Friday, October 26, 2012

Disney Trip- Flying home

Our last morning was a little rushed. We had to be on the bus to the airport by 9:30am and we wanted to let Addie sleep in as long as we could after her seizure ordeal, so we were packing up in a rush. We had packed up as much as we could the night before but there's inevitably little things here and there you can't pack til the last minute. We made our luggage call and sent out luggage away with the sky caps they have on site at the hotel, which was awesome. Cus we really didn't want to schlep all our suitcases on the bus and through the airport.


We stopped off for a few last pictures - the boys were especially excited to check out the Cars building. One thing we didn't have time to do this trip was explore the other areas of the resort. So we took a quick look around the Cars section on our way to the bus.



Addie in her University of Texas inspired dress - made by Aunt Missy - on the way to the bus. 



Grayson got a new hat with his souvenir money from Memaw. He looks so old in this picture!



Jack and Jackie waiting for the bus.



A photo tradition for us is to always take a picture in front of this fountain in the airport right before we go through security to leave. 



Addie squeaked around the airport in her Wee Squeaks. She enjoyed looking out the big windows.



On our layover in Houston, we ate at Pappas Burgers and Jack ordered a hot dog. It was as big as he is!

The ride home was bittersweet. Our vacation had been both magical and terrifying. I admit to holding my breath the whole way home. Flying on an airplane with a child that just had her first ever seizure was scary. Thank God we got home safely and Addie didn't have a seizure the whole day. 

We arrived home and went our separate ways. It was good to be home. 



Monday, October 22, 2012

Disney Trip - DHS Day

After our wonderful night spending together as a family, eating at 'Ohana and watching football back at the room, we decided we would try to go into the park for just part of the day. It was still hot, but we had a game plan. We let Addie sleep in as long as she could and then we would head straight from the room to the bus to our lunch reservation, walking along the shops to keep Addie in the A/C.  After lunch, we rode a few rides, taking our time so we could walk inside more than outside. We bought Addie a mister fan and made sure she was drinking all the time. We had a plan and we were all watching her like a hawk!

One last park bus line


The boys got tired of me taking pictures but I felt like I had to make up for lost time since it was our last day


Waiting for our name to be called at 50s Prime Time Cafe 


A photo op with the Incredibles


Posing in front of the Roger Rabbit Car


Addie and I sitting on the Roger Rabbit car- I have several pictures of me sitting on this car over the years.


We rode a few rides but saved the best for last... Tower of Terror


This was Jack's first time on this ride.... he was shaking the entire time and then when he got off said it was the best ride ever!


One last shot of our family of five as we were leaving the park for the last time 


On the bus on the way back to the room. The thing we noticed that was affected the most by Addie's seizure was her eye alignment. You can really see it in this picture.


After we got back to the room we decided to get a big pizza from the food court and go back to the room and watch Monday night football! Addie escaped out the hotel room door and was walking up and down the hallway.


We watched football, ate pizza and started the packing up process. We had a 9am appt with bell services to catch our bus back to the airport. We turned in early and let Addie sleep as much as she could because she had to be up in time to make the plane!

Sunday, October 14, 2012

Disney Trip - 'Ohana means Family

We had a reservation on Friday night for 'Ohana, a very popular restaurant at the Polynesian Resort on Disney property. I had booked it 6 months in advance as they fill up quickly, especially over weekends. We obviously didn't make our Friday reservation as we were at the hospital with Addie. I called Disney dining reservations and explained what had happened. They got us back in Sunday evening at 5pm. Early but we were in! YAY Disney customer service. We were still getting phone calls daily from the housekeeping manager to check on how Addie was doing. It was very sweet and definitely above and beyond the call of duty. 

Sunday morning came and  we slept in  as late as Addie did. She was still recovering from her seizure and I'm guessing from the meds they gave her to stop the seizure so she was sleeping more than her normal, which in my opinion, was a good thing. We decided not to go into a park that day to let Addie take it as easy as possible. So Adam graciously agreed to stay at the room with the kids while Mom, Melissa and I went shopping. This allowed Addie to nap on and off as she needed and the boys some down time on the iPads and Adam was able to watch Sunday football. The boys were more than happy to hang out in our cool Nemo themed room and play on MeMaw's or Aunt Missy's iPad (in addition to the one we brought). And I was in need of some retail therapy! 

Mom, Melissa and I headed via bus to Downtown Disney and spent about 3 hours shopping. It was wonderful !! Of course, Adam and I were texting back and forth continuously so I could ease my mind about how Addison was doing. Thankfully, she slept the whole 3 hrs we were gone.  

Cute little dressing room in one of the shops at Downtown Disney.



