First Week of School

So my first week of school wasn't all that bad. I am hooked up to continuous feeds throughout the day and nobody but my close friends and teachers really know my feeding tube is there. There has been some adjustment from spending all day at home where if something beeps it's not a big deal and where I can just get up and get my medicines when they are due and just pick up things where I left them off, rather than if I need to go take meds or add formula to my feeding pump class doesn't stop if I get up and go to the nurses office. So far I have found out a rough idea of when I need to add formula seeings I can only carry around four hours of formula at a time and I usually get to the nurses office before my pump runs out and beeps. I have only beeped in the middle of class once and that was about the most embarrassing thing ever but really it only led me to miss a little bit of study hall and have a few students ask me about my tube and why it was beeping. The one thing that does suck about going to school in lunch, it's not fun sitting in a room full of students eating while I can't eat. Mainly I have found that if I find friends and do homework the eating kids don't bother me too much  plus I have the choice to go to the library during lunch. The other things I do at lunch is I fill up my feed backpack and take all of my nausea medicines plus my motility medicine. The last thing that I notice about going to school all day is that by the end of the day my body is drained and after I do my homework I am in bed by at least 9:30, which is pretty early for a teenager.  

First day of school as a tubie.

Rude Doctors at tube replacement

So my tube came out once again so once again we rushed to Riley hospital to have it changed. Where once we got down to IR we saw the doctor that's always down there who yesterday was a mr. grumpy pants which made him rude. He gave me to understand that this is the last time he is going to replace my tube with a button if my tube falls out again it is going to have to be a long PEG tube that is stitched in or they are going to have to do another surgery to separate me tubes. He also said that I should be able to do the change while being awake because he does this change on little kids who are awake all the time, and that the tube change doesn't hurt and even if it did I should take any pain killers I should just pray that the pain goes away. This all had me so upset that I was crying by the time the doctor left the room and child life walked in where she instantly went into work mode calming me down. After the change I was glad to be out of that building and leaving the rude doctors behind.

Not Tolerating My Feeds

Recently I have been having issues tolerating my feeds that go through my J-tube into my intestines. Meaning that as I run feeds there are side effects being caused, mine being sever nausea and belly pain. Because of this for the past week or so I have only been able to run two out of the six cans of formula that I need to run in a twenty-four hour day at a rate of 50 mls per hour rather than 60, and then for the rest of the time I have been running pedialyte at a rate of 30 mls per hour, in order to remain hydrated and keep up my electrolytes. But after waiting for days on the dietitian to call us back she finally called yesterday. She decided to change my formula form Isosource HN to Peptamin AF

So far the change in formula hasn't made a difference I am still having increased nausea and pain with my feeds but I have a few more days of the sample formula that dietitian gave us so I am going to continue running it for those days and hopefully that time I start tolerating it better. If not either I am going to have to change formulas again or the doctors are going to have to add a a fourth nausea medicine to my already lengthy list of medications.   

Hospitals Harbor Emotions

If you have every seen the show Grey's Anatomy you know that Seattle Grace Mercy West Hospital is full of different, crazy emotions and you only get to see those emotions for forty-five minutes every Thursday night starting at 9 am. Now just imagine spending hours in a Hospital that specializes in children two days in a row. I realized just how emotionally draining it is to be at a hospital for as long as I am this past week.
 It all started on Monday night when I was standing on my front porch and suddenly there was water dribbling down my stomach and next thing we know my tube was coming out of my stomach. Which looked like this......

Now obviously that tube has some issues seeings the button part is suppose to lie a dimes width from the skin not several inches. In the end we couldn't save that tube we had to put in my emergency one. So with no J-tube running to my intestines I had to go in Tuesday and get my tube fully replaced. 

That day at the hospital started around 10 am and by the time 1:30 came around my mom and I where not too happy with the doctors for telling us to come right in when they intended to fit me after all the scheduled patients. I was a shaking, jabbering, 16-year old ball of nerves sitting in the Day Surgery hearing small children taken from their mothers and fathers screaming crying back into on of the many operating rooms, and seeing the cancer patients come in who for all that it's worth make me feel healthy. Around 1 one of my friends who was near by meet me at the hospital and kept me company while we waited. We ended up being moved down to radiology around 4 pm......six hours after we arrived and where check into the hospital. I was ten times as nervous as I had been at 1:30 and my mom wasn't too happy with whom ever told us to come right in and that we would be able to get in the morning.  At this point I was glad to see the Whitney from child life was waiting in radiology for me to come down. She came in and started doing her thing; getting the story of what happened to the tube, talking to me to defuse the nerves and helping me create a mask that would be used to put me under. Between talking to the nurses, signing consent forms and waiting on the last kid to come out of the room it was now 4:30 when Whitney came back into the room telling me that she had to go and wasn't going to be able to go back and hold my hand while I went under. At the point I lost it and ended up a crying mess, because that was my routine. Walk back with Whitney, lay down on the table, hand her my glasses, take her hand while they start the laughing gas and strap me down to the table, and squeeze her hand and talk until I go under at which point she leaves. At the point the crying made Whitney feel terrible but she had to leave so she helped me tell a nurse I knew in radiology what needed to be done in order for me to feel safe and okay about going under, and then three hugs later Whitney went to clock out and that's right about the time we where told that they where finally ready to take me back. I hugged my friend thinking she was going to be going home once I went under and walked with the nurse who was going back for support back to the room where they would be doing the procedure. Next thing I remember I was awake enough for my mom to come back and she did, followed by the friend whom I thought was leaving. Apparently she got to her car and came back to give me a bracelet she got me and a hoodie I had asked to borrow, which after all of the days stress made me smile. We left the hospital around 6 and finally made it home around 7:30, Which was barely enough time for me to start formula feeds and get in a half a can of formula before I had to stop them at midnight for a test early the next day.

On Wednesday I had to be at the hospital at 9:30 for a tilt table test at 10. All in all that test wasn't too hard they hooked me up to all these different monitors and then had me lay there while they monitored me heart rate and blood pressure. The they moved the table so that I was standing and asked me to tell them about any symptoms I felt. After about 30 minutes the test was over and the doctor came in to tell us the results; the test was negative for any sort of autonomic dysfunction but these is a chance that it was a false negative and about then she left. We got up to leave and that was when my frustration caught up to me and I started crying because I am so tired of being put through all of these medical tests to still not know what is wrong with me. The nurse that was with me felt so bad that she took me back to the room filled with prizes that they usually give younger kids and let me pick out a few things, which didn't help my frustration much but gave me time to stop crying. All in all emotions have ran high while I've been at the hospital this week, and I am frustrated with all that's going on and still not knowing what is going on inside my own body.