The 26 and 27

Monday morning I was all prepped and ready to be sent home until, Dr Glasgow came in and told me that I needed to walk more and that he wasn't ready to send me home yet. He wanted to advance my diet and see how I would do. He didn't want to send me home with out having eaten something more substantial. I was a little bummed but I also understand why he wanted to keep me here. I was just ready to go home. My girls were there and my mom was coming into town.

Day Five of my hospital stay.

My first full meal. Unfortunately I only made it through half the toast and half the pudding before I started feeling nauseous but it was a start.

The view from my room. I was a little board and spent some time watching the people climb the mountains behind the Huntsman Cancer institute. 

My room. I love the drawing on the board and the instructions to walk more. 

Luckily on the Tuesday, Dr Glasgow couldn't see a reason to keep me any longer so I was allowed to go home!! I was nice to be free and know that I could go home and be around family. 6 days in the hospital is too long. I am so grateful for the care I received but it was time to be home. 

The 24th

Today has been an interesting on for sure, as it started off so well and ended not as well. In the morning I was able to get up and move around quite a bit, I went for a rather long walk with the physical therapy gal and then was able to take a shower. They had to wrap me all up so I wouldn't get my PICC line wet or the nerve block wet. They also instructed me, as much s possible, to not get the incision wet either. I'm glad the shower had a shower head that was removable/a wand or it would have been a lot harder to keep everything from not getting too wet. It was worth the effort as I felt disgusting but it really did tire me out. 

I have been seen by quite a few residents while I have been here which hasn't been too bad because they have been coming in one by one and not in droves and I don't feel like I have to tell my story a thousand times for them to know what is going on. They already know, which has been really nice. Any way the one I saw today he is in his last year of residency for general surgery, he will then spend another year doing a fellowship for plastic surgery. It was kind of funny because he asked me what connection we had with Ohio State, since the day before Sean had worn an Ohio State shirt. I told him that is were Sean is doing his PHD and the resident proceeded to tell me that is where he went for Medical School. It has been funny all the little connection back to Ohio state/Ohio that have been made since being here in the hospital. Anyway this resident ended up taking the dressing off my incision and giving me instructions on how to care for it. He also said that my diet would be changed to a full liquid diet to see how I tolerated thicker liquids.

For noon, they brought me in a tray that had pudding, icecream, apple juice, veggie broth and milk on it. I was exited to try something a little different then the apple juice i had been drinking so it was suggested that I try the ice cream first as it would melt first. So I did and it was the biggest mistake ever. It put me in so much pain, it brought tears to my eyes. I was doubled over and they ended up having to give me some more medicine to help bring the pain level back down. It was pretty miserable I have to say. It ended up keeping me down for a good portion of the day. Let's just say, it will be a long time before I will want ice cream again. 

Luckily, I did end up having a good distraction in the afternoon. Sean came in around noon ish and then his mom came to visit, and she brought Kassia with her. I have missed my girls for sure but it hits harder once you see them again. Kassia had fallen asleep on the way here so she was a little groggy coming in. It's only been two days since I have seen here but I swear she has grown in that time. She was very sweet and it really did brighten my day to have her and Kathy here. 

Since I really shouldn't hold her, we would put her between my legs and let her sit or lay down there, She has started to do this really cute thing were she sucks on her bottom lip. As you can see in the picture. 

She was laying down and I was trying to get my camera ready to take a picture of her and this is what i saw when I looked into the camera. She didn't want to roll over and look, just tipped her head back.

Once they left, I was able to get a little bit of sleep, while Sean worked on his class work. He stayed with me till about 9 which was really nice. We ended up going for a walk, which may have not been the wisest thing as I was in a bit of pain, but then we came back and finished watching Men in Black 3. It was really nice to just be able to spend some time with Sean. Once he left though the pain medicine Kicked in and I was out. 

The 25th

Mornings in the hospital always start a lot earlier then I think they should. You would think by this hospital stay I would be used to it but no, I don't think it is something you just get used to. Have I learned the pattern and learned how to deal with it, yes to a point but still, the minuet you go home, you are back on your own time schedule and you don't have people poking and prodding you every 4 hours even in the dead of night, and you can actually get a full nights sleep (well unless you are so unwell that you can't sleep well or you have kiddos waking you up). 

Rant aside, the resident Doctor came in this morning to check to make sure everything was going alright. I hadn't had any narcotics for a while and he was impressed with my improvement. He didn't have much to say about the ice cream incident but he just suggested I listen to my body and take it slow. He then checked my "on-Q ball" which delivers a numbing agent to block the incision site to help with the pain. This thing has been great because while I have had a lot of pain with my intestines, the incision hasn't really hurt at all. The resident Doctor said that the ball might last for another day or so and if it wasn't out by the time I was ready to go home, then I could just remove it. 

Being Sunday, and being in Utah, I had the opportunity to attend a little sacrament meeting being held in the hospital chapel room. Sean brought Maia up to attend with me and it was so good to see both of them but I hadn't seen Maia since going into the hospital. She was all dressed up and ready to go and was pretty snuggly, which was good because I don't think I could have handled a rambunctious kiddo.

