Disneyworld and Pneumonia

What started out to be a fun-filled week in Florida ended with a 3-day stay in the hospital for Miss Whit.

Originally, we had planned to go to Utah to see Jason's aunt, uncle, and brother for Spring Break. However, after lots of thought we decided that we would just go to Dallas for the week and hang out with Gigi. When Gigi found out we were going to spend Spring Break with her, she decided to take us all to Orlando! Clearly we had to drive since airfare for our family would be outrageous. So, we began our trip on Sunday morning and drove from Dallas to New Orleans. We walked down Bourbon Street (on a side note, I DO NOT recommend taking your kids to Bourbon St!!!!!) and stayed the night, then woke up early Monday and finished the drive to Orlando (Kissimmee). We stayed at a beautiful resort there complete with swan shaped paddle boats, 16 pools and a miniature dinosaur-themed golf course! The boys had a blast. We visited Magic Kingdom at Disneyworld and went to Universal Studios.

While we were at Universal Studios on Thursday, Whitney started running a low-grade fever. By the time we hit Hard Rock Cafe for dinner I could tell that her fever had risen and she was refusing to eat or drink. So, we left the park after dinner and stopped at a Walgreen's to pick up some Tylenol and Motrin before heading back to the condo. Her fever went down a little bit, but she was still really warm. However, she wanted to sleep after such a long day, so we put her to bed. She was up most of the night making little moaning noises, almost like she was struggling to breathe. I put her in our bed so that I could be closer to her and kept watch over her through the night, only dozing off for minutes at a time. By morning her fever was up to 103 degrees and she was coughing and still refusing to eat or drink. We gave her some more Tylenol, but this time her fever was not budging. We waited a few hours and tried Motrin, but still no luck. Gigi stayed in the condo with Whit while Jason and I took the boys to ride the paddle boats, and when we came back to change into swimsuits to head to the pool, Whit was coughing and unable to nap and still running high fever. So, I decided it would be a good idea to have her checked out. We had a LONG drive ahead of us that was supposed to begin Saturday morning and I didn't want to risk her getting sicker on the trip home. Since it was Friday afternoon, there were no doctor offices open. We decided to take her to the Florida Hospital ER, which was in Kissimmee about 4 miles from where we were staying. Gigi stayed behind with the boys so they could swim.

When we arrived at the hospital, they took her vitals and were concerned that her fever was 103 and her oxygen saturation was hovering around 90-92%. They found a bed for her, in the hallway, and we waited for a doctor. The doctor thought she had RSV, so they tested her for RSV and Strep, but both tests came back negative. Still concerned about her oxygen levels, the doc decided to do a chest x-ray just to rule out anything. That's when we learned that she had Pneumonia in her right lung. I was so glad that I decided to take her to the ER. There are so many stories lately of people having complications from pneumonia, so thank God we caught it early. They put her on an iv and administered a strong antibiotic, drew some blood, took a urine sample, and gave her some breathing treatments. Then, we were told that the Kissimmee hospital did not have a pediatric unit, so we would have to be transferred to the downtown Orlando location which was 30 miles away. So, we were stuck in an ambulance and taken to Disney Children's Hospital (Florida Hospital's pediatric hospital). That place was amazing! It was soooooo nice. Her room was on the 14th floor and had huge windows that overlooked downtown Orlando. We had a huge flat screen tv mounted on the wall with free access to the top Disney movies out as well as a list of other movies including The Proposal. The room was all new and even the bed was fancier than most other baby crib hospital beds we've seen! It was swanky :)

After staying the night we saw a doctor the next afternoon who explained that he didn't typically like to send pneumonia patients home until they were fever free for 24 hours. He said that he could discharge Whitney if we really wanted to leave, but he recommended that she stay another night to give her a chance to do well on the long road trip and prevent anymore hospital stops along the way. We agreed to stay and I'm so glad we did. Her fever continued to rise again and she was having high blood pressures. She also pulled her iv out, so they had to administer her antibiotics by injection. Poor little Whit had lots of needles poked in her little legs during the 2 1/2 days we were there. Her lungs were sounding better and her oxygen levels were up some. The next day she was able to hold her fever down to 100 degrees or less, so we decided to go ahead and check out and were sent away with an oral antibiotic. She did well on the drive back to Texas. We stopped in Pensacola to stay the first night and then drove to Dallas where we dropped off Gigi and picked up our dogs who had been staying with my sister. We finally made it back to Abilene Tuesday night. The boys missed two days of school and then I forgot to reset the clocks at home, so they were late to school on Wednesday! ugh.

On Wednesday we took Whit to see the Pediatrician in Abilene to check her lungs and also ask about the high blood pressure, which she was still having. He said her lungs sounded good and sent us to Hendrick Children's across the street for LOTS of blood work. My little angel just doesn't catch a break lately :( After 2 sticks, one in each arm, they finally got enough blood for all the tests. We are also scheduled for a sonogram of her kidneys next Monday morning. We are waiting to hear what the blood tests showed, if anything, to get some answers about her high bp. They are checking her kidneys to make sure there's no problem there. Sometimes kidney problems can cause blood pressure to rise.

