Friday was an unfortunate day as it ended in me having to go to the ER, once again, for a grand-mal seizure. Tonic–clonic seizures (formerly known as grand mal seizures or gran mal seizures) are a type of generalized seizure that affects the entire brain (see Wikipedia for more information). At first it was thought, from my first one, to be medication induced, resulting from lack of Ativan in my system. But this seizure was much different in that I had just taken all my medication prior to my seizure, and while running low on Ativan, I was not out of Ativan. The only change in medication was when I went to the ER earlier that day (yes, I ended up back in the same ER following my seizure within 24 hours of my initial visit this week).

I find it difficult to understand how an RN can “forget” that Imitrex (Sumatriptan) is only found in INJECTION form, not IV form for one very important reason: it can stop the heart. I have survived 3-4 IV injected Imitrex situations out of pure luck but this one was not to be without problems. It could have very well lowered my seizure threshhold, which apparently isn’t very high to begin with due to my chronic problems as well as the vast amount of maintenance medications I am on, to the point where my other medications (oxycodone or whatever) were able to trigger the seizure when normally, they don’t.

This one was different, also, in the fact that I was alone in the room (kitchen) preparing my TPN bag after taking my nighttime medications, when it happened. I was standing instead of sitting in my chair, like I was the first time, which caused way more issues. From the pain and swelling, I figure during the seizure I hit my chin on the way down and ricocheted off the refrigerator a few times with my head and then finally landed on the floor. Of course the noise was loud enough to call my husband from clear across, on the other side of the house. Because we told him how well he did handling my last seizure, not 3 months ago, he considers himself an expert (I would never wish anyone an expert on handling seizures!) and did not feel it necessary to alert the paramedics with a call to 911, like he did last time. Too bad too; I wouldn’t mind saying hi to my neighborhood paramedics. They are great guys!

He simply held me up so as not to hit my head on the hard floor again, turned me on my side to allow fluid to come out of my mouth, and then waited for me to finish shaking. Afterwards we headed to my favorite ER and had a CT scan (I’m not allowed MRIs because of my neurostimulator and portacath).

I was not given a blood test; in fact, they didn’t give me anything by IV while there. I should have received a blood test. As if I could not make it easier on them, I have an accessed portacath from which blood flows freely when needed (I’m a hard stick now that my veins have shrunk; I make it a point to have them ALWAYS draw blood and give fluid through it). I only worry about my blood tests because I have started to develop petechiae under my eyes. I’ve also been running low blood counts for the past month. If it was just under one eye, I could attribute it to the fall from my seizure, but I have them under both eyes and it is starting to spread from out under my eye to my ears and other areas on my face. Hopefully it will start to heal and stop spreading as that might indicate a bigger underlying disease. I’m not entirely ready for that quite yet (as if you can ever be ready…).

So that is what I got to do this weekend. I wanted to make it a better weekend than laying around trying to recover the energy lost during the seizure, so we headed out to the tulip festival. I’ll wrap up this update with my favorite pictures from the day. I hope you are all enjoying your weekend and are having lots of happy tummy days~

These people were only a few of the ones that asked to take pictures with Ellie and I. I found the question odd, as I would never go up to anyone else and ask for a picture with their dog, but to each their own!

I have been meaning to get a video up on how I set up a new TPN cycle. I finally just did it one night and I think it turned out pretty well. I hope it helps people when combined with the pictures and written instructions.

I have more to update but that will have to wait until tomorrow. I started a new medication called, Relistor, and I have started seeing new doctors due to some administrative complications. I hope everyone is having a good tummy night ~

Sorry for the late post on this, but I had a few complications after the botox injection. I experienced quite a bit of pain for days after the procedure and made several ER trips to help control that pain. The EGD and sigmoidoscopy procedure went really well. Dr. Patterson says my colon and stomach looked healthy except for a non-functioning esophageal valve and unusually tight pyloric valve. That is where he injected the botox. I still haven’t noticed any difference. The procedure was performed on the 23rd of August. I plan to make an appointment with him next week to see where we go from here. I hear multiple injections are needed to notice a difference but if I experience the same pain for up to a week after, I’m not really sure I want to continue unless I’m offered better control for the pain. It was not good times.

As of now, I’m back into my normal routine. Pain continues to live with me at an 8 on the scale of uselessness. Migraines are flaring up more often due to the abnormal heatwave we are experiencing. I can’t wait for fall and winter where I can enjoy being outside and not having to worry about my energy being zapped by the sun or getting sick and dehydrated. My weight is being beautifully stable at around 110, thanks to TPN, the only form of nutrition that has worked for me with no pain. I run it on a 20 hour cycle starting at 9pm, ending at 5pm the next day. I get 2000ml of fluid in which there are 1450 calories. I supplement some of those calories with a few scoops of the only ice cream I can tolerate, Sherbet (tropical flavor!), at night. Believe it or not, the ice cream is doctor ordered. They say you MUST put something in your mouth and in your gut to keep it from completely dying off. No matter what it is, or how small – something must go through it. This is all I have found that works and I don’t feel like rocking this boat by trying something new. Not yet anyway.

