Sunday, April 26, 2009
Sunday I went back to church for the first time. It was overwhelming to see everyone again after what seemed to be so long. I had really missed my church family. So it was just awesome to be back in the pew and back with a group of people who loved God and weren't afraid to show it.
Monday and Tuesday were very similar in many ways and just were filled with doctors appointments! It was absolutely insane and I was still walking with my walker. I couldn't get around very well so the traveling was quite intense.
Wednesday I went to school for the first time in 4 weeks. What an awesome thing to be back for the day, I only went to school for a half day to just get back into the mix of things for a little while. It was definitely an answer to prayer and it was so incredible to be back with people my own age experiencing life.
Wednesday night my life shifted, it shifted so heavily that I don't think my life will ever be the same from this day forward. I really can't share all of this night or the things that followed because I feel the news is cheapened by the sharing on my blog with my family and friends that are closest to me.
Thursday night I went to my typical GC and we really had an awesome time. I encountered the presence of the holy spirit and God a lot this week and it was something that is just indescribable. I do believe that if I could wish for one thing for everyone in my life it would be the spiritual encounters and the amazing feeling that fills you when you have them. It's incredible. Seriously incredible.
Friday was another day at school and filled with getting back into the swing of things. After school I had a doctors appointment and also had a Lyme Walk meeting. :) It was awesome.
I will continue to update more. I am doing really well and when I am ready to share get ready to hold your seat! Thank you so incredibly much for all of your prayers. I appreciate it so very much. Please continue to pray for my family and the understanding of everything in complete and whole entirety as I go on.
Friday, April 17, 2009
Thursday, April 16, 2009
I am baffled by the amount of parents that can leave small children just 2 and 3 months old. I try my best not to judge them but at 2 am when none of them have gotten any sleep and screaming is all that can be heard, my heart breaks for these small babies. I hope this is not a memory- sometimes I wonder if people really do remember their baby years.
I wanted to focus in on some things that have happened while I have been here, moments of happiness and things that have been good. I have gotten a lot of time to reflect which has been wonderful because that's all I could do. I slept all day yesterday and that I am sure helped with the progress of getting well. However one thing I did get to do was play a gift-giver to a small baby. A little girl was in here and we got to give her a blanket someone had made. It was a special moment for me because I know the comfort my quilt has brought me on so many nights. It hasn't left my side. So for me to give this small little girl an afghan it was a pretty big deal to me. I was really excited and I felt so special covering her small 5 pound body. She was asleep and it felt so serene.
I thought long and hard about this moment and I decided I wanted to make the difference in the lives of sick teens in the hospital. Teenagers that are sick and are from the ages of 14-18 or sometimes older that do not get these precious blankets anymore because they are too old and the supply is not abundant at the rural hospitals. I need your help figuring out what should be made. Right now all I can think is something imperfect- with a special flaw that provides comfort. The item has to be handmade and new, and I want them all to be kind of similar and I would be willing to write stories for them- or the creator could write a story special for their creation. However I don't know just what these things could be and I want some feedback. Please offer me some feedback on what you think would be just right for a teenage girl or boy who is stuck in the hospital even just for a few days.
Wednesday, April 15, 2009
Tuesday, April 14, 2009
I have slept, I have stayed up late, I have gotten sick.
I am sick of being here I am doing all I can to leave.
I have had almost a new IV site daily and learning tons of new things about hygiene.
I hope to be leaving soon.
Monday, April 13, 2009
I have been here three weeks as of tomorrow. I don't think anyone in my family needs to be reminded. I am gaining strength and walking and finding ways to pass the time. I am struggling to understand a plan but I know I am part of one which brings me peace. I am going to compile a video soon, a video of what is going on.
Right now I am thinking about graduation. That's it. Well, maybe some other things but they're a surprise!
Saturday, April 11, 2009
In High School football seeing the good despite every bad action. These teens find love and support from complete strangers.
A young teenage girl finds a relationship and support from an ordinary woman who quilts. Sending a prayer quilt through her youth pastor her life has been changed and her quilt stays by her side. Through vomit and cheer this girl looks to God now instead of fear.
I am so glad that I got this blanket this quilt has changed my life. I don't what gives me more peace receiving a note from the woman who still prays for me or the comfort of feeling God's presence when I wrap up in the quilt.
Even youths shall faint and be weary, and young men shall fall exhausted;
but they who wait for the Lord shall renew their strength; they shall
mount up with wings like eagles; they shall run and not be weary;
they shall walk and not faint.
