A better day

Today has been a better day. No more seizures thankfully. Last night we "slept" at our friends' house. Gess seemed to get a fair amount of sleep, but I had a hard time sleeping. I kept listening to him breathe. Every little twitch or movement jolted me awake. For a couple of hours I just sat there not even closing my eyes because all I could "see" was the seizure. I am not sure why it affected me so much, but it was one of the more disturbing things that I have seen. I think that part of it is the unknown and then also the non-responsive state that he was in. Physical things are one thing, but more "mental" things are another.

We came home around 10:00 ish this morning and I did a bit at home. I was exhausted so we took a nap. The weather has changed so we curled up and cuddled with Beauty. We were both able to get some sleep and stayed in bed for most of the day. When I woke up I felt a bit better, I think that the exhaustion has just been wearing on me.

This evening has been equally uneventful. Chinese delivery. DVR-ed TV. The three of us scrunched together on the couch. I did a little homework, a little shopping, facebook.

Gess's dad decided to come out next week. He is having some issues with the condo he is closing on soon.

So, here's hoping for a low key few days and then a good visit with Gess's dad.

Seizure

Gessner had a seizure tonight. Luckily he was in bed and I was right
there, but it was probably the scariest thing that I have ever
experienced. I was getting ready to leave for a CFF event and
wouldn't have been there if it had happened 10 minutes later. It
probably lasted about a minute, though it is hard to tell. The worst
part was when it was over his lips were blue and he was
nonresponsive. He just laid there with his eyes open but he would
respond to anything. I called 911 and then my friend Tasha. The fire
truck got there rather quickly and Gess finally started to be somewhat
responsive. He was really confused and kept asking me what happened.

They made sure he was stable, gave him o2 and called for an
ambulance. It seemed to take forever for them to get there and get us
to the ER.

The ER doctors think that it was caused by demoral. They also said
that meropenem (one of the abx he is currently on) can cause
seizures. They took blood and urine to measure the demoral
metabolites in his system, but we won't have those results for awhile.
The ER sent him home, though I would have prefered for them to admit
him. I did have the ER doctor consult with the pulmonary doctor on
call (who happens to be the director of the CF clinic) and she agreed
that it was fine for him to come home. We are staying at our friends'
house tonight so that I have back up in case something else happens.

I'm freaked out and scared that it is going to happen again, and worse
that I won't be there when it does. I called Gess's dad who
immediately booked a plane ticket and will be here at 3:00 pm
tomorrow. There really isn't anything that he can do, but I will be
glad to have him. Gess was mad that I told him to come, but I didn't
know what else to do.

I keep playing the last few days in my mind to see if there was
something that I missed or something that I should have done that
might have prevented this. I did not want him to get discharged from
the hospital yesterday. We actually got in an argument about it. I
just felt like he still needed to be there, but he wanted to come home.

I feel so much responsibility for watching over him and feel like
lately I have been failing.

Feeling Broken

Things are rough right now. Gess is in the hospital and I just feel like I am at the end of my rope. There isn't anything specific that is going on; in the grand scheme of "CF stuff" this seems rather minor, but it has just hit me. I think that it is just the combo of everything that is going on. I hate when I feel like this because I feel so utterly inadequate. The words "I hate myself" pop into my head too many times a day and they are getting harder to push away. Today I have done basically nothing. I just feel like I can't possibly move to do much. I have SO much to do and no excuse for not doing it. Yet, I just can't seem to make myself act. I am tired, no, I am exhausted. I am broken. Of course, Gess needs me and so I feel guilty for being such a wreck. I guess I will put on my big girl pants tomorrow, suck it up, and power through. Or at least I hope I will be able to.

In the hospital

Gess is in the hospital again. He hasn't been feeling well...sort of
fluish. It seemed to be getting worse instead of better so he decided
to go in. I was still on narcotics from my surgery, so a friend took
him in. They admitted him and put him on tobra and meripereom. They
also gave him fluids and pain meds.

They ran a bunch of tests, including for the swine flu. In fact I am
struggling to type this because my iPhone does not like the gloves I
am required to wear as contact precaution.

