Things have been interesting here the last few days. We have a bit of a "Greys Anatomy" drama that is ongoing. One of these days I'm going to have to do a post just on that drama. Yesterday was not to eventful for me. One of my friends went down for surgery and the surgery went well. I found out today she isn't quite progressing like she should so I'm a bit worried about her. Another friend went to surgery today but she is doing great! Yesterday her mom pointed out that she has been saying things like me and using my mannerisms. I thought that was really funny. Then Thursday another one of my friends is going to surgery, at Children's.
Today I got a bit of happy news. I gained 2.2 pounds (1 kg)!!!!!!! Now to just keep gaining. I got to see Dr. Lenke today. He said everything is looking good. I got to see my x rays. I can see an improvement again! Although I did find out one person up here may be getting their Halo off during their first surgery since they've gotten so much correction. That was kind of discouraging to me because I've gotten more correction! But I know the doctor knows what he is doing so whatever. The Halo isn't really that bad. The worst part is not being able to sleep on my stomach which I won't be allowed to do for six months after my surgery! Thankfully, I'm getting used to sleeping on my back and side. Tonight we played "Minute to Win It". I did really good! I won a monopoly game, a blanket, a beanie baby, and a lady gaga CD (don't judge me, you didn't see the other choices)!! Finally I win some good stuff!
It's so weird everyone is starting to have their surgeries except me! By the time I go for my first surgery 4 out of 7 will be gone! Then if I come back in between my surgeries everyone will be gone!!! That's sad but happy. I have 22 days till my first surgery. It seems like it will be easier for me when I go for surgery having seen the rest of my friends go and come back. I'm just SO ready for this to be all over, for me to be home and not have to spend time in hospitals anymore for a good long while!!
Tuesday, March 29, 2011
Sunday, March 27, 2011
2 inches
This morning I got to sleep in a little more, till 8:50. I had lots of visitors today which was a fun surprise. I also got good food for lunch and dinner! I hung out with my Halo buddies and went to RT. Dr. Anderson came in and hung out with us a bit again. I felt fine all day till the evening. I was really excited that lately I had been able to get out of traction without it hurting too badly. That all changed today. At dinnertime my neck and head started to hurt. I took some Tylenol but it didn't really help. Later on when I went to get in my walker it hurt so bad I thought I might cry. When I got back into traction it felt better but the pain never got much better. Finally tonight I asked my nurse for something stronger. She called the doctor and got me some Flexerol. It was a pill and I swallowed it successfully. That was happy! Earlier, when I was in my walker, my one nurse said I look taller. I told her I am. She asked how much but I said I didn't know they hadn't measured me. So she measured me. It's not exact because it was hard to do with me in traction but I'm roughly 5'1.5"!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! That would be 2 inches taller!!!! I'm am so excited!!!! I can't wait to see how tall I get!! I'm really hoping my neck feels better tomorrow!
I was already tired before the medicine but now I'm really getting tired. I think I'm going to head to bed early tonight.
I was already tired before the medicine but now I'm really getting tired. I think I'm going to head to bed early tonight.
Saturday, March 26, 2011
Snow in spring
Yesterday was a good day. I found out in the morning Angela was coming to see me!! She stayed for a few hours. It was so good to see her!! I'm up to three miles on the treadmill! I hung out in RT in the afternoon and evening. One of the residents came up and hung out with us for a while. He made a bet with the one guy up here that if KU lost he would let me paint his nails but if they won I would get to paint Josh's nails again. KU won so I get to paint Josh's nails again. There were only 6 patients overnight, we were all Halo patients. After RT 4 of us got together to have a "pickle party". I had a jar of pickles that we finished off very quickly. Then we froze the juice so we could have pops. Yes, I know it sounds gross but I think it will be good!
This morning I wanted so badly to sleep in!! I got to sleep till 8:30. My nurse came in gave me nasty medicine, took my vitals, and shined a light in my eyes. Then she said I could go back to sleep, yeah right! I got up and got ready for the day. Then down in RT they had us make Easter baskets. It was pretty lame, but it did turn out to be fun because one of the residents came down and hung out with us. We all ended up having a cotton ball fight and he pushed me around (in my wheelchair of course).
The rest of the day was spent just hanging out. We all went down to RT for a while. Oh and it snowed. . . ALL day long!! There was so much snow!! The RT room was so cold the nurses went and got us all sweatshirts! Then there was the drama. Life here is like a season of Greys Anatomy, PG-13 style. Having one boy and lots of girls causes so issues. Basically every girl, except me, is falling for that one boy. It's been quite interesting! This evening I painted Josh's nails as we stated in the bet.
I'm always up pretty late here, but once I hit the bed I'm out most nights. I wonder if I will get to sleep in tomorrow morning. . .
This morning I wanted so badly to sleep in!! I got to sleep till 8:30. My nurse came in gave me nasty medicine, took my vitals, and shined a light in my eyes. Then she said I could go back to sleep, yeah right! I got up and got ready for the day. Then down in RT they had us make Easter baskets. It was pretty lame, but it did turn out to be fun because one of the residents came down and hung out with us. We all ended up having a cotton ball fight and he pushed me around (in my wheelchair of course).
The rest of the day was spent just hanging out. We all went down to RT for a while. Oh and it snowed. . . ALL day long!! There was so much snow!! The RT room was so cold the nurses went and got us all sweatshirts! Then there was the drama. Life here is like a season of Greys Anatomy, PG-13 style. Having one boy and lots of girls causes so issues. Basically every girl, except me, is falling for that one boy. It's been quite interesting! This evening I painted Josh's nails as we stated in the bet.
I'm always up pretty late here, but once I hit the bed I'm out most nights. I wonder if I will get to sleep in tomorrow morning. . .
Thursday, March 24, 2011
Milkshakes!
