I have honestly been dreading this post a little bit because I have not been ready to relive all of these events and go through them in my head, but I feel that I owe to all of you to let you witness how powerful all of your prayers were for us!
On December 10th, Riley Kate had a wonderful Friday at school and at home, and she was her normal happy, playful self. That night she was spending the night with my parents, and she was so excited about it! My mom called about 10pm and said Riley Kate felt hot like she had fever, but she was alseep, so they would just watch her. We told them to take her fleece pj bottoms off b/c she gets so hot, especially when she sleeps. She called back about 12am and said that Riley Kate had vommitted, so I immediately rushed out there. When I got there, she was obviously sick but acting normal and responsive. She was talking and saying she didn't feel good, but she wasn't doing anything abnormal. It had been over 2 years since she had her last seizure, and we really thought she had outgrown the seizures. Well, we had hoped she had!
All of the sudden her whole look just changed, and she was staring off to the right side into space and would not look at me or respond when I talked to her. I got worried she was about to seize, so I sent my mother to get the seizure meds at my house. I stripped Riley Kate down and proceeded to try and cool her down with lukewarm rags but was unsuccessful. Then, it began; she started to seize violently. I grabbed her and ran to the car yelling for my dad to drive us to the hospital. She was jerking so badly that it was extremely hard for me to even hold her--this was the worst seizure by far that I had ever seen! She seized the whole way to the ER and continued to seize for about a total of 10-12 minutes, which seemed like forever!!
Once the seizure stopped, she was in what is called a postictal state, where she was totally unresponsive & having obvious difficulty breathing. Dr Wells came in, examined her, reviewed the labs (which included arterial blood gases), and became extremely concerned. She ordered a stat head CT, more labs, and the order I didn't want to hear--for her to be put on the ventilator. The carbon dioxide in her blood was 181 and the normal range is 35-45, so she was definitely having trouble getting air in and out of her lungs. The next thing I knew Dr Wells was telling me she would need to be air lifted to Lebonheur right away. My whole body went a little numb as I tried to wrap my mind around exactly what was going on. Everything just seemed to be happening so fast. I remember starting to cry b/c I knew if she was flown there, I wouldn't be able to ride with her and be right there with her holding her little hand. Those of you who know me, know I NEVER leave my kids when they're sick. I always tell doctors or nurses, "if you can't do the procedure, etc. without me in the room, then it won't be done," and I'm very stubborn about that!! Dr Wells knows me quite well, and I'm sure she knew what I was thinking! She grabbed me and promised me that Riley Kate was going to be fine, everything was going to be fine! I love her and trust her, and I knew she would do everything in her power to keep that promise!
The Pediflight team from LeBonheur made it almost halfway to Clarksdale and had to turn back due to bad weather and strong winds, so we would have to wait for them to come by ambulance. In the meantime, the CRNA from the anesthesia department intubated Riley Kate and hooked her up to the ventilator. Honestly, that was hard to watch. I just kept asking for everyone to be sure she stayed sedated, so she wouldn't wake up with a tube down her throat!! That would be horrifying, even for an adult! Her CT was done, and our dear friend that is a radiologist came to take a look at it at 3am. He was up front and honest with us and told me straight up that it was abnormal. He then told us there were several calcifications that were in a pattern that made him lean towards a diagnosis of Tuberous Sclerosis, which I had never heard of, but he said an MRI with and without contrast would be needed for further investigation of these tumor-like areas in her brain. As we wheeled back to the ER, the Pediflight team arrived in the ambulance to pick up Riley Kate.
I know I probably aggrevated them so much because I made each one promise me they would keep her sedated and not let her wake up with that tube in. They all were so sweet and reassured me they would not let that happen, and they even called and got an order to give extra sedatives to ensure she would stay sedated and have no memory of any of this.
The next thing I knew Jason, Brantley, and I were following an ambulance to LeBonheur. The weather was horrible, and the rain and wind made it difficult to drive, but Jason stayed right with the ambulance! For some reason, it made us feel better to at least be able to see the ambulance since we couldn't be on it with Riley Kate. We were suprisingly calm, and I know it was the prayers all of you were sending our way.
Grayton was alseep at my aunt's house, so he stayed there. My dad had left a few min before we did heading to LeBonheur. He is so close to all of my children but has a special connection with Riley Kate, or as he calls her "Sweetie Sweetie." She absolutely adores him, and they are like two peas in a pod!!