In the meantime, we got Whit's new wheelchair! I'll post a pic and tell more about it and her test results when I know more. It's late and I need sleep!!! :)

Opisthotonic Sterotypies with Cognitive Dissociation

Don't worry, we couldn't pronounce it either. Whit was monitored for 24 hours and it was determined that she is not having seizures. The event that happened last Monday night where she seemed out of it and tired afterward was a perfect example of her new diagnosis. We've known that she has these episodes of opisthotonic posturing, but never could seem to get anyone to explain what it meant and why she was doing it. ...until we met the doctor that visited us while in the Epilepsy Unit this week. He happens to be a Movement Specialist and Neurologist who works in the same office as her current Neurologist and Neurosurgeon. He explained that there are many kids that have stereotypies. They are similar to tics. The difference is that tics tend to start later in childhood and are typically unilateral, meaning happening on one side of the body. Sterotypies are typically bilateral and start at an early age and tend to be more involved than tics. Whit uses her whole body to arch her back leaving only her heels and the top of her head touching the floor. She then flails her arms wildly and pants. Sometimes she holds her breath, but doesn't pass out. The doctor explained that when she holds her breath, she is experiencing "cognitive dissociation." Kind of like being in a zone, but not completely absent-minded.

As much as we are relieved that she is not having seizures, we are now concerned about the extent to which she carries out these episodes. She seems not to have control over when and where they happen, hence the reason that she cannot sit in a highchair or other seating that does not have a back on it, not even a shopping cart. She often throws herself backward and with her high pain tolerance, she is certain to hurt herself if we don't keep tabs on it. The doctor explained that sometimes when kids get older and realize what they're doing they may be able to exchange the action for something less "obnoxious." (that is my word, not the doctor's!) We are hoping that is the case. I would hate for her to be walking someday (assuming she will walk one day) and fall backward to put herself into this posture. It kind of looks like she's a member of the Cirque du Soleil! She's very flexible :) I have started joking to the boys that Whit is playing Twister when she does it! You have to learn to make light of situations to keep the sadness away sometimes!

We are happy to be back home to our boys and get things back to normal. They were all very worried about their baby sister and were so relieved when they heard that she was just fine.

It's funny how things work. Just when I think to myself that it's been a while since we made a trip to Cook Children's we seem to be back on the road for something new. I'm hoping things are going to calm down for a while. Hunter and Chase are both playing soccer and baseball. Hunter's baseball team is practicing 3 times per week and he has soccer twice per week. Chase's teams each practice once per week. Things are already crazy enough around here with that kind of schedule!

CT Scan and Another Trip to Cook Children's

Whitney has been "arching" a lot more lately and her speech therapist even mentioned last week that Whit's forehead seemed to be bulging more than usual. Whitney was running a low grade fever on Wednesday of last week, so I took her in to see her Pediatrician on Thursday. Both of her ears were infected which makes the second ear infection in 40 days :( Her ears have stayed infected ever since she was taken off her preventative antibiotic for the kidney reflux. Her tubes fell out earlier in the year. Anyway, we discussed putting her back on a preventative antibiotic to try and keep the ears healthy and avoid another procedure (ear tubes) since she's had so much done lately.

While we were at the doctor's office, I mentioned that her speech therapist commented about her head seeming bigger. He asked his nurse to measure her head, and sure enough, he agreed that it had grown a bit too much for his liking in the past 2 months. So, he made a call to her Neurosurgeon to see what the plan would be.

In the meantime, Whitney was feeling better, but still arching (opisthotonus) like crazy over the weekend. Well, last night (Monday) Whitney was playing on the living room floor and we noticed she suddenly got quiet and turned onto her side, but still arching. Jason went over to pick her up and he said that she was "out of it." She just stared at him and seemed like she was dazed. He also said that her pupils were two different sizes. He talked to her and tried to get her to respond, and finally after a few minutes she became alert. However, she was really groggy and tired right afterward for several minutes. Then, I went back into the living room where she had been playing and found a huge chunk of her hair on the floor. I guess she'd pulled out her hair during this "episode" and never uttered a peep about it. We were concerned, so I called the doctor on call. He recommended that we watch her overnight and if she didn't have another episode to bring her in to the office this morning (Tuesday). So, we took her in this morning.

The Pediatrician evaluated her and listened to our story and decided he thought she'd had a seizure. So, he called the Neurosurgeon and Neurologist again and we have an appointment set up for Thursday morning at Cook Children's with the Neurosurgeon. The nurse from that office called today and recommended that we bring a CT scan, so we had to run over to Hendrick and get a STAT CT scan today. The nurse at Cook also told us that from now on we should skip the calling the doctor bit and bring her directly to the Cook ER if we suspect seizure activity given her history. We were told to expect to stay overnight on Thursday if the doctor feels that she needs to be admitted for evaluation. So, we are headed to Fort Worth on Thursday morning bright and early praying that everything is fine. I'll update when we know more.