Yesterday was an interesting day. I had some visitors that brought me a very delicious milkshake, probably the best i had ever had. Then I actually watched tv, for the first time in over a month!! Crazy!! Bingo was as always,an epic fail. I never win anything good!! After bingo we got our Halo group together around the nurses station. Josh, the only boy, had promised to let me pain his nails. He kept his promise. There was a crowd of patients, student nurses, and nurses around us the whole time. I have to say they looked very good. I was able to make pretty good looking flowers on a very small nail space. However, it didn't last long. I didn't expect it to. Then before bed we all said goodbye to Megan. It was sad. She was a crazy little girl but she was so sweet. Every night she came in and gave me a hug before bed. Her surgery was today and from what I've heard it went well.
Today was a very good food day. For breakfast I had a leftover donut that someone brought me from Dunkin Donuts. Then for lunch Ellen and her daughter, some friends, came and brought Mcalisters. It was delicious. I got my x rays done right before I ate. Then this afternoon I had to go get pictures done. It was awful, I hate that!! It was really awkward because it was a guy. But this time I did get to wear a halter which helped. After that I mediated a dispute between the two Kimberly's so now all is good. Yesterday I was forced to stay while Kim told Josh she liked him. These last few days have been my own living, watered down "Greys Anatomy", pretty exciting I must say. For dinner we all got to order from McDonald's and I ate all my food. Then as I was going to the RT room one of Angela's friend stopped by to bring me a smoothie. After the activity, in which I got a crappy prize a stuffed worm, I started to drink my smoothie. Then not too long after that in walks my resident. What was in her hand? None other than a milkshake for me. I told her I feel like I'm a cow they are fattening to slaughter. She thought it was funny, okay maybe it was a little bit funny. I feel so full it's crazy!!
The last two days have been pretty busy which has made them seem to go by a bit faster. I am just hoping they keep going this fast. I'm also hoping for some warm weather so I can go outside again. None of this snow stuff, it's March!! I also would love to get to sleep in!!!!!!!!!
Today was a very good food day. For breakfast I had a leftover donut that someone brought me from Dunkin Donuts. Then for lunch Ellen and her daughter, some friends, came and brought Mcalisters. It was delicious. I got my x rays done right before I ate. Then this afternoon I had to go get pictures done. It was awful, I hate that!! It was really awkward because it was a guy. But this time I did get to wear a halter which helped. After that I mediated a dispute between the two Kimberly's so now all is good. Yesterday I was forced to stay while Kim told Josh she liked him. These last few days have been my own living, watered down "Greys Anatomy", pretty exciting I must say. For dinner we all got to order from McDonald's and I ate all my food. Then as I was going to the RT room one of Angela's friend stopped by to bring me a smoothie. After the activity, in which I got a crappy prize a stuffed worm, I started to drink my smoothie. Then not too long after that in walks my resident. What was in her hand? None other than a milkshake for me. I told her I feel like I'm a cow they are fattening to slaughter. She thought it was funny, okay maybe it was a little bit funny. I feel so full it's crazy!!
The last two days have been pretty busy which has made them seem to go by a bit faster. I am just hoping they keep going this fast. I'm also hoping for some warm weather so I can go outside again. None of this snow stuff, it's March!! I also would love to get to sleep in!!!!!!!!!
Tuesday, March 22, 2011
Good news
I love good news and I love sharing it so this is going to be great! There was a bit of a miscommunication between the nurses and doctors about my weight. The nurses informed my doctor that I had lost weight since coming here and that set off his concern over my weight. In actuality I gained some weight since coming here, I lost a little bit of it, but I am still more than when I got here. The blood tests that my resident ordered came back great. All my levels are in the normal range and they are not even in low range of normal. She said as long as I can maintain those levels I will be fine. At one point here actual words to describe me were, "pitifully small but not malnourished". Good to know! I may be small but everything is as it should be!! Maybe this will reduce a bit of the pressure that's being put on me to shovel food!! Although, I still will be trying to gain weight I just know its not going to hugely affect my surgery and recovery. The doctor is going to start me on antibiotics for my pin site just to be safe.
The rest of yesterday was pretty enjoyable. I got to spend some time with Angela in the morning before she left which was so good. Then I had some other great visitors that brought me some beautiful purple tulips! I also put up some of my cards and other stuff and now my room looks a bit more cheery! Then in the afternoon I went outside and enjoyed some quiet time. It felt so good out, so warm!! I love the sun! I've got one month left to get the sun before I won't be able to for a while so I'm going to enjoy it. Then for dinner I got the same thing as usual but I actually had an appetite!
After dinner I went to do the girl scout activity. Why? I was drug down by some of the girls. We made sock puppets, I felt like I was 10 again! Then for the boy scout activity we made penny rings, actually all we did was find a penny with our birth year. I do have to say I did have fun though. I'm not going to lie, it is pretty fun hanging out with high people and it was okay because it's a hospital and they have prescriptions!
Yesterday when I was doing my bible reading I came across this verse from Proverbs 19
Today is my one month anniversary here at Shriners. Meaning, I haven't been home in a month! I do not like that, I do not like that one bit!! I have 29 days till my first surgery. The countdown is in the 20s, I remember wishing for it to be there when it was in the 40s. I'm so thankful I've hit the halfway mark!! Hopefully this second half moves quickly!
My day today was pretty good. They fixed my wheelchair so it won't tip over anymore when I'm in it, or not in it. I got my reevaluation for PT. I don't have to do heel cord stretches anymore but I have to do hamstring stretches. They said because I use my feet to "walk" in my wheelchair my hamstrings are getting really strong but also tight. The y said I need to walk in my walker more, boo!! But they have to adjust my walker tomorrow because I am now to tall for it!! That is very happy!!! I had two people visit today who I had never met before. They started to explain how they know me and I got completely confused. They know me multiple different ways. That always happened in Cape but I thought it would stop here. Nope, i can't escape! But I don't mind. They were very sweet. They brought me lots of snacks! Then we had teen meal tonight so I got some good dinner.
Today my resident showed me my x rays from last week. There was no big change in the last week. That's okay, I've already gotten great results, I wasn't expecting too much more. She also said I have to get a central line before my surgery. That's great, more surgery before my surgery. Although, I don't think I will have to get mine too long before my surgery like some of the other kids did.