- Isaiah 40:30-31
Thursday, April 9, 2009
I really wish that people could know what it was like to be in the hospital for days and have to say to the nurse, I need a commode at the age of 18, 17, 16, 15.. Or I cannot walk can you please help me? Or how about not showering for MONTHS because you have had to become a creative thinker due to the fact your IV is in your chest. Hm. Yeah so I am being kind of blunt because I feel like people have no problem being very blunt with me.
If you didn't wonder. You can stop reading now.
I guess I don't really feel like a heart is an organ I have anymore maybe a brain but not a heart because it seems as though my dignity has been stripped from me and the smallest things are setting me off. I have not been getting good sleep and I am really stressed. I have handed people I trust thoughts and they have butchered them up. I guess I can't be hopeful with things I wanted to be. Some of my friends are thinking about relationships I don't even want to do that right now, after being broken up with and having the person that broke up with me then continue to date someone else and then still feel they needed to consult me for advice about their relationship... I mean it would be nice to be hopeful about dating but I honestly don't see a whole heck of a lot of teenage guys looking for a sick girlfriend who might not be able to walk some of the time.
Not only has it effected that it has effected almost all of my senior year. Hey girls, do you want to go to senior prom? No problem! You can go through photos on facebook and through friends memories and if they're grumpy after prom and extremely tired that's fine! You get to see that as they visit you. That's when you fit in their schedule. How about a senior trip? If you had that in mind no problem because it isn't going to happen because you are sick and it's dangerous and you really shouldn't go without your parents. So with distance considered, no way. How about yearbook, the thing you busted your butt on last year? Do you think you might get in because you helped and you accidentally missed a deadline by A LOT. No that is your fault and that's fine because we're all equal coming out of the high school but when you hear that someone else also bought an ad the same day- No worries! You let that run off like sweat off your back.
So after all of the "normal" things that are going on you try to do some good things... Right? Well cool. Good for you! Get ready to have people breathe down your neck and any little thing that may be seen as amiss you get blamed for. You get e-mails from people and believe me EVERYTHING gets back to you. Even if the e-mail was from my friend's cousin's friend's aunt, that noticed something- you see it, fix it and still hear grief. It's not okay that you're human. You're 18 and you have everything to hold for it. People are breathing down your neck and they feel that treating you like shit is okay. Backing out on things or making it seem extremely difficult is ALRIGHT. You have to pick up these extremely ridiculous puzzles and make them all look good smile, laugh a little and make everyone seem as though it's dandy! Why? Because that's what the world makes it seem like.
My cousin wrote me and said tell the person who felt depressed about your sickness we would gladly trade places so I could be depressed about YOUR sickness. Well isn't that the truth! I guess the world has made it seem that it's not okay to be feeling upset and no one should ever put another kid out or for this matter anyone. I am sorry if you have been a victim of this horrible thing that is really called venting. I am sorry if you have seen me when I have been rude and upset and ready to rip my hair out. I am sorry that you don't see the other 350 days that I am in a semi-decent mood. I am sorry that you don't get to deal with me then. I am sorry that I have been a jerk. I am sorry things are unfair to everyone else. I think it's completely fair that I am sick. NOT I don't know when people thought life should be fair. But it's not. Okay? I get it. Don't keep shoving crap in my face.
K. I am done. I will not be posting any more venting posts this hospital stay. But if you wondered. There it is. If you didn't wonder. Sorry.
Wednesday, April 8, 2009
I don't even feel like posting about this right now but here we go. They have moved my room again and I am thinking that no one should bring anything because I move almost 2-3 times a week. I am on my 15th day in the hospital and I have a Lyme Walk I feel like I am losing it with. I have a senior year that is a train wreck and I had surgery on Monday. So many have asked about the port- We are supposed to be waiting 6-12 weeks to get the new port if I need one... Right? WELL! Just my luck I got a blood clot in my arm today in my picc line so that was removed after my arm swelled up. I have been told I am depressing. That's super and fine but please don't keep reading if that's what you don't want to find.
I am not really enjoying this at all and right now creativity is lacking. So bare with me. I have a periphal IV in my arm now and they're doing that for a few days. My doctor is now currently out of town, I don't know when he will be back hopefully tomorrow but we are consulting with my surgeon and we're going to see what the options are now. We have exhausted plans A-E just about now and who knows what they're going to do.
If I could just ask for prayer for my family and I right now I have been really stressed and it's reflecting my mood greatly. I am really stressed out and this really isn't the year I was expecting, even the nurses are pretty ready for me to go home. I don't really know what to think.
I will update when I know more.
