Saturdays events

Saturday morning we ventured out in the wagon to see Spiderman. They finally took him off droplet precautions and we could leave our roon. Friday night was interesting. Sean and I met the night nurse and then went to sleep. Around 1 am I woke up and a new nurse, a nursing supervisor, a resident, respiratory and lab were all standing over our bed. (Yes, I took an ativan) I looked out in the hall and saw a crash cart. Holy Crap! I reach over and touch Sean and he is breathing so I asked "what's wrong." The new nurse apparently replaced the earlier nurse had come in and watched Sean breathing and noted his respiration's were over 60 and he was retracting and shrugging his shoulders to breath. I am grateful the nurse was observant and concerned enough to call the rapid response team BUT Sean has been doing this all along. Only difference was he had been worse. Because it was Friday night the doctors who had been working with Sean were off service and the new ones that hadn't seen him before.  I put my glasses on checked Sean out and wasn't really concerned. He looked the same if not better. They insisted on doing blood gases, increasing his fluids and his oxygen. This really made Sean angry and he screamed bloody murder. They tried to do a CRP too but couldn't get a vein. I told them to wait and get it after he had a PICC line.  PCMC is funny, every time they do something mean to a kid they give him a stuffed toy. By morning we were lying in a pool of stuffed toys. When the day nurse came in she looked at the toys and said "rough night." Sean now has a hedge hog named pokey and Caterpillar name sticky and an armadillo that I named Streptococcus.

All these tubes make life a little more challenging and Sean is constantly getting tangled up in them. He's learned to use his toes. At least the toes that don't have a pulse oximeter on them.

This is the PICC line team getting ready to put in his line. His nurse couldn't get his IV to work and I was totally bummed that they were going to have to poke him again for an IV just to give meds to start a PICC line and then pull out the IV. I asked if they couldn't give IM ketamine before they started the IV but they said no. The anesthesia nurse was able to salvage his IV long enough to give the meds and get the PICC line in. About five minutes before the PICC line people came the activities people came in the room with a craft cart. Sean LOVES crafts. They gave him a wooden pirate to color. I was laying on the bed with him and he was coloring the pirate. Anesthesia was giving him meds through his IV to put him to sleep and he kept coloring, but the marker was no longer connecting with the pirate. I put the craft on the shelf, kissed him and then we had to leave for the procedure. We went down to the cafeteria and then came back up. It took about 70 minutes. I could hear Sean crying towards the end but it was that I'm on versed and ketamine cry. When they let us back in the room I kissed Sean and he said "where's my pirate?" I handed it to him and he started coloring like he had never stopped. The staff was laughing because the first thing he said when he was waking up and crying was "pirate" and they thought he wanted to be a pirate. Sean's always like that if you promise him a happy meal and he goes to sleep in the car when he wakes up he remembers. If you tell him in the morning he can go to Walmart and get a toy it is the first thing out of his mouth in the morning.

Coloring the pirate with dad after the PICC Line placement.

Frida came up to see Sean today. I got to see her baby, he's a cute little guy. Neighbor Ethan sent up a present and talked to Sean on the phone. Wendy and Emma came by to see him. Emma played in the play room with him and tye dyed a t-shirt. She thought it was so fun she said she wanted to get sick and come to Primaries.

Jenny came up in the evening and played with Sean in the playroom. The playroom is kind of like the "Camp Carnival" of PCMC. Sean had a great time in there. He felt good and had lots more energy. His color is good. I was really hoping they would let us go home on Saturday. I think if Dr Fassly had been there he would have but the new attending said he had to stay another night so they could watch him breath and make sure he could maintain his PO fluids.

Last night we both slept straight through the night. I slept on the pull out bed. That was the first time I hadn't slept in the bed with Sean and he was totally fine. It was a really nice night. Don came in at 7 a.m. and I am now at work. As soon as I get back to the hospital the plan is to go home and meet the home health agency at the house. YIPEE!!!! His CRP was down to 1.9 yesterday and his oxygen need is less that .25 liter.