Gess is looking a lot better and feeling better too. He has only
vomited once today and that was coughing induced.

I believe that if the flu test comes back negative he will be able to
come home tomorrow.

Taking Care

My post about Compassion Fatigue has me thinking about things that I can do to take care of myself.  So, I am going to have a series of posts about this.  

One good way for me to relax is to read a good book.  I love books...get me in a bookstore (or on amazon.com) and you should hide my wallet!  When I was a kid, my siblings and I would go to the library every week during the summer to participate in their summer reading programs.  My sister and I would get huge stacks of books each week and then go home and devour them.  Some of them were silly books, but they were books nonetheless.  My love of reading continued through high school and college.  When I got to law school, however, I found that I stopped reading for pleasure. I think that it was because I was reading so much for class.  Occasionally I would get a "beach read" type book and more than once I found myself reading through the night instead of studying.

After law school I started to read again and it has been a good source of relaxation for me.  I generally have several books going at once and read a wide variety of book.  On top of this, I formed a book club.  That has been great.  We meet once a month (roughly) and rotate who hosts.  We have dinner, talk, laugh, and generally have a great time.

I also carry a book with me most places and that certainly comes in handy when we unexpectedly end up in the hospital!  I read all of Water for Elephants by Sara Gruen during one ER visit.

Compassion Fatigue

I was reading an article in Oprah magazine (there are good articles in it, I swear!) about Compassion Fatigue that I found very interesting.  Basically, it is the term that doctors have given to what happens to some people who are chronic caregivers.  It is different from burn out and has similar symptoms to PTSD.  In fact, another name for it is Secondary Traumatic Stress Disorder.  My reaction when I read this was "of course this happens."  I have experienced it myself (and think that I am finally coming out of a bout right now) and have seen other people experience it.  That being said, there was something that struck me about having a label to give to it and some sort of "official" recognition that this exists.

One thing that I have found many caregivers, including myself, experience is guilt.  I sometimes feel guilty because I am worn out, stressed, exhausted, etc.  As I type this, I realize how silly that sounds, but it is something that I do experience.  Much more frequently than I would like to admit.  

So, what can I do with this new "awareness"?  I guess it is just a reminder of what I already know--I need to make it a point to take care of myself too.  CF (and other stressors) are difficult.  There is no way of getting around that.  And in order to do my best at helping Gess through these things, I need to be healthy and sane.

The question is, how to do this?  As a perpetual "doer" I do find it difficult at times to identify my needs and know of things that I can do to "take care" of myself.  I used to be so bad that Gess would draw me a bath, light candles, and then literally lock me in the bathroom with instructions to relax until he let me out! (I had this habit of taking baths to relax, only to be ready to get out by the time the tub filled all the way!).

The Oprah article has the following recommendations:

• Mindfulness meditation: It's been shown to decrease depression and anxiety while boosting empathy.Oprah.com: Try these meditation exercises

• Keeping a journal: Research suggests that reflective writing helps prevent compassion fatigue.

• A daily act of self-centering: Set an alarm for noon and take four deep breaths; or when you wash your hands, sink into the experience, feeling the sensation of the water on your skin while noting, "I am worthy of my own time."

• Staying connected to the outside world with at least a phone call every day. Better yet, get outside, even just to take a walk.

• And don't be afraid to ask for help.

http://www.cnn.com/2009/LIVING/personal/08/28/o.have.compassion.fatigue/

I am going to make it a point to try to find new ways to take care of myself and to actually practice  the ones that I know work.  I also encourage all of you out there in blogger-land to do the same and let me know what you find that works!!

Oh, I also found a Compassion Fatigue Awareness Project--looks like a good resource, so I will check it out!

 

Gene Linked to Liver Disease in Cystic Fibrosis

Interesting article about liver disease and CF. Also, I think that Gess was one of the patients in the study (though I could be wrong, he did several at UNC)

http://www.drugs.com/news/gene-linked-liver-cystic-fibrosis-19746.html

Gene Linked to Liver Disease in Cystic Fibrosis

TUESDAY, Sept. 8 -- A variant of a particular gene in people with cystic fibrosis greatly increases their chances of developing severe liver disease, new research shows.