I'm hoping I get to sleep in a little tomorrow and not get poked and prodded at 7:30 again!! Too early!!
The rest of yesterday was pretty enjoyable. I got to spend some time with Angela in the morning before she left which was so good. Then I had some other great visitors that brought me some beautiful purple tulips! I also put up some of my cards and other stuff and now my room looks a bit more cheery! Then in the afternoon I went outside and enjoyed some quiet time. It felt so good out, so warm!! I love the sun! I've got one month left to get the sun before I won't be able to for a while so I'm going to enjoy it. Then for dinner I got the same thing as usual but I actually had an appetite!
After dinner I went to do the girl scout activity. Why? I was drug down by some of the girls. We made sock puppets, I felt like I was 10 again! Then for the boy scout activity we made penny rings, actually all we did was find a penny with our birth year. I do have to say I did have fun though. I'm not going to lie, it is pretty fun hanging out with high people and it was okay because it's a hospital and they have prescriptions!
Yesterday when I was doing my bible reading I came across this verse from Proverbs 19
21 You can make many plans, but the Lord's purpose will prevail.I really like this verse. I have definitely come to understand how true this verse is. This whole hospital thing was most definitely not in my plans, but even through all the difficulties in making it happen, it happened. The Lord prevailed! It is comforting to me to know I can make my plans but if they don't fit with the purpose God has in mind, he will fix that!!
Today is my one month anniversary here at Shriners. Meaning, I haven't been home in a month! I do not like that, I do not like that one bit!! I have 29 days till my first surgery. The countdown is in the 20s, I remember wishing for it to be there when it was in the 40s. I'm so thankful I've hit the halfway mark!! Hopefully this second half moves quickly!
My day today was pretty good. They fixed my wheelchair so it won't tip over anymore when I'm in it, or not in it. I got my reevaluation for PT. I don't have to do heel cord stretches anymore but I have to do hamstring stretches. They said because I use my feet to "walk" in my wheelchair my hamstrings are getting really strong but also tight. The y said I need to walk in my walker more, boo!! But they have to adjust my walker tomorrow because I am now to tall for it!! That is very happy!!! I had two people visit today who I had never met before. They started to explain how they know me and I got completely confused. They know me multiple different ways. That always happened in Cape but I thought it would stop here. Nope, i can't escape! But I don't mind. They were very sweet. They brought me lots of snacks! Then we had teen meal tonight so I got some good dinner.
Today my resident showed me my x rays from last week. There was no big change in the last week. That's okay, I've already gotten great results, I wasn't expecting too much more. She also said I have to get a central line before my surgery. That's great, more surgery before my surgery. Although, I don't think I will have to get mine too long before my surgery like some of the other kids did.
I'm hoping I get to sleep in a little tomorrow and not get poked and prodded at 7:30 again!! Too early!!
Monday, March 21, 2011
30 days!!!
So there is an important thing I forgot to mention on Friday. . . when I went for my x rays I found out *drumroll please. . . . . * I GOT TALLER!!!!!! They had to put an extender on my walker because I've gotten taller, that is so exciting for me!!
Yesterday was the first day of Spring and it was a great day!! I actually got to sleep in which was great! I hung out with the other Halos and we played some games. Then I got some pretty fun visitors!! Not too long after they came Angela got there!! They all stayed a while and it was really fun! It was almost like I was home again!! Then everyone left but Angela. We went out side and sat in the sun playying Yahtzee which felt so great to do!!! I missed her so much!!!! After our game I went out on pass and we went to dinner at a German restaurant which was really fun!! When we got back we sat outside some more. It was the pefect weather day!! Angela spent the night with me, we stayed up late and it was great!
Today is a "marker" day. One month from today is my first surgery, 30 days!! So that means 30 days from now I will be unconscious on the operating table having body part removed and added!!! I can't wait!!!!!
I haven't been taking any medicine lately, not even Tylenol. My neck seems to be getting better, it's really that sore anymore! Although they think I do have an infected pin site. It's not too big of a deal, they will just put me on antibiotics. It's just really tender to touch. My appetite is the other problem, I don't have one. But I am really trying, hopefully the two milkshakes a day help!!
Yesterday was the first day of Spring and it was a great day!! I actually got to sleep in which was great! I hung out with the other Halos and we played some games. Then I got some pretty fun visitors!! Not too long after they came Angela got there!! They all stayed a while and it was really fun! It was almost like I was home again!! Then everyone left but Angela. We went out side and sat in the sun playying Yahtzee which felt so great to do!!! I missed her so much!!!! After our game I went out on pass and we went to dinner at a German restaurant which was really fun!! When we got back we sat outside some more. It was the pefect weather day!! Angela spent the night with me, we stayed up late and it was great!
Today is a "marker" day. One month from today is my first surgery, 30 days!! So that means 30 days from now I will be unconscious on the operating table having body part removed and added!!! I can't wait!!!!!
I haven't been taking any medicine lately, not even Tylenol. My neck seems to be getting better, it's really that sore anymore! Although they think I do have an infected pin site. It's not too big of a deal, they will just put me on antibiotics. It's just really tender to touch. My appetite is the other problem, I don't have one. But I am really trying, hopefully the two milkshakes a day help!!
Saturday, March 19, 2011
Comfy beds and nail polish
Last night when I laid down in bed I thought I was laying on a cloud. This feeling from my hard hospital bed that had a spring digging into my back. I had noticed after they made my bed it looked different. I looked closer and saw they had put on this soft "mattress cover" that was half as thick as the normal mattress. Normally it takes me forever to get comfortable and fall asleep. Last night I laid down and was asleep the fastest I've been here. It was so much more comfortable, although I still woke up a lot during the night. No one came to wake me but they were still loud and I woke up at the usual 7:30. I can't wait to go home and sleep in!!!