Unfortunately, I wasn't able to stay the whole time because I needed to get back to a bathroom. One of the things about surgery, especially abdominal surgery, they monitor your bowl movements pretty closely and the nurses get excited when you start passing gas and especially when you go poo the first time after surgery. Lets just say yesterday, you may have needed a gas mask to come into my room. I would apologize to the nurses but they said that passing gas on this floor was a great thing. 

Maia and Sean didn't stay for too long as Maia was getting pretty tired and it was time for her to go home for her nap. Luckily I would get to see her again later on that evening. 

After they left, I got a wonderful surprise visit from my brother Scott. He drove down here just to see me and say hi. It was very very sweet of him and it brought tears to my eyes that he would take the time to come see me. We had a very nice conversation that was too short as he had to drive back to Rexburge that night. 

Right after he left, I got another suprise visit from my GI dr, Dr. Kawa. I was really shocked to see him there. He came in to check in on me and my progress. It was way above and beyond what I expected but it was so good to update him and thank him for never giving up on his diagnosis for me. It would have been so easy for him to have pushed it aside and looked for something else but he stuck to his guns and I got the help I needed. 

At the end of that Visit, Sean's parents, Maia, Kassia and Grandma, came to visit.it was nice to see them and to see the girls again. 

21 staples later...

Pre Op picture

I wanted to give you all a little update while I am awake. The pain medicine makes me pretty sleepy, so there are times when I float in and out of consciousness. According to my surgeon, Dr Glasgow, the surgery went seamlessly. He actually said it was probably his easiest of the day. As expected It took me a long time to wake up from the anesthesia. When I did start to wake up, I was in quite a bit of pain, which prompted the nurse to give a normal dose of pain medicine. What ever it was made me incredibly sleepy, to the point they, the nurse and Sean, had a hard time keeping me awake. For then next few hours, they spent time yelling at me and trying to get me to talk. All I wanted to do was sleep but every time I would fall asleep, I would stop breathing. It was almost like I had sleep apnea. Once I was at the point of waking my self up when I wasn't breathing they figured I was going to be fine.

The hospital was completely full due to the flu and because of the situation at the hospital, I ended up spending more time in the recovery room because they didn't have a bed for me in the actual hospital until about 1:30 in the morning. Which was actually very fortunate because the Doctor said I might have to camp out in the recovery room all night. Once we got to the room, they tried to get me to use the toilet, which ended up just being a kamode next to the bed but I felt so nauseous and dizzy that they had to literally pick me up and put me back into bed. The rest of the night was spent with them trying to wake me up every hour to make sure I was still alive. Well they also had monitors to make sure I stayed alive. I'm not very much of a fan of getting yelled at when all I want to do is sleep but I understand why they do it.

In the morning I could feel the anesthesia start to wear off and that allowed me to get up and move a little more. Doctor Glasgow came in at about 6:45 in the morning to talk to me about the surgery and gave me a long talk about how I needed to be up and moving as much as possible. I agree with him but I really have to get my legs back under me before I can do too much. He also explained that they were able to do the surgery without having to move my GJ tube, which is a HUGE blessing because if they would have moved it, it would have resulted in another whole in my stomach and I would have to wait at least 3 months before they would be able to take it out. He also explained that they would be starting me on a clear liquid diet, meaning I was allowed to have things like Apple juice and Chicken broth, It was kind of funny though when the brought me the chicken broth they quickly took it away because it had gluten in it. So the only kind of broth I was allowed was vegetable. 

One of the nice things about the rooms here is that they are private and they have a couch that folds out into a bed, which allowed Sean to be able to spend the night with me and be there for me the next day, He said it wasn't very comfortable but It beat having to sleep in a chair. I'm so blessed to have him here through all of this. He has been quite the trooper and hasn't shown, to me anyway, how hard this really has been on him. 

My goals for the 23rd were pretty much to get me out of bed and to the bathroom and to manage my pain levels. Pain is an interesting thing and how they manage curtain aspects of it is a bit of a marvel. I currently have a nerve block in my stomach to block the pain from where I was brutally cut open. It is nice because that part of my stomach is numb and most of my pain comes from the basketball game (or rugby game as Dr Glasgow called it) that they played on top or with my intestines. I was also given the option to push a button that would deliver pain medicine through my PICC line, which I really only used if I wanted to take a nap because with in about 5 minuets I would get so sleepy. Hence the being in and out of consciousness all day.

I am so very grateful for everyones prayers and thoughts for me. I really feel like everything went so well because of all the fasting and prayers that have been said on my behalf. So thank you thank you thank you!

My gear...

Post surgery picture.

Surgery

Today is the day. Although this was only scheduled 2 weeks ago, I feel like I have been preparing for this moment ever since I received the diagnosis for SMA syndrome back in November. Even when the first surgeon told me that he didn't think I had SMAS, I still felt like I would need surgery to correct this problem. So here I am, at 7 in the morning unable to sleep anymore because of all the emotions running through my head at this moment. 