Monday, April 6, 2009
A year ago a lot of things were going on at this time of the year but also they were hitting me at tons of different angles. Through my friends, through my family- twinges of pain and trying to understand. I want you to see some excerpts of this- going from October of 2007 to recent months to around exactly a year ago.
We had practice that night. She was sick and I was worried. She was getting worse and I couldn’t focus on what I was supposed to be doing. I don’t think the fact that the night was extremely stressful helped the situation at all…
Rehearsal ended. She was in a daze.
We got to the area in front of the senior cafeteria. I told her she needed to sit down, but instead she was leaning on me and all of a sudden all of her weight was on me.
I kept saying, “Vic… Victoria…”
She started to shake… She was having a seizure.
Oh, my God… Oh shit… Oh SHIT!... Get her down on the ground… be careful – don’t let her slam her head on the ground… Holy shit…
My mom’s yelling at me from across the cafeteria, “What’s going on?! What are you doing?!”
With wide eyes and through clenched teeth I told her, “She’s having a seizure!... Somebody needs to call an ambulance…”
I’d never felt so useless in my life. For a while I was kneeling next to her, stroking her hair or rubbing her arms. What else could I do? Once one of the band moms came over to check some things on her, I started pacing. I felt useless. There was nothing else I could do.
Hang in there, Vic.
You can do this.
I’m here for you.
I’d stop and look on – this was too real. Never had I imagined…
Band moms were coming over and asking me if I was okay. They kept reassuring me: She’ll be okay, you know. They were worried about me as well.
I kept pacing. I just kept nodding my head.
Well I KNOW she’ll be okay – but at the moment, she’s kinda NOT.
YES, I’m okay… I think…
But I felt tears welling up, threatening to escape.
You can’t cry. You can be strong for this. Everything will be okay. It may not
And I didn’t… at least until she left in the ambulance. Once she left, I guess no one could believe how calm I was through the whole thing. While me and my mom started walking toward the car, I couldn’t do anything else. It call came out. I was such a wreck that night. I cried. A lot.
At that point, I didn’t need a message sent to me the next day telling me what happened the night before. I was there. I was right there.
Photos are always intense. I have not done a photo slide show in awhile but as we reached a year of my port being placed and a year of my gall bladder removed some photos stood out looking through the file.
Sometimes silence is golden, other times silence can be used as torture. The silence I think of is not silence at all but the whooshing and whirring of machines working their job. Sometimes people say that silence can be peaceful but I almost wish some noise tonight.
These last few years have been extremely tough on you and the whole family as we try to understand what this horrible disease is and what I have in store for me. You've been a simply amazing mother, friend, provider, and spouse to Megan, dad and I. I am touched by how much you care about me and how selfless you are when it comes to the care you have to provide for me or get for me.
As I grow older I not only learn more about you and your character but I am also able to discern more about life and myself in general. You have absolute acceptance of me and you're one of the few that are able to look past the many complications that this disease has handed me. You have also shown me what it takes to love a family unconditionally and how selfless a mother must be when others are in need. Whether it is towards myself or another person that you have come in contact with. Over time you have taught me that giving to others is the best gift of all and that you shouldn’t condemn others of their shortcomings but listen to them and help them become a better person.
Thank you foremost for not only being my mother but also for the people that you have brought into my life through having you in my life. You have most definitely blessed my life in an immeasurable way and helped mold me to become the person I am today. Without you blessing my life I know that I would not be nearly as good of a person and I would probably be less confident and I wouldn’t be able to tolerate as much. When people say I am a good person I have a few people to thank for getting me to the place I am today and for giving me the insight and knowledge that I have and you are most definitely one of those people. I think the thing that I admire most about you is your ability to offer kindness to every person that walks into your life and that you can go out of your way to help someone even if you’re running late or have other plans to do that day. I will never forget the day that you stopped to take a lady from church to the mall from the bank even though we ourselves were running late to a doctor’s appointment. Your selfless approach on life is definitely something that I feel you should be noticed for and should be given acknowledgement for. Thank you so much for gracing my life with your presence and loving me unconditionally.
I want to say I love you. I can only hope that I have imparted a fraction of the love, warmth and camaraderie you have extended to me. A mere “thank you” doesn’t cut it, but thank you anyway.
Almost exactly a year ago to date:
Today I think back to these moments I am amazed with how far I have come. I am faced with new things new thoughts and new obstacles but nothing too hard to overcome. I am looking head on to a moving train getting ready to step aside and hop on. Not let this ride pass me by because sometimes baby you gotta do the locomotion! C'mon baby do the loco-motion. I don't think you'll like it, we just have to chance it. I don't want my baby sister doin' it with ease... Getting of the ride now. So C'mon C'mon lets swing these tests and rock these tracks and see if we can't get home with ease. C'mon C'mon the ride will stop now.