Cystic fibrosis is an inherited disorder that can lead to deadly lung infections and digestive problems.

About 3 percent to 5 percent of the 30,000 people in the United States with the condition will also develop a serious form of liver disease, including cirrhosis and portal hypertension, or high blood pressure caused by obstruction in the liver, according to the Cystic Fibrosis Foundation.

Researchers from University of North Carolina at Chapel Hill analyzed nine variants in five genes previously implicated in cystic fibrosis liver disease. The study included 124 patients with cystic fibrosis liver disease and 843 patients without liver disease. A second study looked at a different group of 136 patients with cystic fibrosis liver disease and 1,088 without liver disease.

The researchers found that people who had the "SERPINA1 Z allele," or gene variation, had a five times greater chance of developing liver disease. The other variants did not increase the risk of liver disease.

About 2.2 percent of people with cystic fibrosis carry the SERPINA1 Z allele, according to the study published in the Sept. 9 issue of the Journal of the American Medical Association..

Screening for the gene variation could help identify those at risk of developing the liver disease, the researchers wrote.

"The identification of the SERPINA1 Z allele as the first marker for the development of severe liver disease in CF [cystic fibrosis] illustrates the possibility of identifying CF risk factors early in life, conceptually as a secondary component of neonatal screening after the diagnosis of CF is confirmed," researchers wrote.

Updates

I went to Yakima to be with my dad on Monday evening. We got into town late, so didn't go to the hospital immediately. Instead, we went to the hotel and thanks to Ambien I slept pretty well. We went to the hospital early on Tuesday morning. Surprisingly, it went pretty well with seeing my dad. I guess I just left the "other" stuff at the door and dealt with the matter at hand. He actually looked pretty good and was in good spirits. His left arm is extremely swollen. He has a large blood clot in that arm. The doctors think that is was caused by the mass in his chest/lungs pushing against the vessel. They started him on a heprin drip to prevent more clots from forming and then started him on coumadin.

They did a bronchoscopy on Monday and took some samples from his enlarged lympnodes. And then we waited. And waited and waited. The pulmonologist told us that he is sure that the mass is cancer, but that he doesn't know what type. Based on the CT Scan it is unclear whether the mass is inside the lungs and jutting out or if it is on the outside near the lungs. His lung functions are pretty good, considering he has smoked for 60 years. His FEV1 was at 59%. His O2 saturation levels were low, so they kept him on 2 liters of 02 (on which he satted at 93-96%). I am not sure if this means that he will go home on supplemental 02.

I spend most of Tuesday and Wednesday at the hospital with him. We talked a lot. My aunt that I rarely see was also there, so we talked too. He told a lot of stories about when he was younger and when I was little. Many of those stories were hard to hear. They were stories about him being drunk and me being a little girl. Stories that are painful and that I would rather forget. So. I am carrying those with me right now and not quite sure what to do with them.

When we left the hospital on Wednesday evening the doctors thought that they would discharge him on Thursday, but subsequently they decided that they would keep him until they got the biopsy results back. Today (Friday) the doctor said that the sample taken during the bronch was not large enough, so they had to take another sample. I think that sample was taken today, but the results won't be back until Tuesday or Thursday, which means that he will be spending the long weekend in the hospital.

So far I am okay with everything...but am not sure what will come. I had pretty successfully shut out some of the issues with him from the past, but this is forcing them back into view again. At this point, I really do feel like I am "done" with those issues, as "done" as you can be. They happened, and there is nothing that can be done to change them. He is at least trying to change and be a different person, which I do respect. So, maybe that will be it and I will just deal with the medical issues at hand. I don't know for sure.

When we came home we brought my 18 year old brother home with us for a visit. There is a lot going on with him right now, and I don't feel like getting into the details. But suffice it to say that the last couple of days have been trying emotionally for me.

I am exhausted and am ready for a break and am going to try to get one this weekend even if it means kicking the boys out of the house!