Exciting News: I have received a smaller version of the same feeding bag I use, to check out and make sure it would work as mine does so I can 100% recommend it or not to other tube feeders. I still have not received the smallest of the bags, and will be writing again soon to see if I can get my hands on those. I can’t express it enough, I love my feeding bag. It is so comfortable I have actually fallen asleep on the couch with it on. I’ll have to make a video on how to properly load a feed into it as it gets a little tricky (my husband had some problems with it so I figured some others might as well). This weekend is going to be a nasty one, in terms of weather, so if I manage to stay out of the ER, I will do my best to get a video up and my pictures from the scope I had last month. It is interesting for those who haven’t seen or had one done before =)

Happy tummy days, keep hydrated and stay cool!

It has been a long time since I have had the energy to stay at my computer long enough to write anything of worth on my blog. I trust those who suffer from any sort of chronic illness understand. I have been in the longest flare-up of my life. It has been complicated by week-long migraines that completely paralyze me in pain; pain that makes my ever so constant nausea progress to vomiting. The only thing I could do to make it bearable was to head to the ER for IV pain medication, fluids, anti-nausea medication and at times, oxygen. Four hours later, I would be sent home, only to return the next night, requiring the same treatment.

They’d preform more tests, only to come up empty handed. I had CT scans, X-rays, lumbar punctures, and blood tests. I would continually ask what to do when another attack came, looking for confirmation and assurance that what I was doing was right, and they would say just to come back. So that is what I did, many, many times; thanks to my husband who drove me to and from the hospital day after day.

Along with the migraines I was fighting, I had GP flare-ups. I am not eating anything, save for sherbet ice cream at night. TPN is pretty much my sole source of nutrition. I run 2000ml over 20 hours. I find that being on more of a continuous cycle helps a bit with the migraines. Not a whole lot, but some. It does not, however, help with flare-ups. On the scale of uselessness, I live in a continual state of 8. I manage that fairly well. When it bumps up into 9, that is when I have problems and start breaking out medicine and patches to try to control it in order to avoid a trip to the ER. I have lidocaine patches and oxycodone for such cases. I’m also taking ultram 3x daily and use fentenyl patches for pain. I have liquid phenergan and IV zofran. IV zofran is daily and the liquid phenergan is when the IV stuff isn’t working. That is sort of how I play things, always having a back up. I want to know I did all I could at home before I rush myself to the ER.

Anyway, that is, in a nutshell, why I haven’t been updating my blog. I feel I have things more under control for now, and will be on more often to write more about my battles with GP and overall life. I will be making my first trip outside the state on TPN next week, so that will be quite the adventure. I’ll be sure to write about it, in case others are planning something similar and are curious as to the process. I’m nervous about making it through security at the airport. I haven’t traveled since the new rules went into place. I have a gastric neurostimulator on top of a port, so I imagine, getting through security won’t be much fun (on top of the syringes and other TPN materials I need to bring with me for the day). That’s for another entry. Hope you all are having a great Father’s Day and a good tummy day as well! Take it easy!

Well, I’ve been on TPN for about 2 months now. I have to say, it is turning out to be a lot easier on my body than tube feeding was. I find it a lot easier to keep up on the schedule. With tube feeding I would adjust it to how I was feeling and more often than not, I would get less calories than I should have been getting. This was mostly due to my recent diagnosis of CIIP (chronic idiopathic intestinal pseudo-obstruction). I have written up quite a bit of information on tube feeding and my experiences with it but since I have been on TPN, I thought I would switch over and give out some information on that.

TPN stands for Total Parenteral Nutrition. It is basically food broken down into its basic elemental form and is delivered through a vein. I did have it going through a vein in my upper arm via PICC but due to my wishful thinking lifestyle and length of time needing TPN, it was not a great option. So last month they placed a portacath under my skin, sutured the port to my chest wall and tunneled a catheter from the port into a vein in my neck and down to my Superior Vena Cava (SVC). I was let go that day.

Not going to lie to anyone, the procedure hurt and recovery time was long. The whole site was swollen a good 3 weeks post-op. But now, when it is reaccessed during a needle and dressing change, it doesn’t hurt barely at all. Long as the person doing it knows what they are doing !

Anyway, this weekend we are taking a pre-emptive approach to my pain, discomfort, nausea and fatigue via medication. I’m taking my medicine before things get bad in hopes to catch it early enough to keep me out of the ER. I now have IV zofran which so far has proven to be helpful. Victor has noticed a change for the better. Don’t know why – but hey, I’ll take it. I also had the energy to start and finish my TPN pages. Please feel free to read through them. The Scrub video can be found there! New photo section up as well.

>Living with TPN<