I got lots of visitors again today which was really fun. I got to see some people for the first time since I left and they noticed a difference which is really exciting. The chicken was actually good tonight! And I had 2 milkshakes!! I hung out in RT and then I had all the girls nails. I just have to say if medicine doesn't work out I seem to have a promising career as a nail artist. Night nurses seem to be the most fun of the nurses. Some of us congregated around the nurses station and hung out with them. Shriner's has some of the greatest nurses!!
I'm getting pretty tired, "grandma" can't do the late nights like she used to. (The kids nickname for me is grandma, we all have roles in this "family"). Today actually pretty fun!! I'm really looking forward to tomorrow!! :)
I got lots of visitors again today which was really fun. I got to see some people for the first time since I left and they noticed a difference which is really exciting. The chicken was actually good tonight! And I had 2 milkshakes!! I hung out in RT and then I had all the girls nails. I just have to say if medicine doesn't work out I seem to have a promising career as a nail artist. Night nurses seem to be the most fun of the nurses. Some of us congregated around the nurses station and hung out with them. Shriner's has some of the greatest nurses!!
I'm getting pretty tired, "grandma" can't do the late nights like she used to. (The kids nickname for me is grandma, we all have roles in this "family"). Today actually pretty fun!! I'm really looking forward to tomorrow!! :)
Friday, March 18, 2011
People people people
A bit of a crazy day, but it was great! I got my Friday x rays today and am looking forward to seeing them!! Then two of my very close friends from high school came to see me!! That was a lot of fun!! Then I had 2 other visitors, all there at the same time at one point. Then later in the afternoon I had this super cute couple come and see me. One of them wrote me a little story about how i was a super hero with a Halo; I like that idea. The food today seem especially gross!! I don't see how they expect me to gain weight. My friends agreed on how bad it looked. I did go down to Recreational Therapy (RT) for a little bit today. Then this evening another friend came up to visit me. We also had a good time. It was great to be with familiar people all day!! This has by far been the busiest day I've had here. It is also the first day I did not have to take any medicine!! Although my neck is still hurting and it's doing this weird kind of like a spasm thing. I'm not to sure what it is.
I'm pretty tired after my eventful day so I am off to bed!!
I'm pretty tired after my eventful day so I am off to bed!!
Thursday, March 17, 2011
The Circus
Today was not terribly eventful. There was a mini circus today for St Patrick’s Day. I only went because I was forced. The acrobatic stuff was cool, the clowns were not. The shrink kidnapped me again after lunch. We sat outside and had a completely uneventful talk. It felt so good outside! Nice and warn with a nice cool breeze. When I went for my second round of PT they were running behind so I went outside again. I sat there and closed my eyes enjoying the sun. I was super tired all day. They put a new girl in my room yesterday. Her mom spent the night and slept basically next to me. She snored very loudly, I could not sleep. Thankfully she left today. And my neck was really hurting. I tried to take a nap this afternoon sitting up in my chair, since we aren't allowed to lay down during the day, I was unsuccessful. We got Pizza Hut for dinner which was yummy then we played Bingo.
When I was doing my bible reading I came across this passage from Romans 5:
When I was doing my bible reading I came across this passage from Romans 5:
3 We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. 4 And endurance develops strength of character, and character strengthens our confident hope of salvation. 5 And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.
I remember we went over this passage one week last semester at Ignite, our college campus ministry. It reminded me that even on days like today when I'm hurting and feeling homesick God is doing something with me. Right now he is helping strengthen who I am so that my faith in Him can become stronger. Knowing he is using this situation I'm in to help me grow really helps me get through the days.
Fresh air and vampires
I liked yesterday very much! :) I got to wake up, super early of course, and see Ashley laying on the little bed chair thing. That was nice. What was even nicer was when I sat up expecting the normal neck pain, it was missing!!! Every morning when I get up I have to support my neck with my hand to sit up and it's pretty painful. Yesterday it was nothing!!! Ashley's neck rub that night was magic! I could even turn my neck more than usual. I also had some of the best sleep I've gotten here, after our little midnight snuggle chat time! :) Then in morning I had a student nurse all to myself. That's always really fun for me because they are pretty close to my age and its good adult conversation time, which I am definitely lacking here.
Then something great happened!! I got to go outside!! I actually got to leave the hospital!!!!!! We are allowed to get a "pass" and leave for up to 6 hours as long as we stay in traction, except of course when in a vehicle. The Pruemer woman came up and took me away. We went out to eat at a yummy Italian restaurant then browsed about the mall. It was so nice to be outside and get some fresh air. What was super cool was when I was outside I could tell how much better my breathing is. I could tell I had not had that much fresh air in my lungs in years!! It was an amazing feeling!! Then it made me really happy to hear that there is a visual difference in my appearance. I can't really see it too much but I got a picture of my x ray and when I examined it more closely I could see way more of a difference than I could the first time.
Now for the medical stuff of the day. Dr. Little came in and talked to me about my weight. Let’s just say it wasn't very fun getting "scolded" the day before by Dr. Lenke about my weight. So they are going to try some ensure shakes . . . yum!! Hopefully that will work. If not they are going to see about getting an appetite stimulant, but they are hoping it doesn't have to come to that. I also got all of my medicines switched to liquids or chewables. Yes I am 19 and I get to take Flinstones! :) Then they ordered some blood work so they can check my protein and albumin levels and my liver function and who knows what else. Hopefully that comes back all okay. Thankfully I have good veins, so it's easy for them to bleed me dry! I am really glad I don't mind needles.
