Our Past 24 Hours

This has been the WORST 24 hours we've endured so far and I'm sure we will have many more of these days.

I spent my first night ever in the hospital with Haven. Kris always stays and he had been at the hospital for the past 12 days straight so I had to give him a break and let him get some sleep.

I'll start the night with Haven never slept. She maybe got a total of 1 hour of sleep last night. Haven does not handle change very well. She likes an extremely structured scheduled and the switch of me staying and dad going home just threw her off. She talked about it for over 5 hours that she didn't know I was staying and dad was leaving. Even though he told her 4 times exactly what was going to happen.

At 6am on one of the nurses visits she told me Haven would need a blood transfusion today. So immediately I was wide awake and sent Kris a text. I wasn't sure I could handle a transfusion. I didn't want it to be on my day. She needed the transfusion because her resting heart rate all night was near 170 and her counts are now at 0.

Haven had the worst day of diarhea. Every single time she ate something she spent the next 20 minutes in the bathroom. Every single time. By 10am her stomach was hurting so bad she couldn't get out of bed.

Start of transfusion

At 11am her transfusion was brought up. Completely freaked Haven out to have a big
bag of blood hanging over her head with a tube going in to her chest. She wouldn't hold the cables and she wouldn't even look at it. The transfusion was to last for 4 hours.

They had to stop the transfusion at 2 hours because Haven was starting to get a fever and had some severe chills. They immediately stopped it and took her labs to check what was going on.


Haven was also very dehydrated today from all the diarhea the past few days. This caused a major depression by 1pm in Haven. She is usually allowed to be uncabled for 4 hours. Today she was not allowed to be disconnected. We had to do lots of pee testing and drinking lots of fluids. I believe she had about 64 oz of fluid before lunch - not including what was going in to her port.

The transfusion (what she got of it) did help to lower her heart rate in to the 150's through the afternoon.

By 6pm Haven was allowed to get the cables off for 30 minutes to get a shower and some walking time in. This began the most emotional part of my day for me.

We were getting undressed and she asks me if she can have a hug. Of course, she can have a hug anytime she wants. While giving me a hug she says "Mom, I feel very lonely". My heart immediately sunk. I've been with her all day and tried to keep her happy but she kept saying she just felt lonely. She can't see anyone and she has to stay at the hospital and she couldn't take the cables off, the child life girl didn't come see her today, no one came to play with her. This was hard - I can't even express how horrible this was to hear.

We got our shower and Haven came up with the idea to wear her grippy socks in the shower so she wouldn't slip again. These worked great.

After the shower we prepared to take our walk. It takes about 5 minutes to get her covered and masked to take a walk. She was walking very slow and pretty shaky. She told me she was feeling a little dizzy but still wanted to walk. We made it about 20 feet and she looked at me and said she had to get to her room - she couldn't walk anymore.

We got to the room and she just couldn't move anymore. I carried her (all 73 pounds) to the couch. She then told me her "feet wrists" were hurting. So cute. I couldn't figure out what a feet wrist was....then I realized it was her ankles. The leg bones, ankles and her neck were destroying her. Then the chills came again. She was absolutely freezing inside but about 200 degrees on the outside.

I got her in the bed and covered her with 3 big blankets and she was still shivering. After I got her calmed down I called the nurse in. She looked Haven over and called the doctor in. The doctor told me that the G-CSF would cause bone pain because it's forcing the bone marrow to start creating an immune system again and it hurts. The doctor ordered her Dilauded for her pain and tylenol for the headache.

When I left around 9pm Haven was able to sit in the bed and was trying to color some pictures the nurses printed for her to put on her wall. The Dilauded was on the way up and her night nurse had a complete run down of the entire day and reviewed it with us.

Sunset before I left her room

I called Haven around 10pm and she was getting a foot massage from dad and watching TV. Her next dose of medication is at midnight so I hope the medication kicks in and gives her a good night of sleep.

I love my baby and I can't stand seeing her go through this. Kisses and hugs Miss Haven.