One week

It has been one week since I left the University of Utah Hospital and it has been very nice to be home. Sleeping with out being woken by a nurse every 4 hours or by doctors at 5:45 in the morning is a blessed thing. This last week has been an interesting one as I am trying to learn about my new digestive system and how to get it to work. I have learned I have to eat very slowly and small amounts at a time. If I don't I deal with nausea, up set stomach and on the rare occasion vomiting. On the bright side, I can eat!! Not only that but I can drink! It is an amazing feeling to drink a couple of ounces or more and not throw it up. It may be a while before my stomach gets back to being able to eat regular meals but I will take the fact that I can eat. 

One thing that has been abundantly show to me over the last week is how blessed I am and how much I have been given. At this moment, I am very blessed to be alive and to have the future outlook that I do. I could have problems in the future but the likely hood is small. As of right now I am alive and I owe that to my family, to the guided medical professionals who were able to act swiftly and most importantly to my savior who protected me through all of this. I have been asked many times through out all of this how I deal with the craziness and with being sick all the time. I usually give my canned answer of how I feel like I will get better and that there isn't a need to be grumpy because that just makes others miserable too. I feel like till this point I have handled everything pretty well emotionally and a lot of that has to do with my faith and from the love and support I have received from my family and Friends. I have learned I'm not as strong as I think I am.

This week, I watched something that really hit me harder then I would have imagined. Kassia has been sick with a fever and a cough all week and that resulted in a lot of snuggle time with her on the couch in front of the TV. Sean and I had started watching this one show along time ago and we were excited to be able to finally watch the last season. When we go to the last episode, they were doing flash forwards of what had happened in these characters lives. One of the main characters, wife had ended up getting sick in their 40's probably and they showed a scene of the husband sitting next to her bed in the hospital. She ended up passing away and leaving the guy a single dad of two kids. It was when I saw that hospital scene, I came unglued. Even writing this I can't get through it without tears. 

The reality of what has been going on for the last year and half has been a lot more serious then I had been giving it credit. As the one going through it, I just soldiered on and figured that this is just part of life and we'll get through it. I knew this wasn't just effecting me but my focus was not so much on how this might be emotionally and physically taking a toll on those around me. Thinking about it from the perspective of those who love and care for me, they have seen me go from an energetic healthy 27 year old to a skeleton of a woman at 29. They could see how sick I was every time I would say, "no I'm fine", they would help me try to get better the best they could or help me see that I really wasn't fine and needed help. I lived/am living the consequences the vomiting has taken on me but they have had a front row seat to really see what it has done. From my father telling me how scared he was when he saw me in October because of how sick I looked to the comments of many friends who have expressed their concern for me. 

When I really stop to think about it, it is not healthy or normal for a 29 year old to have tube in her stomach to receive nutrition through and a line in her arm for hydration. It is not normal to have doctors appointments 3+ times a week and to have spent almost a month in the hospital. Having a blood transfusion and being told that I wasn't stable enough to be sent out of the ICU for a CT scan, isn't normal. In fact when I think about it, it's down right scary. Two weekends ago I needed 7 pints of blood, without it I probably wouldn't be here. I needed emergency surgery to fix the leak, again with out that I might not be here. It was a very humbling realization to know how my life had been saved.

So that brings me back to the TV show we were watching, when I saw the husband sitting next to his wife in the hospital, it hit me like a ton of bricks. In that moment, I saw Sean and the many times he has sat next to my hospital bed, praying for me to be ok. Praying for his wife and the mother of his children to make it through. He dealt with me and my craziness as I would foolishly telling the doctors that I was fine and I can handle it, all the time not realizing the peril I was actually in. Through it all Sean always was right next to me. The love of my life doing exactly what he promised to do on September 29th 2005, to love me forever and to always be there for me, no matter how broken I was. 