So yesterday was a really good day. Even with all the movement outside my pain isn't anything more than it usually is, probably about a 2 on the "International Pain Scale". I mention the scale because yesterday I was given the idea to make my own scale, like with pictures of me expressing the faces, I'm so going to do it!! Gives me something to do. Oh and yesterday a certain doctor *wink wink* came in and talked to me just for fun :) I definitely did not mind that! :) Then to top off the day in walks my resident with a very delicious looking shamrock shake from McDonald's. She had mentioned them earlier when we were talking. So after she got off work, a 14+ hour day, she drove to McDonald's to get me a shake and came back to give it to me!!! I can very confidently say I have the best resident!!! :) Oh and the shake, it was very yummy! :)
Then something great happened!! I got to go outside!! I actually got to leave the hospital!!!!!! We are allowed to get a "pass" and leave for up to 6 hours as long as we stay in traction, except of course when in a vehicle. The Pruemer woman came up and took me away. We went out to eat at a yummy Italian restaurant then browsed about the mall. It was so nice to be outside and get some fresh air. What was super cool was when I was outside I could tell how much better my breathing is. I could tell I had not had that much fresh air in my lungs in years!! It was an amazing feeling!! Then it made me really happy to hear that there is a visual difference in my appearance. I can't really see it too much but I got a picture of my x ray and when I examined it more closely I could see way more of a difference than I could the first time.
Now for the medical stuff of the day. Dr. Little came in and talked to me about my weight. Let’s just say it wasn't very fun getting "scolded" the day before by Dr. Lenke about my weight. So they are going to try some ensure shakes . . . yum!! Hopefully that will work. If not they are going to see about getting an appetite stimulant, but they are hoping it doesn't have to come to that. I also got all of my medicines switched to liquids or chewables. Yes I am 19 and I get to take Flinstones! :) Then they ordered some blood work so they can check my protein and albumin levels and my liver function and who knows what else. Hopefully that comes back all okay. Thankfully I have good veins, so it's easy for them to bleed me dry! I am really glad I don't mind needles.
So yesterday was a really good day. Even with all the movement outside my pain isn't anything more than it usually is, probably about a 2 on the "International Pain Scale". I mention the scale because yesterday I was given the idea to make my own scale, like with pictures of me expressing the faces, I'm so going to do it!! Gives me something to do. Oh and yesterday a certain doctor *wink wink* came in and talked to me just for fun :) I definitely did not mind that! :) Then to top off the day in walks my resident with a very delicious looking shamrock shake from McDonald's. She had mentioned them earlier when we were talking. So after she got off work, a 14+ hour day, she drove to McDonald's to get me a shake and came back to give it to me!!! I can very confidently say I have the best resident!!! :) Oh and the shake, it was very yummy! :)
Tuesday, March 15, 2011
Liquid medicine is gross!!
Quite a day! This morning I was not given my pills for fear of choking. By afternoon I was really starting to feel some discomfort. My nurse gave me some liquid Tylenol, yuck!! After my first round of PT I was "kidnapped" by the psychologist. She took me to her office for a talk. I realized a few weeks ago I had to be nice to her, not just because I have to be nice to everyone, because she is on my side with the whole recreational therapy issue. She tells them they need to not be pressuring me to go down there and play. Talking to her wasn't that bad, I guess. When I went down for my second round of PT they were running behind. As I was sitting there waiting I get a phone call from Angela. I found out Ashley was coming to visit me!!! She didn't tell me! Minutes later I see Ashley down at the end of the hall. What a surprise and a pleasant one at that!!
After PT I headed back to my room. Of course I didn't make it. They took me to go get weighed. As I got on the scale I was excited because I knew I had been eating so well and had to have gained weight. Nope! Lost weight! That was discouraging. Then I had to go down to the clinic to see my doctor, like my actual surgeon doctor. I waited forever!! When the doctor finally came in he said my x rays looked great, lots of correction. Then he looked at my back, as well as his 5 or 6 students. That's something I HATE! Sitting there I feel like an animal on display at the zoo when they all walk by my room 20 times and look in and stare at me. Then when they are all yanking up my shirt looking at my back, not so pleasant or comfortable. But I did hear something that made me VERY happy! Dr. Lenke said he could see the difference. Like not just on the x ray but when he looked at me physically. I can't really see much of a difference but I see myself everyday so the change is so gradual. He hasn't seen me in 2 weeks so it makes sense he could see a difference! That is SO exciting for me!! I talked to him about my swallowing problems. He checked me out and said he doesn't think it is a cranial nerve, thank the Lord!!! He said they could reduce of weights when I eat or take pills or even back down on my weights all together. I am very hesitant to go down all together and being unhooked while I swallow pills hasn't made much of a difference, so it looks like it's liquid medicine for me!! I can live with that! He also said I need to work on my weight. Being in traction we are supposed to gain weight, not maintain our weight, and certainly not loose weight. I really thought I had done well. They are going to have the nutritionist come and talk to me. They will probably try a high calorie/ protein shake of something like that.
Overall it was a pretty good day! I'm really excited to have Ashley here with me tonight! Last night I skyped with Rachel. I got to see Marley and Michael! I can't wait to be home!!
I have been here 3 weeks today!! That seems weird. It feels like I have been here much longer.
Well it's off to bed for me. I get to go outside for the first time in 3 weeks tomorrow!! I'm pretty excited!! :)
After PT I headed back to my room. Of course I didn't make it. They took me to go get weighed. As I got on the scale I was excited because I knew I had been eating so well and had to have gained weight. Nope! Lost weight! That was discouraging. Then I had to go down to the clinic to see my doctor, like my actual surgeon doctor. I waited forever!! When the doctor finally came in he said my x rays looked great, lots of correction. Then he looked at my back, as well as his 5 or 6 students. That's something I HATE! Sitting there I feel like an animal on display at the zoo when they all walk by my room 20 times and look in and stare at me. Then when they are all yanking up my shirt looking at my back, not so pleasant or comfortable. But I did hear something that made me VERY happy! Dr. Lenke said he could see the difference. Like not just on the x ray but when he looked at me physically. I can't really see much of a difference but I see myself everyday so the change is so gradual. He hasn't seen me in 2 weeks so it makes sense he could see a difference! That is SO exciting for me!! I talked to him about my swallowing problems. He checked me out and said he doesn't think it is a cranial nerve, thank the Lord!!! He said they could reduce of weights when I eat or take pills or even back down on my weights all together. I am very hesitant to go down all together and being unhooked while I swallow pills hasn't made much of a difference, so it looks like it's liquid medicine for me!! I can live with that! He also said I need to work on my weight. Being in traction we are supposed to gain weight, not maintain our weight, and certainly not loose weight. I really thought I had done well. They are going to have the nutritionist come and talk to me. They will probably try a high calorie/ protein shake of something like that.
