Day 4

Today is Wednesday - I believe. You start to forget....I'm so tired that I have put my car in reverse twice now when I thought I was in drive. Luckily I have not had anyone behind me. I have an insane migraine and I know Kris is exhausted because he has not slept since the start of chemo.

Today was probably our worst day.

Everything was fine this morning until......................the floor was mopped. I have slipped twice and our doctor slipped once. Today Haven slipped.

We were required to get a pee check and we had to wait for cleaning lady to stop so I could get Haven in to the bathroom. I had her masked up and sitting in her bed until I thought the floor was dry. We headed in to the bathroom - me, Haven, all her cables and an IV pole --- mixed with a wet floor.

Haven went down - I had cables wrapped in my arms while holding her hand and the IV pole in my other hand. Her head hit the bathroom wall. I quickly grabbed her and asked if she was ok. She just grabbed my neck and said "no I'm not". So I knew immediately something was not good.

Remember Haven can't really feel pain and she doesn't know how or just can't cry. She hasn't cried tears her entire life - 5 1/2 years not one cry.

But she does have this look on her face that I know when it's bad. They heard Haven through the door luckily because I wasn't close to a nurse call button. They came in and helped me get her to the bed and looked her over.

Next we were down in X-ray. They had to X-ray her head and chest. We had to check her chest to make sure the port line was not pulled out or messed up. You would not even know how horrible I felt. I could've just died right there. I was so upset at the cleaning lady, the wet floor, the cables, the fact that I couldn't catch her, and she was terrified that something was wrong with her new port.

X-rays came back great. Nothing wrong with head or chest or port. So I was extremely relieved. I definitely won't be trying to pick her up or do anything until I have tested every inch of the floor after a cleaning.

On Wednesday the hospital has BINGO for all of the patients in the Children's Center. It's pretty cute and this was Haven's first time ever playing. They do it on the TV because all the kids are in Oncology, Pediatric floor, Intermediate floor, or something which they stay in for quite a while. The kids get a BINGO card from Child Life and follow along on the TV. They announce medical terms in the columns and when you get BINGO you call a phone number to give them your info. Everyone can hear you on the TV and they announce your name and floor. Haven WON twice! She was so excited.

Around 6:30 I gave her a shower - which she almost slipped in. So going forward I will have a nurse or Kris in the bathroom with me when showering her. It's just too hard. The shower is small and there is no grippy on the floor. Her weight and me being short and soapy water are not a good mix. She is now sitting in a chair in the shower which helps a lot.

We did a couple of loops around the 8th floor to get some walking time. She likes to do that because the nurses all love on her.

She then got some Benadryl because the Central Line is starting to itch due to the healing. This knocked her out fast.

Then I got a call from Kris around 9pm that she was doing the same heavy snoring she was the other night except now her O2 was staying around 96 and sometimes dropping to 94. I will be sure to bring this up tomorrow to our Oncologists. It may have been the Benadryl and if so we won't take that anymore. Kris had the doctors come in and check her and they were not concerned but I like to go back to our "normal" doctors and just inform them.


So it's 11pm - I'm trying to do one load of laundry. I have a huge migraine and must be up early to head back to the hospital. Tomorrow Haven starts 3 new medications and all have lots of fun side effects........

Good night.....I'm going to pretend 99% of today didn't happen! Love to all and thank you to everyone.