Hospital Day 2 & 3

Okay I thought I would update everyone, so here it goes…

 

Day 2

We were transfered back into the Peds. Er, and we waited a couple hours for a room. Then we moved upstairs into my room, which is huge and awesome. My friend Hannah (from DYNA) came over and brought cookies and some card games and we talked a little but until she had to go. The nurses and doctors came in as usual and everything was good. So that was day two

Day 3

The nurses drew my blood in the morning while I was half – asleep, and they sent it in to be tested, we are still awaiting the results. My friend Hannah came by and brought some yummy cake and pasta, and we played apples to apples. Then we went up to the playroom, we played a couple different games before we had to return back to my room because I started convulsing. Then Hannah left, and the nurses made their rounds and everything. I got a really bad headache around 9 and went to bed at 10, then the nurse woke me up to take my blood pressure, she took it three times and was like, “Are you okay?”, my blood pressure was really low and so was my heart rate, the first time it was like 54/33 and my pulse was 57. It’s suppose to be at least 90/50 amd heart rate 70ish. The nurse kinda freaked out lol. So that was day 3

In the Hospital…Update

Hey everyone, I’m in the hospitial at UNC, so I might be here a few days. I was admitted due to rapid decline in my health. So I will update you on what’s going on.

The first day…..

I arrived at the hospital, we were told to come in through the ER, so we came although my name wasn’t even in the computers! Apparently, there was some miscommunication with my doctors. So after I arrived we got a room in the ER and the doctors asked me all the general questions and that fun stuff. So we waited to be admitted, because we were unaware of the mix-up. I got a roomate about 30 minutes after we arrived. My ER doctor at the time wanted me to stand up, so with my parents at both sides I stood up, and of course fainted. They decided to take my vital signs, and when they took my blood pressure I passed out in my wheelchair. So they decided to call neurology, because neurology was suppose to admit me. So the neuro came in and checked me out, and left soon after. A little bit later I left the room, with the aide of my wheelchair and upon returning I went into convulsions. So the ER people called the neuro back down and she ruled it was non-epileptic, which we already knew. And right before she left she said “Whats your name again?”, which made me kind of upset. So a couple hours later they decided to move my bed into a different room. So while I was in the hallway, I went into convulsions, there were some other patients in the hallway who crowded around me, and looked horrified. So I arrived in the other room, and they decided to do some blood tests. They took my blood samples and left, and after that we were sitting there for a couple more hours. Then the doctors came back in and told us they were’nt going to admit me, but after a couple of hours of my parents pushing, they decided to call my cardiologst (who was the one who wanted to admit me to begin with) and he said to take my vital signs sitting and standing for 2 and 5 minutes. Whats the problem with this? I can’t stand up, so my dad ended up holding me up while they did it. So later they decided to put me on fluids because my heart rate was too high and they thought I was dehydrated. The doctors finally agreed to admit me, but I would have to stay overnight in the ER, and I would have to switch from the Ped. ER into the regular one after 2 because the Ped. ER was going to be closed. So they switched me to the regular ER. Then I went to sleep, while my mom went to sleep in my wheelchair and my dad slept in the car. So that was my first day, I will update you tommorow, even though today was my second day.

An Update

Hey everyone, I thought I would update. So far my health has declined. I haven’t been able to stand up without falling. I also have been still having “episodes” or my convulsions. Hopefully, I will be able to see Dr. Abdullah who is a POTS specailist. I’m hoping for things to get better soon!

An Attempt at Art Club

Hey everyone! Yesterday I tried to go to Art Club at Grimsley, although it didn’t go so well, so here’s the story.

My mom drove me to Grimsley and we arrived about ten minutes late. I went into the vocational buliding and eventually found the room Art Club was in. As soon as I came in I started shaking, and wasn’t feeling well. After about 20 more minutes the meeting was over. One of my friends in the Art Club saw I wasn’t feeling well and took me into her mom’s office and we talked(her mom works at Grimsley) I spent about 20 more minutes in there and then I went back outside to meet my mom. On my way out I saw Rakayat, Alec, and Zak, and I waved to them. Although they were kinda looking at me strange since I was shaking. So after I waved to them, I got into the car. Waiting me inside the car was a Mcflurry, yumm! So I started eating my Mcflurry and took some medicine, I was still shaking though. After about 10 minutes of riding in the car I started to go into one of my “episodes”. We arrived home and I was still convulsing. I opened the door and attempted to get out of the car but ended up planting myself on the gravel. I had to get my sister and my mom help me get inside the house, so it took awhile. After I got inside, I laid on the floor and after another 20 minutes it subsided and I was able to pull myself onto the couch. 

So that was my attempt at going to an Art Club meeting, hopefully next time it will be better.