LeBonheur was ready for us! When we arrived, we were immediatley rushed upstairs straight to the ICU. The nurses and doctors already knew all about what was going on with Riley Kate, and before I knew it, our room was full of different specialists, each with their own ideas and plans about how to approach the situation. I answered all their questions and listened to them hash out what to do first. I was so amazed at how quickly they acted, and I, being a medical proffessional myself, was very impressed with all of them.
My poor baby had tubes and wires everywhere and was hooked up to what seemed like so many machines! It felt like a bad dream. I just remember holding her cold little hand and praying constantly and begging God to watch over my baby girl, still feeling calm and at peace with the whole situation. As a matter of fact, I had spoken to two of my friends on the way to Memphis, and they were amazed at how calm Jason and I were. Prayer is powerful, People, and your prayers were felt!
After several tests and what felt like days, a group of neurologists came in and confirmed the abnormal CT and the tumors in her brain. I spent the entire night and day just sitting by her bed, holding her little hand, praying to God, and talking and singing to her. After all, she is still my baby girl, even though she's 4 years old. :)
Soon after that, the diagnosis was confirmed to be Tuberous Sclerosis Complex due to the pattern of the tumors in her brain that showed up on the MRI. I immediately started thanking God because even though this was not great news, we now knew what this was, and we could start developing a game plan on how to address it. The next step was to wean her off the ventilator. She had been pretty heavily sedated for almost 24 hours, so the doctors said it might take a while to wean her off, but it didn't. As soon as they started decreasing the sedation meds, she started moving around and waking up, so they had to go ahead and remove the tube. She did so great!! As soon as they took it out, she looked right at me and said "Hey, Mommy," in a weak, little hoarse voice. It was the sweetest moment--I'll never forget it! Then she wanted her daddy, and she said she wanted a snack, so we knew she would be back to normal in no time!!
After several hours of observation, they finally sent us up to a regular room! Yay! We were so excited! I cannot even begin to thank everyone who visited us, brought food, called, sent texts, facebook messages, emails, and most importantly, prayed--you all touched a special place in my heart, and words cannot express my grattitude. I was so overwhelmed with all the love everyone poured out to us, and most of all, for all the prayers being sent up for Riley Kate. It brings tears to my eyes just thinking of so many people taking time out of their busy day just to pray for my baby girl--it's still so amazing to me! I truly believe in the power of prayer, but now I have experienced it in such a big way! Prayer is powerful, and it is the very reason why Riley Kate is doing so well today!
We spent a couple of days in LeBonheur having more tests run and being observed. Riley Kate had an EEG, renal ultrasound, echocardiogram, MRI, tons of labs, and was examined by so many different doctors, but she did so amazing!! All of those tests and examinations can be very scary and intimidating to a 4yr old, but Riley Kate followed every instruction given to her perfectly. She was such a great patient! I was so proud of her.
After we were discharged from ICU, we were invited to a Christmas party in the lobby with Santa Clause. Of course, we went, and it was so awesome for Riley Kate! For a minute, she forgot what all she had been through, that she was sick, and that she was in a hospital. For those few minutes at that Christmas party, she was just a little girl mesmerized by Santa and overcome with giddiness and excitement! I couldn't stop thanking the people who volunteered to arange the party. I know that we all have helped with functions similar to that before, but I really never knew just how much it meant to those involved.
Finally, they gave us the green light to go home-Yay! Riley Kate was so excited! She was sooooo ready to be at home with her whole family. We are so blessed that we got to go home and that Riley Kate has been doing so well! She is currently on seizure medication, and we are awaiting our appointment in February with the TSC specialist, Dr Wheeles at LeBonheur. We cannot thank everyone enough for all of the love and prayers, and we ask that you all continue to lift up Riley Kate in prayer. May God bless you all for the kindness you have shown to our family!! :)
Brantley's 1st snow!
All 5 of us in the snow
Wow-it really started coming down!!
It was like a blizzard!
The snow was coming down so hard, it hurt a little bit when it hit our faces!! That's probably why Sister has her eyes closed!!
Sweetie-Sweetie!!
Snow Dancing!!
My Dad got so tickled at Brantley in his snow suit. It was funny!
Poor Brantley couldn't move in the snow suit, but he never fussed!!
He kind of looks like a Hershey Kiss-haha!!
DaDa with his little man!