After we got back from Downtown Disney, we got dressed for dinner. We had to leave fairly early as we had to take a bus to Magic Kingdom and then catch the monorail over to Polynesian Resort. 


Addie saying hi as we waited for the bus. 
Mom and the boys looking down at the waterfall in the lobby of the Poly.

Melissa and Jack at dinner

Mom and my two boys

Mom trying Melissa's lapu lapu. She wasn't a fan.

The boys doing the coconut races at 'Ohana

Addie playing with one of the (cooled off) hot towels they bring out to de-sticky your fingers

"cheese!"

Clapping about something

My family of five! 

The best pic of the 3 of my kids 

Addie wanted down!

My boys!

Mom and Addie

One last pic of the beautiful Polynesian... my favorite Disney resort

After dinner we headed back to our hotel, via bus to Disney Hollywood Studios. Thankfully the same bus that came from Poly switched to an Art of Animation resort and we just stayed on the same bus! Mom took the boys to play in the arcade, I gave Addie a bath and we turned in fairly early, watching Sunday night football while Addie slept between us. It was a much needed evening ! I'm so glad we were able to get back into 'Ohana! We all needed a little 'family'.

Thursday, October 11, 2012

DisneyTrip - Hospital (The day we didn't plan.)

I wrote the following paragraph of  'notes' while we were still in Florida. This is obviously not my normal blogging style but all things considered, I think it best to post what I was actually thinking/feeling immediately after the events.

Got up around 9am. Paying bills on the computer while sitting in bed, checked on Addie in her pack n play (right next to our bed), covered her up and she had her paci in her mouth, sleeping soundly. A few minutes later we heard her snubbing and thought she had a bit of a stuffy nose from the cold air, took at least 5mins before I decided I would take a bath. Walked by Addie’s pack and play and she was convulsing. I told Adam she was having a seizure and to call 911. I picked her up and put her on the bed, took off her drool and sweat soaked night gown and laid her on her side. Swiped my finger in her mouth to make sure her airway was clear. Adam handed me the phone to talk to the 911 operator so I could tell him what I was seeing. Thankfully I had talked to our pedi before hand about what to do if/when she ever had a seizure, plus had read countless tales of other hydro kids seizure experiences, so I knew what to describe. She still had color so we didn't have to do cpr, both her arms and legs were twitching but worse on the right side. Her eyes were open but she couldn’t focus. I handed the phone back to Adam to stay on the line with 911 while I got dressed. I knew I would be going with her to the hospital. We didn't even discuss who would go. Threw on the clothes I had laid out the night before, grabbed her medical binder and my cell and cell charger and was ready to go w the ambulance.  We tried to talk to her in case she could hear us, and prayed over her. I went to the door and waited for the emts. A security guy and a housekeeping manager were walking up the hall to see if there was anything they could do. I told them she was seizing and the security guy came in and saw her seizing on the bed still. They said the emts were almost there… Addie stopped convulsing on her own before the emts got there but was still unresponsive… postictal is the term I think. She wouldn’t turn to her name, her right side of her body was completely limp – she couldn't move it and she was still drooling. When the emts got there, they looked her over and said load her up. They didn’t have to offer any support in the room which was good, and since she had stopped seizing they didn’t have to give her meds. I kissed Adam on the cheek, told the boys as I walked past them still in bed in the murphy bed to pray for their sister and I chased the stretcher down the hallway. We went by the pool, through the Landscapes of Flavor food court. People were scattering everywhere to get out of our way as it was towards the end of breakfast and beginning of lunch. A man I have never seen before stopped and made a sign of the cross, I thanked him as I ran after the stretcher through the gift shop and out the doors to the ambulance waiting. We loaded up, I climbed in the back and we were off, sirens blazing. They were discussing what hospital to take her to and I requested Children's if she was stable enough to go. They got the pulse ox on her and it was 89-90 and rising. She was still unresponsive but the emt felt she was stable enough to go to Children's 25 miles away. They checked her blood sugar and it was high ish but not astronomically high (145). Her vitals were good. We arrived at the er and she was transferred to the regular bed and they gave her .5 ml of Ativan…. and started seizing 'again'. I don’t know that she ever actually stopped per se but the second seizure was a different type- it went back to or became a partial instead of a generalized seizure. She was lip smacking and bubbles were coming out of her mouth and her right side was hypertonic so they gave her another .5 ml of Ativan. She passed out but was running a fairly high heart rate. They watched her heart rate fairly closely. It was in the 180s. A quick post to some of my hydro friends and I found out that that can be a normal post seizure occurrence .. thankfully they were right and Addie's heart rate started coming back down again. She slept/was knocked out for 4 hrs at least. 




