Bella's Last 48 Hours

We were up and to the hospital Wednesday morning long before the sun showed it's face. Bella did fantastic during admitting and pre-op. She was excited to get into her gown and wear her pretty new (hospital) bracelet. Marc and I were allowed to walk by her as they wheeled her bed towards the operating room doors. Once at the doors we had to give our kisses and turn our little girl over into the hands of the medical team. Bella suddenly didn't think it was fun anymore. She cried and kept saying "No- I don't want to go. I want to come with you!" My heart broke and the tears started flowing. I had to walk away from her so she didn't see me cry. I couldn't even turn to watch her go through the doors. If I had my way I would have stood beside her and held her hand through the surgery just so I didn't have to leave her alone. I completely fell apart.

So much was weighing on me. So much was riding on this day. We have been on a crazy journey for the last three years. A journey of fear and not knowing. Of tests and doctor visits and medicines. Three years of searching for answers, asking questions, watching as Bella went through test after test, suffered through fever after fever. This surgery gave us hope. A 64% chance that Bella would no longer have another fever associated with PFAPA. It was a big day full of big emotions.

They let her take her kitty with her to make her more comfortable. The nurse told us they had to give the gas to kitty before Bella would let them give it to her. After surgery her ENT came to talk to us. The surgery was successful and went smoothly. He said that his bigger concern was her ear. Both of her ear tubes had fallen out but what had him worried was her left ear. There is a sizable hole in her ear drum. That is what was causing her partial hearing loss. He was able to patch the ear drum. He gave us ear drops to give to her daily to help keep the patch in place and heal the ear drum. We are praying that this works and that the ear drum does heal so that she can get her hearing back! I believe that everything happens for a reason. I believe that the timing of her surgery was not determined by us. Had we not done this surgery, I wonder if we would have caught the problem with her ear drum in time. She could have lost her hearing completely in that ear! God is good!!!

After we spoke to the surgeon the recovery room nurse came out and said they needed us now! We rushed back to find Bella in a state that scared me. The staff told us that they usually wait until the kids are fully awake from anesthesia before bringing the parents back but felt that we may be able to help. She was experiencing "emergence delirium" and was very combative. She was not awake but she wasn't fully "out" and she was scared. She was thrashing and kicking, screaming and crying. I tried to hold her but she was incredibly strong and it took Marc and I and the nurse to hold on to her to keep her from hurting herself. It was scary and heartbreaking. I have bruises on my chin and hip and legs from where she was kicking and bucking. I was crying and knew I needed to pull it together for Bella. I started singing her favorite songs, asking her where Kyle was. Marc was reassuring her that we were there. Anesthesia came to her bed with sedative and all at once............................she calmed down. No need for sedative. Yeah! We laid her on the bed and I rubbed her back until she went to sleep. We got a cold rag for her eyes. She looked miserable, sad, and fragile. So tiny and broken. Most people would think we were nuts for taking Bella's picture in this state- but this is part of her story. Someday we will tell Bella her story and we will show her these pictures and we will tell her how brave she was and how amazing her journey was.


When she woke up after a long nap she was well enough to go to her room. It was a happy room with a tv, a dvd player, pretty colors and clouds painted on the ceiling. She liked the clouds and I didn't get a picture of them.

Bear and Kitty were by her side the whole time. The staff was amazing. Whatever procedure or medicine they gave Bella- they gave to Bear and Kitty first. Bella was comfortable with them and they were so good to her and met her every need. She hated the IV and kept crying and asking us to "take it away."

She kept her jell-o down and they allowed her to have cottage cheese. She insisted on doing it all by herself! She is a very independent little girl. She did so well eating and drinking that they were able to take her off of fluids around 5:30p.m. As a reward she got to go to the playroom. She loved it there!

After about a half hour she told me she was tired and wanted to go back to her room.

It was a long night. Bella did well and slept well until her pain medication started to wear off. A nurse woke me up right before 4 a.m. and said he needed help. I walked over to Bella's bed and it was covered in blood and she was sound asleep! I thought she was bleeding from the surgery but no- she had ripped the IV out of her hand! She didn't even cry. We are assuming she did it in her sleep. The nurse decided not to put it back in as long as she took her meds well orally. She did!

Today Bella got to go to the playroom, make a craft and walk wherever she wanted. Daddy and Bella found a comfy window seat and watched all of the people and cars down below.

The ENT attending came in to check Bella and answer any questions we had and then discharged us. We were all excited to be going home! Bella said thank you and goodbye to all of the wonderful nurses and then we were on our way.

Five minutes after we left the parking garage of the hospital our little girl was sound asleep. Bella continues to amaze me with her strength and courage. She is truly one of the most amazing people I have ever known. I think of everything she has been through in her short little life and realize she is much stronger than I would have been. She is such a little trooper.

We had to stop and fill prescriptions for antibiotic, ear drops and Tylenol with Codeine for pain. When we got home Kyle, Cali, Grandma and Grandpa had made Welcome Home banners that were hanging up for Bella. Kyle's banner said "I Love Bella 4 Ever!" He missed his little sister so much and was so excited to see her back home.

We go back to her ENT specialist in a month for a check up. Her ENT told us that the pain would be worst from day 3 to day 10 at least, due to the healing process. We still may have a rough road but we know that this will only be temporary!!! For now Bella is enjoying her cottage cheese, jell-o and pudding! We are faithful that her ear drum will heal completely and her hearing will be restored and that the tonsillectomy and adnoidectomy will eliminate her cyclic fevers once and for all!!!!

THANK YOU ALL for your prayers, well wishes and concerns for Bella. It means so much to Marc and I that we had so many people pulling for Bella and lifting her name in prayer! We have been touched by all of your emails and comments! You bloggers are THE BEST!!!!

I may not post much in the next few days as most of my focus will be on Bella and her recovery but I will try and give small updates when I can. And hopefully I will be back to regular posting soon!!

Blessings,

Heather:)