Hannah was feeling a little better and wanted to go and see the hospital.
We went to see the “Stars”, the “Train Room” and a few other places.
Hannah got tired very quickly and was ready to go back to her room to rest.
We also got word that the Dr. wanted to keep up 1 more day. Bummer!
Hannah got her 2nd wind about midnight of the 19th and is not enjoying jello and gold fish.
Mom is tired, and all medicine has been given, Hannah’s fever is still at 101. The itching is increasing and we are ready for are next dose. Enjoying another midnight snack of yogurt she didn’t eat from supper.
It is 4:30 am Hannah hasn’t slept much going to try some more benedryl since it is not time for the other itch medicine, she is having a snack and juice and watching cartoons. Thank goodness for Nick Jr. and Disney.
At 8 am Hannah is tired and cranky and mom is tired, it was a long and rough night lots of catnaps. Hannah had her first tantrum mom tried not to laugh but it was so cute, we had the stomping feet and everything.
Her iv vein failed after the strong dose of steroid so the nurses will need to put another in before Hannah’s next dose of steroid today at 4 pm. Get to visit Rosie the Hippo again.
Hannah ate fairly good for breakfast, french toast sticks and bacon.
Dad’s brother and family came to visit and offered to take “R” home with them for the night. Little sister was getting bored and had more energy than Hannah could handle.
Hannah has slept off and on all day, we haven’t been running a fever since morning. She received her 2nd dose of Steroid at 4 pm and slept through the whole process.
She woke up ready to go for the day around 6:30 pm and very hungry. That’s the steroid in her, it makes you very hungry and gives you lots of energy.
It is 11:30 pm and Hannah is not able to sleep, another long night ahead of us.
Each day began about the same.
They delivered a large dose of steroid by infusion every afternoon between 3 and 4pm. We always wondered why this couldn’t be done in the mornings. It always seemed to wake Hannah up just in time for bed … 🙂
Mom stayed in the room only to leave to take a shower in the Ronald McDonald hospitality room at the hospital or go to the cafeteria to grab a bite to eat.
Dad wandered the hospital from time-to-time, but stayed close by.
This is Hannah’s Dad.
I wanted to tell you a little bit about my experience at the Ronald McDonald House Charities (RMHC).
I heard about the RMHC many times before, online, at the restaurant, at the balloon festival in Topeka, but really didn’t know what it was all about.
The RMHC provides a place to stay while your child is in the hospital. It doesn’t really sound like much, but when you have a child in the hospital, it really makes you appreciate the ‘normalcy’ of coming to a clean, quiet place to sleep and try and take your mind off of your current situation.
I heard about the RMH from the “Welcome to Children’s Mercy Hospital” video we watched right after we got settled in Hannah’s hospital room.
I called them to see if by chance, they have a room available for me and Hannah’s sister to stay overnight. They did!
“R” and I checked into the house and found a full lasagna spread in the kitchen with people serving up plates upon plates of wonder food. After what we had gone through, we were very glad to have a home cooked meal.
The rooms weren’t anything special, but reminded me of my old college dorm room at KU. It was actually a little nostalgic.
I know this doesn’t really reflect my true feelings, but the people running the RMHC really have a soft spot for hurting families. Me and my family are very grateful.
Me and “R” stayed the night and woke up on Saturday morning and went back to the hospital.
I ended up staying 2 more nights and checked out when Hannah checked out of the hospital.
We started our day like “normal”, Hannah was still running a mild fever and the rash had not changed.
We sent her sister to school, Dad went to a meeting with a client and Mom stayed home to monitor Hannah.
Dr. Kessler called after lunch to check on Hannah again. Mom filled her in on the situation and Dr. Kessler decided Hannah was not responding quickly enough to the steroid and asked us to come back to Children’s Mercy Hospital and be admitted for the weekend.
The doctor was concerned that Hannah could be at risk of having macrophasia which means that the high antibody count plus high fever can damage the liver.
Dr. Kessler ordered 3 large doses of steroid to get her body back on track.
Mom called Dad about 20 times, texted him about 20 times asking him to call home immediately. This time, Dad had left his phone in the car to charge and didn’t get the messages until after the meeting.
Mom informed Dad that we need to go to Children’s Mercy Hospital immediately.
Dad went by the Elementary School and picked up “R”, and by the time he got home, Mom had a couple of overnight bags packed and we hit the highway for the trip to the hospital.
We all arrived around 4 pm at Children’s Mercy Hospital and weren’t sure what to expect.
We were given a room on the 5th floor and waited for the Doctor to come visit, she happen to be on call all weekend so it worked out really good.
While we waited, we were shown the “Welcome to Children’s Mercy Hospital” video on the TV. We learned all about the wonderful services at Children’s Mercy Hospital and also learned about the Ronald McDonald House. We were able to stay at the Ronald McDonald House if we drove over 50 miles to be there with our child.
Luckily, we were able to get a room for Dad and “R” to stay in, that night. Click here to read Dad’s story about the RMHC.
Hannah was taken to Rosie the Hippo’s room to have her IV put in and more blood work done. (Hannah named the hippo Rosie). During this time Pink Bear is always by Hannah’s side. (she has had pink bear since she was a few weeks old so she is very important.)
Dad and “R” headed to their room at Ronald McDonald House for the night and Hannah and mom tried to settle into their room.
Hannah had a very rough night of itching, different bed and just not comfortable. At 9:30 pm they began her 1st round of steroids it went good, she slept through the whole process.