Hospital Time!

The day after my last post (on June 27) I was driving to Dallas with my family to see my doctor. But on the way I was getting so dehydrated that I passed out in the car again. My doctor told me to go to Medical City Hospital and he would call ahead so a room would be ready for me when we arrived. When we got there I had gotten so dehydrated that I was passing out in the lobby. When this happened they 'coded' me. This means that all the security, doctors and nurses near by rush over to get me on a stretcher and run me to my room. Because of my EDS, however, this was a big problem! Even though my parents were yelling for them to be careful because my joints sublex, the doctors and nurses main priority was to get me on that stretcher and move me. While they were picking me up all my joints were popped out of place and when I came to later my joints felt like I had been run over by a train. For the next week I spent every day getting fluids and taking pain medications. The only way I could eat was by drinking supplements and getting fed through the IV. Annoyingly, they had to redo my IV everyday. By the time I left had had 7 IVs and 3 other try spots. I had some really great things happen in the hospital though!

The first thing was that on the second day of my stay the physical therapists brought me a walker to use. It helped so much! I am much steadier when I use it because pressure is taken off my lower joints and that makes them more stable. After trying it for a few days the doctors wrote a prescription and had one delivered to my room that I could take home. I love using it. It really helps reduce stress on my lower body.

The second thing was that I found out that pain medications help my joint and stomach pain! This was such a great relief during my stay. I was comfortable for the first time in a long time! The doctors decided that it would be okay if they prescribed them to me for home use.

The third thing was that my doctor was trying a medicine called Mestinon to help my stomach. It didn't help my stomach at all. But, it did help my POTS! It lowered my blood pressure and heart rate. So now I am more of a regular potsy! I am no longer a hyper potsy, which is wonderful!

The fourth thing is that I had two great friends come visit and a great family friend. Those visits were so wonderful! Being visited in the hospital is so great because laying in a bed all day gets pretty boring.

• My first visitor, who came twice(!!!), is named Nicole! She is a really great girl who is dealing with problems similar to mine and even sees the same doctor that put me in the hospital! She brought me a beautiful POTS awareness bracelet, which I haven't taken off since she gave it to me! She also brought me word puzzles and a really sweet card. It meant so much to me that she visited, Thank you Nicole!   

• My second visitor is a friend from Baylor University named Kaleigh. She drove an hour and a half to see me! How special is that?! She also is dealing with some medical problems so we have a special bond. When she visited, we took a jaunt around the hospital with my family. When we were in the kids area she realized that she had been there when she was a kid! She remembered it because of the whale (in the picture below) and because at this hospital the speed limit is 11 mph, which is a wee bit strange. Thanks for visiting Ka!!! It was a ton of fun!

• My third visitor, well visitors, was from our family friends. My brother is friends with the son and my mom is friends with the mom! Overall, the family is just wonderful! They took care of our cat for us the whole time I was in the hospital. Their daughter had a dance competition up in Dallas so they brought my family their pills and extra clothes. AND they took my brother for a day of fun at a water park. This family is a God send. Thank you for all y'all have done for us!

The fifth thing is we found really great tasting nutritional/meal supplements! Ensure Enlive! comes in two flavors, mixed berry and apple, and has no fat plus more nutrients then regular Ensure. The hospital said that you can find it in stores but we couldn't find any near us (you can search for it on the web site). That is okay because you can order it online or by phone, online is better because you get free shipping. For me to reach my nutritional needs a day I need to drink three Enlives and have three cups of Greek yogurt. On the day before we left the hospital we ordered two cases to be delivered to our house and hopefully they will be there within a few days. The people at the hospital were kind enough to give us some horrible orange ones, Orange Breeze. Okay, they aren't that horrible! I just don't like the orange taste and the pulp you get in your mouth.

The sixth thing was that I got some really neat goodies from my awesome family!!!!!!

(my new hippo, we named him Hugo)

(an awesome get well balloon)

(a super snuggly teddy bear)

(it's hard to see but I am wearing a hippo necklace that Ben bought me and he also bought me a hippo night light but I don't have a picture of that )

We also had some very fun and interesting times!

On the third or fourth day of my stay, there was a lot of commotion on the floor and all the nurses became super busy for an hour. Later that afternoon my nurse came in and said that a convict had been brought in and he had every kind of drug in his system. It was crazy. That night his mother was trying to spend the night with him and she got into a yelling match with the guards outside his room (but she lost the match and had to leave). For the next two days there was extra security on the floor so we decided to steer clear of his side of the hallway during our walks just in case anything crazy happened.

On the fourth of July I wanted my brother to see fireworks but he wouldn't go with out me. So we decided to figure out where the best view of some fireworks near the hospital would be and most everyone we asked told us to go on top of the main parking garage. That night at around nine we told the nurse that we were going on a walk off the floor. When we got downstairs we thought that it would be best to go out the B doors because there would be less people, but sadly when we got there the doors were locked.  Now the only way to get out was the front doors! We decided to take the risk. No one noticed us!!! We got on top of the parking garage in the nick of time! I was so glad he got to see fireworks. After the fireworks we went back to the floor and none of the nurses suspected a thing! Fireworks mission was a success!!

The most important thing I learned in the hospital is that my family is amazing. My brother wouldn't leave my side until I made him! My parents stayed with me in Dallas the whole time, they just bought clothes and everything they needed at Walmart . I love my family so much.

When we checked out of the hospital we had to stay in Dallas for the night so we could go the next to my doctor for a follow up. The doctor told us that I had been taking the wrong dose of Reglan. Neither my primary care physician nor I knew that a POTS patient had to take a much lower dose then a regular person. This explained a lot! Every time I had taken my Reglan I had had an adverse reaction to it. Hopefully now when I take it at a lower dose it will help instead of making me hyper active. My doctor also told us that he was going to write a prescription for me to get IV saline therapy three times a week in my town instead of me having to drive three and a half hours to his office every time.

Sadly, my doctor didn't have time to give me an infusion in his office. So the day after we got home we had to make a trip to the ER to get my saline there. My favorite doctor, Dr. Ross Tobleman, was working. He came in and talked to my father about the Red Soxs for about 20 minutes. He is such an awesome guy! I love that he takes me seriously, most doctors don't take my case seriously because it is so complicated. Sadly, lots of POTsys and Zebras have this problem as well. It is too bad he is just an ER doc because I would love to have him as my PCP. Don't get me wrong, my PCP is already amazing but I like that Ross is so funny and caring.

Forever Flexible,

Hallie Rose