Wednesday, July 31, 2013

Guilt

As a mother this is really hard to write and as an individual it is hard to write as well, but I don't think I can do everything.  I feel so much guilt for what I drag my son through with all of this.  As many of you know, I am a single mother of a three year old little boy who is my everything and the light of my life.  I promise him every single day that I will never abandon him and that I will always be there for him, but I don't even know if I can keep that promise.  I have been the only constant in my son's life, most people have come and gone or have been sporadically involved, I have been there with him every day his whole life, I have literally only spent a couple weeks total apart from him.  I write this here because I got very ill last night, we went out to see my friend who is also his Godmother, but on the way home I started feeling very ill.  My son is very talkative and asks tons of questions, I was panicking because I wasn't sure I was going to make it the 15 minutes back to our house.  In my panic I yelled at my son to be quiet and of course he started asking why and a bunch of questions, which stressed me out more, I tried to tell him I wasn't feeling well at all and needed quiet, but he is a 3 year old that only works for a couple minutes.  He kept talking and I was just short with him because it was taking all my energy to not get sick in the car.  We then pulled into our place, I absolutely could not make it and got sick in my car as we pulled in.  I then ripped him out of his seat and started to run inside so I could make it to the bathroom, he was running behind me bawling, just so upset and scared.  As soon as we got inside, he followed me into the bathroom, as I got more sick, bawling uncontrollably, I looked at him and said sorry so many times, but it doesn't make me feel any less guilty.  He finally calmed down and just held my hand and that is when I felt like I was letting him down.  I can't make him feel like he has to sacrifice his life and innocence to take care of me or slow down for me.  Some days I don't think I can even do it and it breaks my heart so much to feel like every time I get sick I can't take care of him, I can't play with him.  I feel so much guilt that I am letting him down, I can't be the mother I always promised him I would be.  The only thing that runs through my head is the look on his face, the fear, the sadness, I caused all of that, it was me.  I feel so guilty for letting this illness take away from him.  Last night around 3:00 am, he woke up and came into my room and snuggled up in bed with me, I looked at him and knowing how I made him feel that night was just heartbreaking.  All I wanted to do was wake him up and apologize and tell him how much I loved him, but he was just so peaceful.  This illness has been a blessing and a curse, it made me realize what is important in life and to cherish everyone and everything because you could be gone in an instant, but at the same time it takes away from the everyday and takes away my ability to be the mom and the person that I know I can be.  I love my son with all my heart, he is my everything and although this device will never cure me, it was my option to fight to be who I want to be and be able to show my son that I will always be there and hopefully someday there will never be a question in my head about that.

#Gastroparesis #EnterraTherapy

Monday, July 29, 2013

Complications

So earlier this weekend I noticed some blood and drainage in my bra, less than a teaspoon per day.  The confusing part is that I have not had bleeding or drainage since the week after surgery.  It was also coming from the incision under my breast, which thus far has been healing the best with the least amount of problems.  I also slipped into an arrhythmia this weekend, it has been the craziest one I have had yet.  It started out normal, but things changed on Sunday.  I didn't pay too much attention to the bleeding and drainage thinking that I could just see the surgeon this week.  When Sunday rolled around my arrhythmia was out of control, not only was I doing the normal slow, my heart rate and blood pressure would jump very very high.  I called the nurse line just to talk to them about it and whether I was not being sensitive enough to the issue.  The nurse was concerned and said you need to be seen within 8 hours and scolded me for sitting on it all weekend and letting it drain, let the heart issues get out of control and let it become painful.  I went in and they basically turned me away as soon as I walked in, they called the on call surgeon and said if you don't have a fever you can leave.  I wasn't horribly disappointed because this is half what I expected because of the type of surgery and historically the ER's treatment of my complicated condition.

Today though I called and went in to see my actual surgeon, which is always the better option anyways.  He talked to me about it and said that my left breast is much more swollen than the right one.  He did say that he wasn't concerned yet and sometimes people can be sensitive to the placement and to give it one more month.  He was concerned though about the drainage, he didn't feel too much liquid around my device, but said to keep a watch on it and if I developed a fever to come in immediately and he would see me.  I had started feeling yesterday some pressure pain from the inflammation and fluid build up, which sometimes would throw off sharp pains.  He said that if this continues after this next month that I will have to get my device taken out and placed in my abdomen instead.  I really am not a fan of this option because it will bother me to no end and I have talked to many people who have complained about placement in the abdomen.  I really like it behind my breast, I think will just have to take it easier and really nurse it until I feel 100% again.  Still hoping that things will work well, just a couple set backs thus far.