Writing this now - This picture was taken right after the second dose of Ativan. They think she had about two hours of seizure activity all together. 

They wheeled us away for a CT and for a shunt series X-ray. The ER attending doc obviously hadn't seen many scans like Addie's. I was standing in the little booth by the cat scan machine when her scan came up. Before the ER doc could stop himself, he blurted out "Damn. She doesn't have a lot of brain in there." I laughed and said actually that looks great compared to when she was born. I knew from looking at her CT that her scans were normal so we were pretty sure this wasn't shunt related. Her x-ray series came back normal as well. Our working theory was dehydration combined with heat and humidity and topped off with lack of sleep. She had not been napping like she does at home and definitely not getting 12 hrs of sleep at night. For 3 nights in a row.  We had pushed too hard... and she had been such a trooper. But it was just too much for her little body. 


After they wheeled us back into the ER room, they just left us there. They had her hooked up to monitors, obviously to monitor her from afar, and about 4 med students came around to hear her story. Adam and I had been texting back and forth all day. I had been on Facebook chatting with friends and in support groups. I knew I would need that cell charger! To everyone that helped me pass the time that day, answered questions or offered up prayers for Addison, thank you all so much!! 

After a few hours,  she started trying to roll over to her belly to sleep, and that's when I cried. It was the first "Addie" like behavior I had seen since her I found her seizing. 



Starting to come around by about 4pm. The neurosurgeon on call had been a resident of Dr. George's, ironically enough. He suggested doing a shunt tap to check for infection or pressure and I politely declined. I did not want to introduce any foreign bacteria to her body for a shunt that was over a year old. He agreed but gave her two hours to start coming around. Thankfully, she did about an hour or so later. We were told at this point that she would be admitted for observation. I called Adam and asked him to join me. We had decided that he should stay back and help with the boys until we knew more and now that we knew we were being admitted, I knew I wanted him there. Disney paid for his cab fare for him to join me. He arrived around 5pm. The boys stayed back at the hotel with mom and Melissa (so thankful they were there with us) and had a great night of swimming and arcade game playing and ordering off the adult menu at the food court. There were two packages of toys given to them by Disney workers, one from the gift shop and one from the arcade prize store. Every Disney employee they ran into that night asked how the baby was. The same housekeeping manager that had come by while she was seizing, called the room twice to check on her. 



We were finally checked into a room around 7pm. It was the tiniest room I've ever seen in any hospital. Adam and I had one twin size fold down cot to sleep on. HA! And Addie was drugged but awake. She was a flirt! Babbling to her transport tech and making googly eyes. She took a body of pedialyte and passed out shortly after we got her in her crib. She was exhausted! She slept straight through the night, with one exception at 2am. Adam and I watched tv, caught everyone up on the events of the day and turned in relatively early. We slept head to feet opposite each other. We made it work! 


The lobby of the hospital is even Disney themed!



Bright and early the next morning, the EEG tech came around and did Addie's EEG. Because she had never had one before we didn't know if the results were her normal or because of the seizure. The good news was that she was not currently showing any seizure activity. The not so good news (although I was prepared for it) was that her left side was abnormal and showed slow waves. The neurologist finally made rounds around noon and we were free to go. He agreed that it was most likely a perfect storm of circumstances but that we needed to follow up with our neurologist at home. Thankfully, I had already set us up with one back in August - just in case. We were sent home with a Diastat (a seizure rescue med used for any seizure that lasts for more than 3-5 mins. Disclaimer(again): I'm not a doctor!!! Just a hydro mom sharing her experiences!) prescription that we had to fill downstairs at the hospital pharmacy (which took FOREVER) and then we loaded up in a cab complete with car seat and made the long, surreal drive back to the happiest place on Earth.



A traditional shot that many Walt Disney lovers take is of the sign as you first drive onto property. It's the land mark that announces you are THERE! Never has that sign been more welcome to my eyes! I was so relieved to be going back to our hotel with our daughter, who was seemingly no worse for the wear. I said a prayer of thanksgiving as I held her hand and snapped this picture through the windshield. 

Addie at dinner that night, still a little punch drunk, but happy as can be. Thank you Lord! 



Monday, October 8, 2012

Disney Trip - Epcot Day

We had a great second day in Disney! We spent the whole day at Epcot. We intended to go back to the hotel for an afternoon break but when Addie fell asleep in her stroller we let her sleep as long as she would, about an hour and half. Mom did go back to the room for nap so she missed the afternoon downpour we got stuck in.   Addie was such a trooper! She stayed in her stroller all day and would start moving back and forth to get the stroller to move again. Our evening meal at Via Napoli was amazing. We walked out of an empty Epcot after closing on cloud nine!