Tuesday morning when Addy woke up we knew something wasn't right. Her stats were much lower and she was starting to need oxygen to stay above 92. After an hour or two of trying different things I told James we needed to take her to the emergency room to have an x-ray done of her chest to make sure everything was ok. Once we arrived at Arnold Palmer Children's hospital they took her right back (because we had called Dr. Schroth and she had called to give them a heads up). After an x-ray that showed pseudomonas (what she had last year) we knew we were in trouble. They admitted her to the PICU and then we started the process of getting her transferred back home. By the time we got her a room it was the evening and we immediately started chest pt every 2 hours to help get her lungs clear. We were hoping maybe just an over night stay would do the trick and she would get to fulfill her wish Wednesday afternoon. We soon realized that this wish was not going to happen and our Disney trip was cancelled. As Tuesday ended and Wednesday began we continued her respiratory treatments every 2 hours hoping to at least avoid intubation.
Wednesday
Wednesday afternoon Addy had a very special visited! A friend of mine had reached out to her friends on facebook to her friends to see see if anybody had any connections with Disney. Someone answered back and they were able to set up a visit from Cinderella. When I saw Cinderella for the first time in the PICU I became extremely overwhelmed (in a good way) and bascially lost it! At the time it was just my mom, Addy and I in the room (Tracy and Jeramie had gone to Universal Studios for the day and James was heading to the car shop to see about our van). I immediately told my mom to call James and he came back with plenty of time to hang out with Cinderella! Cinderella stayed for a few hours. At this point Addy was very tired and kept drifting off the sleep while Cinderella talked, read and sang to her. Cinderella felt it was very important for Princess Addy to get her beauty rest for the ball so she would go visit with another little girl and then come back. Total she spent about 3 hours at the PICU that day! Addy's respiratory therapist that day was a true blessing. As soon as Cinderella arrived she grabbed my camera and took over 100 pictures! The last time Cinderella came in to visit Princess Addy was wide awake and pleasantly shocked to see Cinderella was still there. They spent about 30 minutes talking back and forth about Lucifer, Jack Jack, Gus, Prince Charming and the ball! Seeing my princess meet Cinderella is something I will NEVER forget and I'm so thankful for my friend Sandy, Disney and Cinderella! As the day went on Addy started to get really tired and we knew her BiPap machine wasn't going to be enough. We met with the Dr in Orlando and knew to get Addy safely to Roanoke or Wisconsin our best bet was going to be to intubate her (especially since she was tiring out). James and I made the decision Wednesday night if we had to intubate we would transfer Addy to Dr. Schroth in WI and not home.
Thursday
Thursday morning things had not gotten any better for Addy so we decided to go ahead and have her intubated which meant we could fly her to Wisconsin safely to see her SMA doctor, Dr. Schroth. After they intubated Addy the Dr went ahead and put in a Central Line and Arterial line...now she was ready to leave! A few hours after intubation we soon realized James and I were going to have to put our boxing gloves on and prepare to fight for our sweet girl. After intubation the hospital refused to continue all of Addy's respiratory treatments (even after talking to Dr. Schorth). They felt it was too dangerous to use the "cough assist" machine on a patient who was intubated. James and I both knew and expressed how dangerous it was if they DIDN'T use it but it didn't matter, they would not listen. James even asked if he could cough Addy instead of them and they told him if he touched the cough assist (keep in mind it's our machine) they would have him taken out in hand cuffs. They actually moved the cough assist away from Addy and by the door so they would know if we had touched it. After talking to Dr. Schroth about it she said there was nothing we could do and hopefully it wouldn't get too bad in 24 hours. Thursday Addy had two visitors from the Orlando area. They were friends of a guy named Sam who went to school with James and wanted to bring Addy some goodies from Disney. They work at Disney and were able to get autographs from all the Princess in a princess story book and even Mickey and his friends! Thursday evening Tracy, my mom, Jeramie and I went back to Give kids the world to pack up our villa and get everything ready for our trip to Wisconsin (so we thought.......)
Friday morning we woke up ready to get out of Oralndo and head to WI to see Dr. Schroth! During rounds we soon found out that our trip was about to change because Anthem had denied Addy access into WI hospitals. I still do not understand how insurance companies can deny someone access to see THEIR doctor! In my opinion that should be against the law!!! Anyway we immediately started to process to get her home. Back in Roanoke Christina and Lindsay had posted on facebook that Friday was going to be "paint the town pink" and every one should wear pink, post their picture to facebook so Addy could see. The turnout was HUGE people from all over the country were wearing pink for Addy and because of it she even got a special article in the Vinton Messenger (www.ourvalley.org) The transport team was suppose to be to the hospital by 6 so we waited around. Around noon we found out the plane was being delayed and the transport team wouldn't be to the hospital until 7. My mom, Tracy and Jeramie left Orlando around 6 and a little later we found out the plane had been delayed AGAIN and they wouldn't get to us until after 8. We were SOOOO ready to get out of that place that another delay may have turned us crazy!! By 9:00pm Addy was loaded on the stretcher and heading out the doors to the ambulance. As soon as her little body left the hospital her heart rate and respiratory rate lowered and we knew she was so happy to be out of that place! Because Addy was intubated we had to get a bigger jet which meant I got to fly back with James and Addy...yay! James rode in the back on the ambulance with the transport team (a nurse and respiratory therapist, RT) and one of the EMT's while I rode in the front with the driver. The ride was about 15 minutes and the entire time I was a nervous wreck! I knew she was in great hands but I was so nervous about the flight since she was intubated and the risk of the tube shifting, falling out, etc, etc. They should have given me some of Addy's meds to help relax momma (haha)! Once we arrived to the airport we met the two pilots who were fantastic! One said he had flown to Roanoke a ton because his in laws lived there (a big relief for me as I had heard Roanoke was a very difficult airport to land in) and the other said he went to Liberty...small world! The nurse and RT were fantastic and helped ease my fears. We were in the air by 10:00 and during the entire flight Addy did perfect. We spent a lot of time talking to the transport team about Addy, SMA and all the different places they have been to pick up patients. The two hour flight went fast and before we knew it we were landing in Roanoke at 12am. My dad and Smokey met us at the airport to pick me up and take me to the hospital (I couldn't ride in the ambulance to RMH...only one parent). Christina was waiting in the waiting room for us too so I ran in gave her a big hug and then headed back to the PICU to let everyone know Addy was on the way. It was a pretty dead night so they were all sitting around waiting for us. As soon as Addy arrived they got her settled and started chest pt on her. We were so happy to see Mike (Addy's favorite night RT) working and he got right to work coughing her for a good 1.5-2 minutes. I ended up going back to Christina and Dock's for the night to get a little sleep.
ambulance ride
airplane ride...a little blurry
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