Unlike the TV program, I have made it through and have not left Sean a widower or my daughters Motherless. I have been blessed with the chance to stay here on earth a little longer. I know that life is fragile and can be taken away at any moment but today I am grateful to be alive and to have the hope of being able to do the things I dream of. I know many people don't have the luxury of even dreaming of leading a normal life and my heart truly aches for them. I have been given a new lease on life and I hope I can make the most of it. My problems in life are not over nor should I ever expect them to be but there are a few things that I have learned that will help me through my future problems. I know I am loved. I have seen such an out poring of love and affection from my family and friends I can't deny that I important and loved. I also am grateful for the perspectives that this trial has helped me see, I feel a lot more compassion for those around me and for those going through hard times. I also have felt my saviors love more times then I can count. I truly feel that I have had direct blessing because of the prayers and the fasting that has been done for me. There have been to many situations that have happened to my benefit for it to just be luck, I know I have been watched over, and maybe someday in another post will expand on those. 

As the weeks move on, life will continue to improve. I have to be patient with myself and my body and remember that it will all work out. Thank you all again for you love, support, and prayers. You all have played a very important part in my life. 

I came across this picture on one of my SMAS support groups and it is perfect:

Going home

Today I will finally be discharged from the hospital and on my way to recovery. I feel different about being able to go home this time around and I feel like life's possibilities are opening up to me again. 

Yesterday taught me a few lessons about myself and life, in regards to food. When they first gave me the chance to eat bread, I gobbled it down because my body was telling me that I was starving (which it actually was) and it tasted so delicious. The repercussions of that decision was pain, nausea and not being able to eat for the next few hours. It is funny how something that should be so good for my body and needed could cause such an awful reaction. I have since learned that my eating habits have to be dictated by what my body can handle and not by what it wants, which are two completely different things. My doctor told me this morning that I need to graze like a cow all day long and that I just need to take it slow. 

I am so very grateful for modern medicine because without it, I would not be here today. Because of caring Doctors, nurses and others, I am alive and now have the possibility to be the mother, wife, sister and friend that I want to be. I'm not out of the woods the yet but the trees are sure starting to thin and sky is getting blue. 

Thank you everyone for your love and support, your prays and kind thoughts, and for everything you have done for me and my family. I have been truly blessed and I can see the lord's hand in many aspects of my life. Things have been hard but I know my burden has been made lite many times and it has helped keep the smile on my face. 

I spent a lot of time looking at this view yesterday and I'm grateful I had a room with something to look at and remind me of the beauty in the world, especially when my diet over then next few weeks will consist of a lot things like this...

not the tastiest thing in the world but I am so glad that I can drink it and it will stay down! If this keeps up no more IV fluids or feeding tubes for me! 

Wake up bowels wake up!

To say it has been a while since I have eaten would be an understatement. While I've been here in the hospital, I haven't had anything to eat and only a little bit to drink. They are waiting for my bowels to wake up from the surgery. I have been informed many times that you don't have to eat anything for your bowels to produce gas or even poop. They say your body will always produce some kind of gas and with the bile, mucous and other gastric juices, your body is always producing waste of some kind. 

So here I am waiting. Waiting for things to wake up and function and to get things back to normal. Luckily they have moved my diet to a post operation diet which means I get chicken broth and jello! It's funny to be excited about that but right now it is a lot better then what I have had. :) 

Imagining this...

is this... 

right now. 

Blood loss and 10 new staples

Last Friday we had an appointment with Dr Glasgow to have my staples removed and double check everything. On Thursday, I was having a lot of pain in my upper left stomach and so we talked to the doctor about it but he didn't seam to be very concerned about it. So he removed the staples and sent us on our way with instructions on keeping tract of what I was eating and getting me off of the the J tube feeds. 

On the way home I started feeling very nauseous so I reclined the chair and tried to nap on the way home. Once we got home I noticed that I was having some diarrhea and thought that there might have been blood in it. I also thought it could have been the blueberries I had eaten the night before. Unfortunately, it kept getting worse over night and by the morning I was feeling awful. I finally told Sean that something wasn't right and that he needed to get me to the hospital. Sean and his Dad helped load me into the car and then we were off.  