Sunday, April 5, 2009
Tuesday, March 24th I went to the ER with bluish hands and shaking. I felt as though I could not get warm and things were well on their way of heading south. That evening I had a small seizure upon getting to triage after waiting around 2 hours to get to triage. That evening we could not find our thermometer so we had them take my temperature upon arrival to the hospital and it was around 98 by the time we reached triage it had raised significantly. I cannot give an exact number. It was also this night I had a scare with pneumonia in my left lung. There was significant shadowing on my left lung that caused them to believe there was fluid. I also had a fever and I was very drowsy. Two doctors felt I had pneumonia. I became very drowsy in the ER and ended up getting tired enough to sleep and not arouse to anyone even through multiple blood draws and blood cultures. I remember nothing after I fell asleep. I was wiped out. They decided to admit me after taking the blood cultures and since I was not awake.
That week from the 24th to date I have had three more blood cultures. The original blood culture was felt to be contaminated but was positive with coagulase negative staphylococcus and Granulicatella Adiacens both bacterium were growing upon the reading of my cultures. It was a collaborative decision between a infectious disease doctor as well as my PCP to start Vacomycin by Wednesday or Thursday. By the weekend of the 28th, our prom weekend they had decided to discontinue Rocephine or Ceftriaxone. Due to the continuation of fevers they wanted to be sure that they were not drug induced fevers. This confused me until I understood what was going on a little more. The infectious disease doctor consulted with us again to explain what his views on everything were and 1 in 4 patients that he has seen are able to get over this within the 2 week course of Vacomycin. In some cases however, the patient has not been able to get over this hump in that case the port, of which they have now figured to be infected due to certain cultures that have been taken- may not be able to be brought back to sterile. In these cases it results in removal of the port.
My Primary Care Physician stated he felt that my port would have to be removed due to the circumstances and explaining things such as the immune complex along with the fact that plastic has no fighter cells to get rid of infection upon settling in a device such as my port. When my Primary Care Physician met with us I asked many questions including questions about the bacteria and why I would have gotten the infection. He considered this and said among many things it could just be because of all of the pokes that I had received or just a simple cut somewhere. It is very easy to get bacteria into the bloodstream. With all things considering and having my port for a year we were told the risks and benefits of removing the port immediately (April 1st). I asked him to wait until Monday- so we could discuss the thoughts as well as wait for the latest blood culture to see if there were any changes. He said he felt this was a good decision and he would support it. Since I have continued to have high fevers and extreme chills mostly at night and sometimes during the day. We feel a persistent infection is in my port and it will have to be removed. He said chances are the infection is still there. Where the heart has come in, is that the port is in my chest and near my heart. In some cases a heart valve can become infected so they have ordered echo cardiograms to check out my chest cavity to make sure we're covering all of our bases.
What does all of this basically mean? I will need two surgeries that will remove the infected port and insert a new port. Once this happens I should be back onto my road with recovery.
Along this road of sickness I have lost my ability to walk. The sensation in my legs is slowly being lost and my feet are not working properly. I have been working with physical therapy and I believe that I will be okay it is just going to take some working out to get them back to normal. I don't understand what goes on with my legs but I do believe they are always the first to go. I have also experienced some incontinence which is both embarrassing and quite stressful for me. However, this is just a stage in the grand scheme of things and I believe it will be fine.
As far as school- it honestly hasn't crossed my mind until today. I can honestly say I have not picked up my physics book and have not tried to sleep with my American History book to process the information through osmosis. That is for a later date. I have been trying to keep in touch with the teachers I currently have especially my physics teacher because I am not so sure it will be easy to catch back up in that class. However he seems to be confident that he will be able to help me. College is another thought and I have considered taking a year off because with the financial burden and the physical burden I am quite weary of setting foot in that scene if I cannot afford it in any way shape or form anyways. It breaks my heart to consider that yet it seems to be reality at the moment.
I also wanted to go through some basic vocabulary right now that could through some for a ringer:
Port: A port is a small device usually made of silicone or plastic that is surgically implanted beneath the skins surface and connected to an artery that leads directly to your heart.
PCP: Primary Care Physician
Blood Culture: A blood test that is done when serious infection is suspected. It can identify bacteria or fungi that are spreading through the bloodstream. (http://www.thegooddoctor1.com/glossary.html#B)
Coagulase Negative Staphylococcus: Basically is a bacteria in the bloodstream that carries many anti-bodies. It can become severe but is not deadly and is carried within every-one's skin, just like everything- too much of this can be a bad thing.