On a lighter note, my boyfriend talked about the huge difference he has seen since I got this device.  I always think there isn't much change,  but then he points out that I don't get sick as often after I eat anymore, it is just hard to believe I could be starting to feel better.  I am glad to have his perspective on the outside because I am quite biased living with this my whole life.  Still feeling hopeful, just need to get over this little hiccup!

#gastroparesis #enterratherapy

Monday, July 22, 2013

The Costs

I just received my EOB and bills for my surgery, it cost over $66,000, which doesn't include individual doctor costs, medications and ongoing care.  I realized that my bills are getting steep and it is so stressful to pay all of them even with a job because of my need to take care of my son and other bills.  I started a gofundme site to help raise funds.  I do not get much support in general, but thought maybe some generous strangers will help me with my expenses.  I absolutely appreciate any help that anyone can give to me.  My hope is that this surgery will be a cheaper more permanent solution to my problem as opposed to taking medication the rest of my life.  Below is the site I set up for donations, any help would be greatly appreciated to help fund my recovery!

http://www.gofundme.com/3j8tb4

#Gastroparesis #EnterraTherapy

Sunday, July 21, 2013

Working Out, Allergy Update and Weight

So I am a little over three weeks post surgery and I worked out for the first time today.  I will admit it wasn't easy, I went pretty slow on the elliptical, but I was happy to get back to the gym finally!  I am sort of addicted to working out, so it was hard going for three weeks without working out! I did have a little discomfort in my breast with all the movement, so it will probably be a while until I can run or do anything high impact.  On the weight end, i have been holding steady, I did lose five or so pounds post surgery, but in the last week I have been holing pretty steady, which is a good thing.  I have been struggling a little with symptoms, but I have been trying not to take my meds most days, which was at my own prerogative, my doctor only reduced my medications. I know, I know I need to slow down, everyone keeps telling me that, but I am so eager to feel somewhat normal again.  On another note, I got most of the glue off and it is starting to look better, it is less red and no open sores.  The incisions though look excellent minus the allergic reaction. The one on my stomach looks like it won't be horribly noticeable and the one under my breast is also healing well. Things are looking good on the healing front, just need to slow down on the Gastroparesis healing part, I mean I have had it my whole life, so it might take a while for me to feel 100% or at least close to 100%.

Three weeks post surgery, the red and peeling is my allergic reaction

#gastroparesis #enterratherapy

Wednesday, July 17, 2013

Post Surgery....finally!!

I know, I know I have been slacking here on updating my progress post surgery, first I was recovering and couldn't stay awake long enough to write, then I was working on this insane online class I am in, but things have finally calmed down and I have a couple minutes to write here!



I went in for surgery on June 28th and it went very well.  As you can see from the pictures on my previous post, they inserted the pacer behind my left breast and the leads in my stomach, hence the incision in my abdomen.  The surgeon was all excited and said you will be out tomorrow and running in a week before I went into surgery, honestly I thought he was nuts!!  I came to from surgery and they had me in recovery for a long time because they were having a hard time keeping my heart and blood pressure stable.  Finally they got me into a room in the afternoon to rest.  The first day was honestly just sleeping a lot and being up to speed on painkillers.  I will not lie, sitting up and getting out of bed was insanely painful mainly because of the incision on my stomach.  Actually, the incision under my breast didn't really hurt the first couple days, well except when they lifted my breast to look at it, but the one on my stomach really sucked.  Needless to say, I was not out of the hospital the next day, I ended up staying in four days.  Day one really wasn't too exciting, they had to help me in and out of bed and tried to get me walking a little that night, but I barely made it out of the room before I had to turn around and go back into my bed.  The second day was better, I was able to get up and walk more and I was able to start getting helping a little to get myself out of bed.  The one thing that kept getting worse was that I was super bloated, like 5 months pregnant bloated, I actually think that is what made the abdominal incision hurt more.  I started to be weaned back onto food, but to be honest I did not really have the appetite for it at that point because I was so bloated and uncomfortable and in pain.  The painkillers did their work well though, I got a ton of sleep while I was in the hospital!  By the third day I was starting to do more on my own, but they didn't want to let me go until I had something more than clear liquids to drink and I could take oral pain killers.  By day four I was on the full liquid diet and was able to take my pain pills by mouth, plus I could walk around the ward at least twice.  It is insane that the night before surgery I was out running and then I could barely walk afterwards!