Overall it was a pretty good day! I'm really excited to have Ashley here with me tonight! Last night I skyped with Rachel. I got to see Marley and Michael! I can't wait to be home!!
I have been here 3 weeks today!! That seems weird. It feels like I have been here much longer.
Well it's off to bed for me. I get to go outside for the first time in 3 weeks tomorrow!! I'm pretty excited!! :)
Catching up till now
With the traction weights they started me at 3 pounds. After that I got an additional 2 pounds every morning and one pound in the evening till I hit 20 pounds. I stayed there for 5 days and then went up one pound a day to 30 pounds where I stopped. My first full day in Halo traction was super hard. My head hurt so badly!! Angela had spent the first night with me and left late that morning. Between nauseous episodes I was able to take a shower and they taught me how to do pin care. That evening a good friend of Angela’s good friend came to see me, Ellen. She was super sweet!!
That night was the first night I slept in traction, I was at 5 pounds. I had an awful night! I cried and cried! My nurse was really sweet. When she gave me my pain medicine (Loritab) she unhooked me from my traction and said she’d come hook me up once I fell asleep.
That next day I stared my physical therapy. I started walking on the treadmill, still hooked to traction, at 5 minutes. We go to PT twice a day and they increased my time by 5 minutes every walk till I was up to 30 minutes. Then they started to increase speed. I was amazed; I never got short of breath!
Day 4 I got some bad news. My resident came in and told my surgery dates had been moved back. They were moved from April 14th and 26th to April 21st and May 5th. When she told me that it took everything for me to hold back the tears, I was so upset!! At this point I was really miserable! All I wanted was to go home!!
My first weekend Angela came up and spent Saturday night. She helped me wash my hair, which is NOT easy to do with a Halo. I almost passed out in the shower. I think it was a combination of my stomach problems and all the pain medicine and standing up too long. It was so good to have her there with me. Sunday when she left was hard. I quickly began to realize I was not expecting it to be this hard!
It took me about a week for the headaches to go away and to get off the hard drugs. After the headaches came the neck pain. But what should I expect, I mean I’m literally being stretched!! They gave me this “rice neck pillow wrap” they heat which helps a bit with the neck pain. Eating was another problem. I had no appetite at all!! Everyone kept telling me I had to eat. I knew that, I just couldn’t do it. Especially with the food being as gross as it was! But again within about a week I started to get my appetite back and I was figuring out what to order and what not to order.
Then the eve of March 1st I got some more bad news. They had discovered a hair stuck in one of my pins sites. I don’t understand how that happened. They shaved the areas. I woke up at Children’s with chucks of my hair in the bed. I started running my hands through my hair and more was coming out. In a still drugged state I almost started to cry because I thought my hair was falling out. Anyway, the doctor came in to tell me in the morning they were going to take out the pin, remove the hair, and replace the pin all while I was awake! I was terrified!!! I called Angela of course. That was when our motto, “do it scared” came in very handy.
The whole thing was very interesting. They gave me 2 Percocet an hour before. The tree painted on my ceiling started to move, I was very high. When the doctor took out my pin I thought that hurt. Then when she was digging around for the hair and trimming the hairs around the area I thought that really hurt. Then when she put that pin back in I have never experienced pain like that in my life!!! It hurt SO badly. 1 to 10 scale . . . about a 10,000!!! It was the most painful thing I ever experienced! Thankfully the pain was very short. As the pin was being tightened it felt like my whole head was exploding from the inside!! Afterwards I got to rest out of traction for 2 hours, that was great. Then my nurse came, woke me up, and made me get in the shower. Of course the drugs hadn’t worn off so I almost passed out in the shower for the second time! Very scary feeling! Of course the person to come in was my least favorite person and she acted like I was overreacting. Really lady? I almost hit the floor.
It took about 2 weeks for me to be able to get some decent sleep. It was hard at first with everyone coming in through the night to give me medicine and check on me. After that stopped it was the issue of getting comfortable. That was a big challenge for me, a very wild sleeper. As soon as a way was discovered for me to sleep on my side my neck was at the point where it made it too painful for me to turn at night. So now I’m left sleeping on my back and occasionally turning to one side. But at this point I just lay on my pins and it doesn’t bother me like it did at first. Thankfully the back of the Halo is open so sleeping on my back is a bit easier.
The 13th was a very exciting day! I had no idea it would be when I woke up. First of all my doctor found it too painful to see me play chutes and ladders because there was nothing else to do, so she went out and bought me origami stuff. What doctor does that?? Then came the huge thing! My nurse came in and asked me if I wanted to see my x rays. Of course I said yes. I went into the nurses’ station where my doctor had them pulled up. At first glance I couldn’t see much difference, then I saw the numbers. I asked if they were for real. My doctor looked up at me smiling and said yes. My x rays from the week before showed my 123 degree curve. The x ray from a week later showed my 89 degree curve!!!!! I almost cried when I saw it! That is a HUGE improvement! I could tell by the way they were acting they were surprised!! God is so good!! Seeing those x rays makes this all seem easier!
Then yesterday there was some new drama, not the good kind. In the morning when I was swallowing my pills the first one I attempted to swallow got stuck. It was weird, it wasn’t like I was choking, it was stuck in the side of my throat. I started to panic. It hurt really badly. I tried coughing but it didn’t help. Between the pain and the fear I had tears running down my face. I started drinking, a lot, trying to get it to go down. My nurse yelled for someone to call a code something and get the doctor up there right away! That was scary!! As I was drinking finally it came up. I didn’t try again till lunch and they went down fine. I had been having a bit of trouble swallowing but attributed it to my neck position in the traction. I talked to the doctor later who wanted to see if it got worse. Then before bed I tried to take my medicine, it happened again. It was pretty much just as scary. This morning I was not given any pills. The nurses are supposed to wait till the doctor figures out what to do. I’m still hoping it’s just the position. If not it’s being caused by one of the pins. They are inserted into the cranial nerves which can potentially cause problems. The doctor is going to come in later today. I’m pretty anxious.
