Post Surgery - Day 1

Last night was really rough. They had to come in every hour to check on Maddy and make sure all her neuro functions were working well (follow a light, move her toes, squeeze their hand, answer question, etc.). She also got her catheter removed but couldn't really move to the bathroom with all the IVs on her so we had to use a bed pan. Needless to say, we didn't get much sleep. She was also very anxious every time the nurses came in to do anything so that added an extra challenge. They were flushing out one of her lines and she freaked out and said it hurt so any other movements towards her arms was met with hitting. She also didn't enjoy taking some meds by mouth. In her defense, she has had some bad experiences in the hospital (see Maddy Update and Maddy - Update 2 for her bad China hospital experiences) and she has been taking seizure meds since she was two. 

She did let me crash a bit once morning arrived while she watched a movie on the ipad. Nathan and the kids came in the a.m. and I was able to go shower and get some breakfast. 

(Since CC is so large, they provide shuttles back and forth so the kids have loved riding in the shuttle from the RMH to the hospital without car seats.)

At Cleveland Clinic they don't provide meals for the parents but the parents are also expected to stay with their child 24-7 while at the hospital so it's hard to actually get food. I didn't get dinner last night so I was very hungry by the time Nathan arrived. Maddy has gotten very attached to mommy so whenever I try to leave it does cause some extra tears. It's hard to balance taking care of myself - I need a shower and a nap and to spend time with her siblings - but I also want to care for her. Grandma and Grandpa came later and sat with her for a bit. They told us they would take out her IV that was running at her wrist which was causing a lot of discomfort. She panicked when they started getting ready to do it because to her the area just hurt and she feared any further messing with it would make it worse. We were able to take it out and she is enjoying being able to move around a bit. Plus, Grandpa, the baby whisperer, gave her a nice back rub to calm her down. My folks left to give Nathan's dad a chance to come in and I went to get lunch with my folks and the kids. We got some pizza in the cafeteria and then the kids returned back to the RMH for nap. Emma loves watching a movie with Grandpa while August naps! When I got back, Maddy and I took a nap in the bed which we both needed. The surgeon came in a little later and said that she was doing very well. They were encouraged that she was eating solid food and wanting to get up and move around so much. She has been cleared to move from the PICU but because all the beds are full, we are staying put for a bit longer. The Child Life Specialist is trying to get it worked out so that even if Maddy is still in PICU, if she's technically able to be moved out, maybe she can get cleared to walk around and visit the play room. She would love that. She hates being confined to a bed! The neurosurgeon is hoping to send us home on Saturday. Maddy complained of her head hurting around 4 so I snuck out and came back to RMH with Nathan's dad so we could go out for dinner for Emma's 5th birthday.

We always do something big for the 5th birthday and we had a party planned for Emma for this Saturday with her classmates but we had to push that back because of the surgery. We couldn't really make up for it but we decided to do something so since it was Nathan's turn to stay the night tonight, we took Emma to Chuck E Cheese here with the grandparents. We had pizza again and played and were able to celebrate the birth of our sweet Emma. She opened a few presents and hasn't complained one bit about spending her birthday in and out of the hospital while we care for her sister. She's been a champ!

We got home and the kids took baths while I organized our room a bit. Tomorrow they will take out Maddy's drain line that's pulling the blood from her incision site (That's the red line you see in most the pictures) and they will remove her head dressing. Sometimes they have to put a stitch in to kid's head when they do this but they don't need to with her. I'm heading to bed with the kids and we will start recovery day 2 tomorrow. We are really feeling those prayers coming our way. Thanks so much. Here's some more to pray for tomorrow:

1. Pray a room opens on another floor soon. Right now we are only able to go back 3 at a time but if she gets a private room, we can have as many back as we want. They also have a bed for parents to sleep in when they stay rather than a couch.

2. Pray for the removal of the drainage bag. The Child Life Specialist said that sometimes those are harder to take out because the kids can't see what's being done but they know someone is messing with her head. They said they would like to give her some "happy juice" again to help when they do that process since she's so anxious. If we move to another floor before they remove it, it can take longer to get those meds. Pray for this whole process to go smoothly. No anxiety for Maddy and that she will be able to get the "happy juice" early enough to be helpful.

3. Sleep for Nathan as he has a turn at the hospital this evening. It's hard when you are tired to be gracious to a needy child. We need the grace! It's hare to say soothing and kind words when your child is fighting you to avoid getting something done that needs to be done. It breaks my heart!

4. Continued healing and peace for Maddy. She ebbs and flows with the emotions and gets really panicky when she's tired. Sometimes she clings to me like I am her life line. I hate to see such fear in her. Pray for God's peace that passes understanding. Nathan just texted and said she's doing well tonight so pray that as she starts feeling better than the will see that we are all on the same team. With Maddy's anxiety she often feels like people are out to get her. At school or home she is always on the defensive. Pray that God will give her peace to not fear those trying to help her and that she will have the strength to trust them.

5. Continue to pray for opportunities to share Maddy's journey and our grace story with others.