What a crazy night (Monday).

Last night (Monday), my friend Zoe, our first outside guest had come by and just missed the vest followed by suction ritual. He was pretty upset because of it and I was calming him down when she arrived. He was so tired from the day that he pretty much fell asleep as soon as I laid the blanket over his little legs.

We were both hungry so we decided to walk the block into Westwood and get some food. We decided on sushi as there's a place that Mike and I walk to that's close and has everything priced 50% off. We were quick to finish and get back.

When I walked in, he was super upset and gnawing on his hand which he has been doing off and on the whole time in. Poor guy got his first teeth during his last hospital stay and probably is getting more this time, like he needs more pain now, right? I wasn't feeling so great from dinner. Something just wasn't setting right. The new crew on came in to weigh him and do his vitals. His weight has dropped almost 4 pounds! I told the nurse we really need to speak to the doctor about this. Between being off of food and his diarrhea he's diminishing. We really need to get him home!

Then the RT comes in to do his treatments again. This guy was a total novice, really nice, but just didn't seem on top of it. I helped him get the vest going and as soon as it started to shake Ian, I knew I had to dart to the restroom. I was so ill with what felt like food poisoning! I came out and tried to help him hold for suctioning. I'm able to hold him gently because he knows the process but when others try to do it, they are so forceful they really piss him off worse.

As we are going through the process I'm trying to hold it together and not doing the best job. Just as soon as the RT was out the door, in comes another two young girls telling me they need to draw his blood! It didn't occur to me that there was a reason there were two until the one was in the middle of it and not getting the best draw, continually poking the needle in and out. As politely as possible, I told her it might be a good idea to stop, let him take a break and have the other girl try in another spot. She got it on the first poke and, as expected, he tolerated it much better.

As soon as they left, the care partner comes in with the things to do an EKG! Through all this, he's so upset and I'm so ill. Very hard to tolerate. I literally checked the door to see if anyone else was out there waiting to torture my poor little guy.

Through all this, he still was on NPO, meaning they weren't letting him eat, but I did get the okay to give him his little sponge sucker dipped in Pedialyte so I was dipping and handing time and time again. They only had unflavored Pedialyte available so as soon as she gave the order, I ran down to the CVS in Westwood and bought all they had which was little packets to mix with water. To keep it interesting, I mixed up 3 flavors and was changing it up now and then.

After the very quick EKG, it was finally time to turn out the lights again. For the next breathing treatment at 3, the guy barges in and turns on the light again. I grabbed a flashlight and asked him to turn out the light. By the time he was done, Ian was awake and agitated. His sats started dropping as soon as the guy left. Then another de-satting episode. So odd though. Everyone comes in, 2 nurses, care partner, the 2 residents on and the RT and they were all just looking at him while I'm asking to have his oxygen turned up, grabbing the blow-by and trying to help the RT suction. It was almost surreal like I was in a bad dream. He wasn't working as hard as he usually does but he was still dropping in the 80's but would work up to 90 or so. I was concerned and mentioned we don't want to have any issues with his brain from this and one of the residents said as long as he's perfused there shouldn't be a problem. They finally called Dr. I and she had them turn up the oxygen even higher and he started to sat better.

All the while I'm so ill. I found out via texting with Mike that Lila was throwing up too! He thought she ate too many turkey meatballs but it was an odd coincidence that we were both ill at the same time. By 2 am they had soiled every sheet in the house, had taken a bath and had a shower. Crazy!

We finally got back to sleep around 4:30 and in comes a woman announcing herself loudly and flipping on the lights again just after 7! She's there to draw blood to test for Cystic Fibrosis. Why so early is beyond me. And the next day begins.