Rituximab Friday

Friday started with a bang......accident on the freeway and it took us almost 2 hours to get to the hospital. Doesn't make for a great start when you know you have 6 hours of chemo to get through. Plus we have to drive two cars so I can go to work.

Haven knows what to do at the hospital. She goes in immediately and gets set up to have her vitals taken. She was wearing one of my shirts. She loves to wear my clothes. We were very happy with the results. Still staying at 72 pounds and now we are 41 inches tall. Growth is super important with ROHHAD. One of the issues with ROHHAD is growth deficiency and Haven stayed at 39 1/2 inches tall for over a year.

We had LOTS of problems with getting the needle in to the port. It was horrible but her nurse was trying to make it as easy as possible on Haven. She put the first needle in but when she tried to draw the blood nothing was coming out. She put the flush in to it and it squirted out Haven's chest. Kris couldn't even watch and I had to keep looking away. Her nurse took the needle out and pushed on Haven's chest and all the saline flush came pouring out of the hole in her chest.

After feeling around a bit her nurse realized the port had floated and was turned sideways. OUCH. Haven had been saying it was bothering her for the past couple of days. Somehow the port flipped on to it's side even though it's sewn down inside. So Katie (her nurse) flipped the port back and had to hold it down really tight to get the needle in. Haven definitely felt it but never cried or made any noise.

Finally the port works and Haven begins to draw her blood. She always does her own blood and Katie just loves it. Haven helps out so much. She was definitely uncomfortable with the port today.

This is Haven's chemo set up. As you can see multiple nurses have to check off on the bottle to confirm the correct Chemotherapy is in there, the correct dose, and the correct name. I like to see all these little check marks and initials.

Kris and I met with Haven's Oncologist while Haven was getting hooked up and prepared. She fell asleep almost instantly.

When I left about an hour or so later she was barely awake but really out of it. She was just kinda sitting there staring off.

Around 2pm I received a text from Kris that they were getting unhooked and leaving the hospital. Then I received another text a while after - Haven wasn't doing well and she had pottied all over herself and her bed and was soaked. She was changed and it happens again. Then she realized her toes were hurting and her foot was swollen. She couldn't get her shoes on and was freezing. She hung out at the hospital for a bit longer and the nurses gave her a heated blanket to wrap up in. Kris finally left after a while with Haven in a wheelchair and a big blanket wrapped around her still unable to wear her shoes.

They made it home and Haven was sick and tired the rest of the night. She was asleep instantly after getting home and stayed asleep until 7:30 when she woke up to eat a very small amount and went back to bed. See her blue whale...that's Whaley! :)

Saturday she was much better but we kept her low key. She was upset because Stryder was here and she couldn't see him on Friday and she definitely had to see him on Saturday. She got to see him for a little bit and Sunday was much better for her.

She is still having quite a few issues with the port. Her toes are split pretty bad but she is feeling much better.

Saturday and Sunday Haven did not sleep at night. Sunday was Kris' shift and I believe he maybe got 2 hours total of sleep. She was awake about every 20 minutes. I hope tonight is a much better night...she has doctors at 8am tomorrow!