sick”. He’s only in for antibiotics. They wanted him on a strict treatment regiment. They wanted him to Xopenex 4 times a day, vest 4 times a day, take Hypertonic Saline 2 times a day and also do Pulmozyme once a day. They wanted him to do his inhaled treatments first and then vest. That’s over four hours of him sitting still to do treatments. Not an easy thing for a toddler to do especially when they’re not in the comfort of their own home nor are they used to it.

SO I spoke up and told them we were not going to be doing 4 treatments a day. Between meal time and playroom time, it just wasn’t going to work. We can only go to the playroom a couple times a day because he have to avoid another 5-year-old CFer here. I want to make sure he gets as much free time as possible and with four treatment sessions, it wasn’t happening.

The next issue was wearing a mask. They wanted Ben to wear a mask every time he went outside his room. A 17-month-old wear a mask?! Yeah right! I couldn’t even get the loop over his ear. Luckily, Dr. N comes around every day to see how we are doing. I expressed my concerns about him not being able to wear the mask and so he spoke to the nurses and told them to back off. It’s not hospital policy only strongly recommended. Like the treatments, I understand where they are coming from. However, Ben is different and first and foremost he is a kid with lots of energy.

UCSF is also a teaching hospital so we have anywhere from 5-10 people coming into our room a day. We often have groups of med students outside our door learning about Ben. It’s great because I can learn some new things. I try to listen in as much as possible. But this also means that we have a lot of people talking to us, telling us the same thing over and over. When our nurse first brought in Prevacid for Ben to take (which he normally doesn’t) I asked why he was being put on it now. Our nurse didn’t know and said she’d pass on my question to the doctor. Well, for the next day and a half I had people coming in saying, I hear you have an issue with the prevacid, and I kept saying, No I’m just wondering why he’s being put on it now(I felt like Ron Livingston in Office Space, “What’s this I hear about your TPS reports?”) ha! I realize that doctors need to start some where and I don’t mind. It’s just taken some getting used to.

I can honestly say that everyone who comes through the door comments on how adorable Ben is, how big he is or how big his feet are. He is charming the pants off everyone especially the nurses. He has been amazing through this. He his able to be “unleashed” for a couple hours a day and we use that time to run him around.

I want to thank everyone who has sent us a package or note. Ben has received four in the last two days! We are having no trouble keeping him entertained especially during treatments which is a huge stress relief for Ryan and I. People have been so generous that we are sharing some of our new stuff with the kids on our floor. We plan on leaving behind most of it, to the kids that are here or in the playroom for kids to enjoy for time to come.

We are on the pediatric oncology floor so when my spirits are down, I look around at the fuzzy-haired, pale, children around us and realize how truly lucky I am. Dr. N, our nurses, and our multiple doctors have been amazing and we are so thankful for a fabulous group of doctors looking over Ben.

Here are some new pics. Our scenery hasn’t changed much :)