We headed up to the University of Utah hospital as that is where I had my surgery done and I figured they would know what to do. When I got to the ER they said that my heart rate was 155 bpm and everything else was low. I started shaking and ER doctor quickly said that I was going to need a blood transfusion. They started placing IV lines and with in the hour they started giving me IVs and blood. I ended up needing 2 pints of blood in the ER and then 2 more when they moved me up to ICU. 

Once I got put in the ICU they ordered an endoscopy so they could look at the connections spots to see if they were bleeding. It was crazy because they set up the endoscopy in the room and all the doctors came to me to do it. Unfortunately, they didn't see anything that would have been the cause of the bleeding. The Doctors decided that I would need a colonoscopy to see if the bleed was being caused by the lower GI track. They put me on a diet of a bowl prep called GOLightly and then hoped i would clear me out. Unfortunately it just made me have to poop more blood. Due to my blood pressure, I wasn't allowed to leave the bed so they placed a urine catheter and I was resigned to have to us a bed pan. 

My life saving juices...

Before the colonoscopy. I was not feeling to great. 

Sean dealing with all the stress and hanging out with me in the SICU, on Sunday.

Sunday after they completed the Colonoscopy, they still couldn't find a cause of my bleeding. They found lots of blood in my colon but nothing that could be seen as the sources of the bleeding. After I woke up, there was a bit of talk about what to do next. They needed to find the source of the bleeding as after the colonoscopy they ended up needed to give me more blood. 

It was determined that I would have to have an angiogram done even with the risk of my allergy to contrast dye. I guess I was not stable enough for the doctors to feel comfortable with me doing the regular CT scan so I was prepped and sent down to an OR to complete the angiogram. They did this in case I might need surgery to fix the problem, then they could do it right then. I only remember bits and pieces of that experience as they gave me something to relax me and it knocked me out. They put a stent in a vein in my right hip to use to access my Superior Mesenteric Artery. I do remember the Cardiovascular surgeon saying that my SMA was one of the weirdest he had ever seen. Which is consistent with the SMAS, it's just funny to hear someones reaction to seeing it for the first time. 

During the angiogram, they did find they source of my bleeding. One of the connection sites was actually causing the bleeding. The angiogram team quickly determined that I would need surgery to repair the bleed but that it would need to be completed by the gastro surgery team. Luckily, they were able to get a hold of Dr Glasgow and he was able to come down to complete the surgery. It wasn't until a couple days later that I realized how much of an emergency situation this had all turned into. 

The surgery ended up taking about 2 hours as they had to remove about 5 inches of the bowel to revise the first surgery. Dr Glasgow also said he checked my whole intestines to make sure that there were not any tumors growing that could have caused the bleeding as well. I was then sewn back up and sent back to the SICU (surgical intensive care unit) to recover. Since I didn't respond well to the last time to the combination of pain medicines and anesthesia, they didn't allow me to have anything more then tylenol till I woke up more. I also still had the stent in my thigh so I wasn't allowed to bend my right leg at all. To put it simply, Sunday night and most of Monday was miserable and it's not something I ever wish to repeat. 

Me in my misery. You can tell the angle they had my bed on to assure that I didn't move too much. Around 11 in the morning, they finally removed the stent and I could start the count down as to when I could move again. They require you to lay still for 6 hours after so you don't bleed out.

Monday night after, 1 endoscopy, 1 colonoscopy, 1 angiogram, 1 open surgery, 1 stint, 7 pints of blood and multiple bags of fluids, I was finally transferred out of the ICU and to the regular floor. 

Luckily time passes and things get better. I am doing much better today then I did yesterday and will be better tomorrow. It is all a process and I have learned a bit through all of this. I have an amazing husband and I couldn't have done it with out him and all the strength I have felt from those around me. I am truly one blessed woman and although this time have been tough, it is just a that, a moment in time. It will pass, my scars will fade and my life will be mine once more. It will take time but it will come.

On the bright side I have a beautiful view of the mountains and these pretty flowers to look at :) #tendermercies