An Update :)

Okay so I wanted to get you caught up with everything that has happened since I last posted. Well, my “episodes” are still pretty bad, luckily I have a new medicine that helps with that though!  I fainted this morning, which didn’t hurt me at all, but it did scare the crap out of me! I also went to the “Walk the Schedule” at Grimsley yesterday, although I didn’t actually walk, lol.  It was very hard to get around Grimsley though, there were stairs(on the 3rd floor main) that I needed to get up in order to get to my last class. So, I ended up having to get out of the wheelchair and having someone lug it up the stairs. I almost passed out trying to get out of my chair! I didn’t realize that Grimsley was so unfriendly as far as acessablility. So, with that said, if I am able to go to Grimsley, I will have to move my classes around so I can use my wheelchair. Also, my sister got braces, which is cool, i guess. Also, on Saturday, I’m going to go to a “Mini Chill” to meet up with my fellow POTSies. So, I’m really excited about that! Okay, so thats it, I’ll update you in another week!

An Inspirational Song

We sang this song at the DYNA Chill, it’s very insparational, so I thought I would post it.

Stand Back Up lyrics

Go ahead and take your best shot,
Let ‘er rip, give it all you’ve got,
I’m laid out on the floor, but I’ve been here before,
I may stumble, yeah I might fall,
IM Only human but aren’t we all?
I might lose my way, but hear me when I say,

I will stand back up,
You’ll know just the moment when I’ve had enough,
Sometimes I’m afraid, and I don’t feel that tough,
But I’ll stand back up,

I’ve been beaten up and bruised,
I’ve been kicked right off my shoes,
Been down on my knees more times than you’d believe,
When the darkness tries to get me,
There’s a light that just won’t let me,
It might take my pride, and tears may fill my eyes,
But I’ll stand back up,

I’ve weathered all these storms,
But I just turn them into wind, so I can fly,
What don’t kill you makes you stronger,
When I take my last breath,
That’s when I’ll just give up,

So, go ahead and take your best shot,
Let ‘er rip, give it all you’ve got,
You might win this round but you can’t keep me down,

‘Cause I’ll stand back up,
And you’ll know just the moment when I’ve had enough,
Sometimes I’m afraid and I don’t feel that tough,
But I’ll stand back up,

You’ll know just the moment when I’ve had enough,
Sometimes I’m afraid and I don’t feel that tough,
But I’ll stand back up.

I thought this was kinda funny :P

I found this list from the DYNA Frogs group on facebook, and I thought I would share. DYNA, is a non-profit organization helping youth with dysautonomia. Their website is dynakids.org

You know you have dysaut when…

1. Your parents tell you to drink before you drive.
2. You get mistaken for Casper the Ghost.
3. You carry salt packets in your purse.
4. You hear a truck backing up and think it’s your pump beeping.
5. You have tried every flavor of Gatorade.
6. You tell people you have autonomic failure and they recommend a good transmission repairman.
7. Physics is your least favorite subject because you hate gravity.
8. Your doctors send you Christmas and birthday cards.
9. You make Jell-O shots with Pedialite.
10. On a date, your heart races even if the other person’s ugly.
11. The IV team says they like a challenge…until they meet you.
12. You are very patriotic and can turn various shades of red, white and blue.
13. You can read your own echo’s and EKG’s.
14. Your latest embroidery project is a wall hanging proclaiming “God Bless Zofran”.
15. Medical students ask to borrow your notes.
16. You use your insurance card more than your visa card.
17. You are blood doping and taking speed or narcotics…legally.
18. You’ve been home from the hospital for two weeks and are still measuring pee.
19. You’re thankful for steroids because finally there won’t be leftovers after Thanksgiving.
20. You tell people you have pots, and they say, “let’s light one up and party!”

National Dysautonomia Awareness Week

Hello everyone,

I would like to say that this week 14th-20th is National Dysautonomia Awareness Week. So please help me spread awareness! If you can or want to you can spread awareness by wearing a blue ribbon throughout the week.

 

Thanks!

About our puppy! :D (by Sarah’s sister!)

We just got a new puppy named lily!

She will follow you around the house and loves everyone (especially Sarah)

She is about 5 months old

so she’s still not done growing!

She is awesome and me and Sarah love her!

<3

-Reena (sarah’s little sis!)

Inspirational Quotes

~ Fall seven times get up eight

~The best dreams happen while your awake

~Life has no limitations but the ones you make

~If you want your life to be a magnificent story, then realize you are the author and everyday you have the opportunity to write a new page

~Our greatest glory is not in never failing, but in rising up everytime you fail

~Keep your face to the sunshine and you will never see the shadow

~Don’t count the days, make the days count

~Dance as though no one is watching you, Love as if you have never been hurt before, Sing as though no one can hear you, Live as if heaven is on Earth

~Only those who dare to fail greatly can ever achieve greatly

Tell me if you have anymore inspirational quotes you would like to share, Thanks!