Graulicatella Adiacens: Also a bacteria within the bloodstream common among prothstetics such as my port. This bacteria is commonly associated with things such as ports or any other sort of prothstetic.
Rocephine (Ceftriaxone) and Vacomycin: Both antibiotics used to treat infection. We have been using Rocephine for the Lyme disease both are IV antibiotics and have been being administered through my port.
If you have any questions please direct them to me I will attempt to answer them. I do not understand everything that is going on at this moment but this is what I understand.
As many of you know tomorrow is Sunday and is church. Next weekend is Easter and I would really love to be at the service and worship with everyone it is looking as though it could be cutting it close getting this all to fit in one week and being healthy enough to make it to church by Easter. This is something I will cross next weekend. However, my admissions counselor shared this song saying it reminded her of my situation. As I listened to it again, it really hit me. He really has never let go of me through the calm and through the storm... The song is You Never Let Go.
There will be an end to these troubles... I can see a light that is commin'!
God's timing is perfect. This is not his disease but I am his work.
(Please ignore the grammar and if it doesn't make sense at times- I am very tired but I wanted to update with the information I had.)
Friday, April 3, 2009
If you would like to share exact get well wishes with me please go to http://www.arnothealth.org/index.asp?pageId=165 Room number 3B 17. They are little e-cards that get delivered everyday to the room.
We are continuing to wait. The final news on everything will be this Monday when we have the results of the cultures. My Primary Care does believe the port will be coming out and a new port will need to be placed. I also have a cyst on my neck that will be removed in the near future.
Thank you for your continued prayer.
Thursday, April 2, 2009
When it is all over... What will it really matter? I really don't feel like fighting for friendship after friendship to feel tumbled over. I feel so confused. I don't understand the world and I feel beaten down. This is the worst time to be feeling so small but between the loud TV my roommate needs to watch and I am just sick of everything.
If you're looking for happy posts with joyful things 100% of the time, find another blog.
Wednesday, April 1, 2009
They changed my floor and room today and I think it was almost like ripping my heart out of my chest. I said to my mom it was like taking my family from me. The nurses on that floor have cared for me so much and now I have entered an all adult floor. I type out by the nurses station after my little um, roommate went to sleep. I don't know how to handle having a roommate so close. She has really got me. However she's the sweetest woman I could be blessed with. We chatted for a bit and her name is Florance. She actually grew up with my grandparents. So it made the transition a little easier. I am still scared and nervous. It's like a whole different hospital when you get on the adult floor. It makes me wonder. What would comfort an adult in the hospital? Then I thought maybe if we just made little felt hearts around 1.5". Maybe they would be comforting... Then no. I think it's the walls they're dark. However they can't do much about that.
I don't know what to think of this new adventure to this new floor and being alone. Being 18. All of these things seem weird to me. I still sing and dance in my head I am still my 14 or 12 year old self. I wonder what would make these other patients feel happy and comfortable on an adult floor. Any ideas? Maybe a card? I don't know. What do you think?
I have been daydreaming mostly about dancing- singing and giggling and watching out my window at the clouds. I love to see. I don't really know where today went but it has went fast and I wonder if I spent it purposefully. It has been a good day- my Pastor explained how to travel the world in prayer. Today I tried it I have prayed all around the world for specific missionaries by name. I should be tired and filled with jet lag but I am excited for what plans God has. I daydream about peace about things that give me hope. Really I just daydream about my graduation party. I want it to be perfect. It's all I am holding onto. What makes you keep through the day?
I watch these nurses and doctors pass me as I write this post and they are all on a mission they have direct paths. What is the purpose I ask? It is not the direction it is the intention. I hope they remember they could be in the place that I am in some day.
To answer the question of device it is my port. It was posted about here and here. Thank you for all of your prayer. I hope you all are continuing to do well.
As I am closing this post I am seeing many things and a woman who passed me passes with a shaved head. Her daughter stated I couldn't believe it was my mom she was bald. The mom looked up and said I am bald?! Really bald? And they reached over and had a sack of hair and said yeah! We have your hair right here... That really surprised me. How interesting and what a job. I cannot imagine having your mother not believe about hair... The lady to my left is confused and sitting in the hall to have company as well but a different kind of company a content kind. She has pulled out her IV she looks around and she fixes her hair. She is someone I don't know but she deserves compassion. These people come from all walks of life and as they show up their pieces of stories put together a jumbled puzzle. I wonder, do the nurses that see these patients notice they have some creative minds, some amazing spirits, and a great amount of history within the halls. Do they appreciate their patients?
It makes me wonder... Here I go daydreaming...