So that’s pretty much all the good details up to now. I probably should have started this sooner. All my posts will not be this long now that the important things are caught up.
I’ve got to get headed to PT. I can't wait till I recover and can start running!!!
Monday, March 14, 2011
Halo Day
3:00 am Tuesday February 22nd, 2011. I wake up, after having one hour of sleep, its show time!! The day before was an awesome day! I got to have lunch with one of my best friends then I got to spend the afternoon with my amazing sister Rachel, then I got to spend the night with my other sweet sister Ashley. Of course in there was the very unfun act of packing for 3 months! It was a good day. Rachel and I hung out at home and watched movies, something I miss so much now! Then I went with Ashley on a midnight Wal-Mart run. I could not eat or drink after midnight of course. The last thing I ate I was dill pickles and the last thing I drank was a sprite, right up to midnight.
So at 3:00 I started bringing all my stuff upstairs. I had SO much stuff, thankfully Jim helped me! At 3:30 it was goodbye Cape Girardeau. Leaving was not easy. The car ride didn’t seem as long as usual. We both expressed our thought that this whole experience might be God preparing me to go 6 hours away to UMKC for school this fall. I had my interview beginning of February, in the blizzard, and they mail out admission decisions April 1st so we are still waiting to see. I’m not quite sure what God has planned for me but whatever it is I know it will be great!!
When we got to Children’s Hospital we went up to same day surgery. They quickly took me back and had me get into a gown. I laid in bed waiting over an hour before things got moving. They were really nice when they did my IV. They put a numbing patch over the area first. I had the option to do it that way or go into the OR get some laughing gas and then get my IV, but I did the IV while I was in the room and they were able to give me a “cocktail” through my IV to calm me down while I waited. Surprisingly I wasn’t too freaked out. I kept thinking leading up to that day the fear would set in and I would freak out but I never really did. That shows me how much more I have learned to trust God!!
When they wheeled me into the OR there were so many people there, it felt so weird!! Someone asked me if I could tell they had given me any medicine. I said I felt sleepy, but I felt that way when I got there. They put some medicine in my IV and next thing I knew I was waking up to hearing Angela’s sweet voice. It took me a few minutes to open my eyes. Right away I felt up at my head, yep, the Halo was on. It was really weird because when I looked up I could see it, that’s something I’ve gotten used to. Over the next hour they gradually raised the head of my bed so I could sit up. I was surprised I didn’t feel that bad. They gave me some crackers, vanilla wafers, and sprite.
About noon they discharged me. I got in the car with Angela and off to Shriners Hospital we went. The whole ride I felt fine. We stopped to get some food and I was so sleepy. I put my seat back and slept while Angela ate. When we started driving again I wasn’t feeling too good. One street before we needed to turn I told Angela to pull over. I opened the door, stuck my head out, and threw up! I felt awful.
When we got there we had to wait what felt like forever for someone to take me to my room. I immediately crawled in bed. I spent the rest of the day trying to sleep, but constantly sitting up with my head in a bucket. One sip of sprite, head in the bucket. One cheese-it, head in the bucket. It was awful. Lots of different people came in asking me questions. It was a very difficult day. During the night they kept waking me to take vitals, do neuro checks, and give me medicine. Since that night I have not slept through the nigh once!!
That is a day I do not wish to repeat but I know it was necessary on my journey to healing!
So at 3:00 I started bringing all my stuff upstairs. I had SO much stuff, thankfully Jim helped me! At 3:30 it was goodbye Cape Girardeau. Leaving was not easy. The car ride didn’t seem as long as usual. We both expressed our thought that this whole experience might be God preparing me to go 6 hours away to UMKC for school this fall. I had my interview beginning of February, in the blizzard, and they mail out admission decisions April 1st so we are still waiting to see. I’m not quite sure what God has planned for me but whatever it is I know it will be great!!
When we got to Children’s Hospital we went up to same day surgery. They quickly took me back and had me get into a gown. I laid in bed waiting over an hour before things got moving. They were really nice when they did my IV. They put a numbing patch over the area first. I had the option to do it that way or go into the OR get some laughing gas and then get my IV, but I did the IV while I was in the room and they were able to give me a “cocktail” through my IV to calm me down while I waited. Surprisingly I wasn’t too freaked out. I kept thinking leading up to that day the fear would set in and I would freak out but I never really did. That shows me how much more I have learned to trust God!!
When they wheeled me into the OR there were so many people there, it felt so weird!! Someone asked me if I could tell they had given me any medicine. I said I felt sleepy, but I felt that way when I got there. They put some medicine in my IV and next thing I knew I was waking up to hearing Angela’s sweet voice. It took me a few minutes to open my eyes. Right away I felt up at my head, yep, the Halo was on. It was really weird because when I looked up I could see it, that’s something I’ve gotten used to. Over the next hour they gradually raised the head of my bed so I could sit up. I was surprised I didn’t feel that bad. They gave me some crackers, vanilla wafers, and sprite.
About noon they discharged me. I got in the car with Angela and off to Shriners Hospital we went. The whole ride I felt fine. We stopped to get some food and I was so sleepy. I put my seat back and slept while Angela ate. When we started driving again I wasn’t feeling too good. One street before we needed to turn I told Angela to pull over. I opened the door, stuck my head out, and threw up! I felt awful.
When we got there we had to wait what felt like forever for someone to take me to my room. I immediately crawled in bed. I spent the rest of the day trying to sleep, but constantly sitting up with my head in a bucket. One sip of sprite, head in the bucket. One cheese-it, head in the bucket. It was awful. Lots of different people came in asking me questions. It was a very difficult day. During the night they kept waking me to take vitals, do neuro checks, and give me medicine. Since that night I have not slept through the nigh once!!