I would say the worst part when I got home was the bloating, it took about a week or more until it really died down and I got things moving through.  The doctor kept telling me that things would get better the faster I got off the pain medication because it is contributing to the bloating and basically stopping my system altogether.  I slept a lot the first couple days and didn't leave the house because I was slow moving.  The doctor told me to walk 30 minutes per day, which I kind of had to work up to with the heat that has been around here and the incisions and pain killers slowing me down.  I honestly felt like an old grandma.  Also, after I left the hospital and the last day I was there man did my breast hurt ahhh it was crazy!  It felt like a super super sore muscle, which I assume is what it was a bruised muscle or healing while the device was setting in place, let me just say nothing really relieved the pain besides the pain killers, I got special bras and went without one, it didn't really matter, to be honest the only way I could sleep at night was if I was taking the pain killers.  I actually for the most part didn't need the pain killers every four hours like was prescribed on the bottle, I was basically down to one or two a day by two days out of the hospital (6 days post op).  I ended up developing some really bad anxiety from the Percocet, so I had to switch to Vicodin literally a day or two before I stopped taking them altogether.  I took my last pain killer the Sunday after surgery so 9 days post op, which I think was really good.  There was one other day later that week where my breast was sore, so I took it to go to bed at night, but otherwise I got off the pain killers fairly quickly.  I will say that with a caveat though, I am not a fan of painkillers, so I was still sore, but it was more so like I just worked out sore feeling under my breast.  For the abdominal incision I basically didn't have much pain there after I left the hospital unless I laughed, sneezed, coughed, etc.  I went into my surgeon about a week and a half post surgery and he thought my incisions looked great and I told him they were already starting to itch, which is a good post op sign that it was healing.  I went to my GI doctor the next day for my one week follow up and he was pleased with my progress, since surgery I had only thrown up once and had a couple bouts of nausea, so he upped my device a little bit, lowered my doses on some of my medications and took me off one, which I was really excited about because I had to take that one four times a day, it was a liquid and very annoying to lug around.  My GI doctor did tell me after surgery and after the adjustment that it would take a while to see results, so I have been trying to be patient with it.  He also said that I need to ease myself back into eating food, especially things I have not eaten in forever.  So far it has been pretty good.  I have only had one setback and it was that today I went into the surgeon because the incision on my stomach was peeling, but the skin under was raw and had sores.  The surgeon said that I was having an allergic reaction to the Dermabond used for sealing the wound (as opposed to stitches or staples), but to be safe, since an infection would be very dangerous with an implanted device, he prescribed me a week of antibiotics to ensure that no infection formed or the curb one that may be in the beginning stages from this reaction.

I did have a rough time with eating the first couple days, but more so from the bloating, surgery and pain killers basically stopping my system, so I will admit that I lost another 5-10 lbs post surgery, but I have not lost any since then, I haven't gained any, but my doctor said I was in a safe range and that he was happy to see that I wasn't losing any more weight and at least maintaining.  I am really hoping that I can continue down this recovery path, get over this allergic reaction/infection and start a new life, my GI doctor is very optimistic and very supportive, so it is making me feel more confident and optimistic about the ultimate success of this surgery.  I will add as a note, without the allergic reaction/infection I would be almost completely healed up, my incisions don't hurt at all anymore, my breast is not sore and I feel normal again at least from the surgery perspective and I am a little less than three weeks out.  I went back to work the Monday after surgery, so 10 days after and I will admit it wasn't easy, but mainly because of how tired I was and I am glad I did, getting back into the normal routine made the recovery minimized and honestly by the end of the second week I would say I was about 90% in terms of surgical recovery.  Feeling almost 100% now if it wasn't for that pesky reaction, but it should be gone within the week :-)

Feeling great about everything and so thankful that I made it to this point at least where I made it through the recovery, it was rough at some points, but in the long run was actually pretty quick and not horrible :-)

#Gastroparesis #EnterraTherapy

Wednesday, July 3, 2013

The Picture Post

I am almost feeling well enough to write my exhaustive post surgery blog post, I am hoping to get to it this weekend.  For now though,I took a couple pictures while in the hospital that I will share to tide you over :)
Here is my photo right before surgery all snugly in my bear paw :)
Picture right after I got to my room post surgery, you can tell I was drugged up
Photos of my bandages over my two incisions
After they took off my bandages, my stomach was fairly bloated.  One incision under my left breast for the pacer and one in the center of my stomach for my leads in my stomach.
Ending on a pretty note, the hand painted mural that covered the whole wall of my hospital room :)

I will update more this weekend :)

#gastroparesis #enterratherapy