That is a day I do not wish to repeat but I know it was necessary on my journey to healing!
Leading up to the hospital
First blog post, what to say. . . First off I'm starting this blog for a few reasons; a way for my friends and family to stay updated, something for people to look at who are considering this surgery, and as something for me to look back at later and be able to see Gods faithfulness through. Oh and because this place is so boring I think I may loose my mind sometimes!!
So from the beginning, when I was 12 years old a friends mom noticed something different about my back when we were swimming. By the time I went to the doctor when I was 13 I was told I needed surgery. My first x rays showed I had a 90 degree curve. My family situation was not ideal for me to have surgery, and I was absolutely terrified!!! So the decision was made not to have it. As I grew so did my curve, it was so slow and gradual I didn't notice it. In high school it started getting worse. By worse I mean it started compressing my lung, I didn't need a doctor to tell me that, I could feel it. Still in my mind surgery was not an option, it wouldn't help anything.
The summer before my senior year my world fell apart. My mother, my only family, died. I was 17. Lots of complicated things happened after that, including a "fun" car accident, but through all that something amazing happened. . . God gave me a family!! That in itself is a crazy story that goes to show God's goodness and faithfulness.
Jim and Angela are two incredible people! I didn't know them at all before my mother went into the hospital. Soon after moving in with them and their family Angela quickly learned how to "convince" me to do things (it also helped that she was ALWAYS right)! She got me to promise to see a doctor about my back. That was not an easy thing for me. Once I turned 18 that winter it was doctor time.
The first specialist I saw was in St. Louis. When he out my x rays up my eyes started to water, I almost lost it! I could see my curve had gotten so much worse! Seeing that x ray was all I needed; I knew something had to happen. That doctor, however, was not going to touch me. He instead referred me to Dr. Lenke, also in St. Louis. So I got an appointment to see him in August.
In the meantime I went to prom, graduated high school, and registered for college, no big deal. My appointment in August was incredibly difficult. When we finally sat down with the doctor all I heard was 6 weeks of traction and 2 surgeries. After that my mind shut down. As we were leaving the hospital all I kept saying was no. I told Angela over and over again I couldn't do it, that obviously didn't last. On the way home Angela had a thought. i had wanted to apply to the 6 year medical program at UMKC. I had been misinformed about the application deadline and had not been able to apply the previous year. Now that I would need to take the year off for surgery I could reapply. A little bit of good news. We had to wait a while for my surgery dates. Because my insurance was going to cut off when I turned 19 we needed it to be that year. That, however, did not happen. The dates were set for April!! That whole thing started a process in which Angela battled numerous Medicaid workers and government officials. I was never made aware of the entire process she went through to get my insurance extended. But I remember everyone was sitting in the living room one day praying and we prayed that we would know it was God providing. That prayer was answered!
So there was lots of anticipation leading up to February when I would go into the hospital to begin Halo traction. I had to buy lots of sweats and big shirts that i could fit over my head with the Halo on. I also had to get together lots of stuff to keep me busy.
Well that's about all the back story needed. Now everyone is caught up to right before I entered the hospital.
I should go and eat some delicious hospital food now. HA!!
Plenty more to come!!
So from the beginning, when I was 12 years old a friends mom noticed something different about my back when we were swimming. By the time I went to the doctor when I was 13 I was told I needed surgery. My first x rays showed I had a 90 degree curve. My family situation was not ideal for me to have surgery, and I was absolutely terrified!!! So the decision was made not to have it. As I grew so did my curve, it was so slow and gradual I didn't notice it. In high school it started getting worse. By worse I mean it started compressing my lung, I didn't need a doctor to tell me that, I could feel it. Still in my mind surgery was not an option, it wouldn't help anything.
The summer before my senior year my world fell apart. My mother, my only family, died. I was 17. Lots of complicated things happened after that, including a "fun" car accident, but through all that something amazing happened. . . God gave me a family!! That in itself is a crazy story that goes to show God's goodness and faithfulness.
Jim and Angela are two incredible people! I didn't know them at all before my mother went into the hospital. Soon after moving in with them and their family Angela quickly learned how to "convince" me to do things (it also helped that she was ALWAYS right)! She got me to promise to see a doctor about my back. That was not an easy thing for me. Once I turned 18 that winter it was doctor time.
The first specialist I saw was in St. Louis. When he out my x rays up my eyes started to water, I almost lost it! I could see my curve had gotten so much worse! Seeing that x ray was all I needed; I knew something had to happen. That doctor, however, was not going to touch me. He instead referred me to Dr. Lenke, also in St. Louis. So I got an appointment to see him in August.
In the meantime I went to prom, graduated high school, and registered for college, no big deal. My appointment in August was incredibly difficult. When we finally sat down with the doctor all I heard was 6 weeks of traction and 2 surgeries. After that my mind shut down. As we were leaving the hospital all I kept saying was no. I told Angela over and over again I couldn't do it, that obviously didn't last. On the way home Angela had a thought. i had wanted to apply to the 6 year medical program at UMKC. I had been misinformed about the application deadline and had not been able to apply the previous year. Now that I would need to take the year off for surgery I could reapply. A little bit of good news. We had to wait a while for my surgery dates. Because my insurance was going to cut off when I turned 19 we needed it to be that year. That, however, did not happen. The dates were set for April!! That whole thing started a process in which Angela battled numerous Medicaid workers and government officials. I was never made aware of the entire process she went through to get my insurance extended. But I remember everyone was sitting in the living room one day praying and we prayed that we would know it was God providing. That prayer was answered!
So there was lots of anticipation leading up to February when I would go into the hospital to begin Halo traction. I had to buy lots of sweats and big shirts that i could fit over my head with the Halo on. I also had to get together lots of stuff to keep me busy.
Well that's about all the back story needed. Now everyone is caught up to right before I entered the hospital.
I should go and eat some delicious hospital food now. HA!!
Plenty more to come!!
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