I have thought a lot about these emotions of mine as they don't all make sense. I guess though that is part of life and mixed emotions are expected. I have to say though, when it comes down to it, I feel at peace with our decision. Will everything go perfectly? We and many others have been praying that it does. Does that mean that will happen, who knows, and that is ok. I am at the point that I have to put trust in the decision that has been made, in my doctors, in my family, and in my Heavenly Father. I don't know what the out come of today will be. It could heal me and I never have a problem again, it could not change my situation at all or it could potentially make things worse. Do I think it will make things worse, probably not. Other then the complications due to malnutrition and dehydration, I am a healthy 29 year old. I don't have a lot of other problems, which increase my chances of less complications. Will this 100% cure me, I hope so but I am prepared for the alternative that it may not.

I also know that recovery will take a while and that I probably wont see results right off. I have been vomiting for over a year and a half now and my body will need time to retrain its self to eat and properly digest food again, especially since there will be a new route for food to go. The body is an amazing thing but no matter how much we may want things to change instantly, many times, time is what is needed to help the body heal and find its new normal. 

I want to thank everyone so much for all the love and support you have shown me and my family through this crazy time. I have never felt so much love in my life before. I know I am loved and that I am blessed. This trial has been crazy but through it all, I have never felt alone or forgotten. I am blessed beyond what I even know. I have felt my Saviors and my Heavenly Fathers love so much through this and many times that love has been shown through all of you. I have had the opportunity to grow so much from this and this experience has really shown me how our trials are tailored to help us grow in ways we never imagined possible. We each have our trials and although they may be similar to others, they are our own and meant to help us become stronger. Some challenges last longer then others and I feel some may not even be conquered in this life time but at some point all will be alright. 

Thank you again for all your love and support and I hope you know how much I appreciate and love you all. My heart is over whelmed right now and I can't express fully what I feel, but know I will be taking you all with me in heart as I head into surgery and into the weeks of recovery ahead of me. 

Love

Shauna

Pre surgery fun

The night before surgery, I really wanted to do something and Sean's Mom was supportive as well so we decided to go bowling as a family. It was exactly what we needed and it was so fun to get out and not worry about the next day. 

Superior Mesenteric Artery Syndrome (SMAS)

I have waited for quite a while to write about this as I have been playing a yoyo game for quite a while as to whether or not I had been correctly diagnosed. Back in November, when I was in the hospital, I had an MRI done and it showed that I have something that is called Superior Mesenteric Artery Syndrome (SMAS) and this syndrome is what has been causing my vomiting for the past 18 months. 

Normally the Superior Mesenteric Artery (SMA), which comes off of the main abdominal aorta, curves over the  top of the duodenum (the first part of the small intestines) and supplies the blood for the small intestines. Usually there is a fat pad that acts as a buffer and keeps the SMA from touching the duodenum, and in most people, their is a distance of 15-20mm between the SMA and the Aorta. When I had the MRI it showed that distance between my SMA and Aorta was only 5.0mm indicating that the fat pad between the two had been lost, resulting in the SMA laying on top of the duodenum, which causes a blockage. I don't have a full blockage but it has definitely impaired the ability of food and water to be processed, resulting in things backing up into my stomach and since it can't go down it has to go up. 

This image is of the stomach anatomy and how it should look:

The image below is a diagram of what the SMA should look like and what it looks like if you have SMAS: 

If you would like more detailed information about SMA syndrome here is a great Wikipedia article that describes it in more depth: 

http://en.wikipedia.org/wiki/Superior_mesenteric_artery_syndrome

There are only a couple of treatment options for this syndrome and they include trying to gain weight or surgery. Since November 10, I have been receiving all of my nutrition through my GJ tube and unfortunately I haven't really gained any weight and it seams like my symptoms are starting to get a bit worse. Through much research, talking with many doctors, and prayer, we have made the tough decision to have surgery to help alleviate the problem. Unfortunately I will always have this syndrome but with the surgery, hopefully the symptoms will be able to go away and I will be able to eat food again with out it coming back up. 

The surgery that I will be having is called a Roux-en-y with a DJ and JJ anastomosis. This is a picture of what the surgery will look like:

What will happen is I will be having an open surgery where they will make about a 5 inch incision from my bellybutton up and then the surgeon will locate about 10 inches below the forth part of my duodenum, cut the Jejunum, then attach it to the top of the Duodenum. The cut portion of the jejunum is then attached back into the lower portion of the jejunum. This will require a 5 day stay in the hospital and at least 4-6 weeks recovery.  

Right now I am scheduled for surgery on Jaunary 22, at the University of Utah. We will probalby be staying in Utah for the next couple of months while I heal and then we will be back in Ohio. 

We are still doing some research about the surgery and trying to decide if this type of surgery is going to best solve my problem. There is no guarantee that this will totally solve my problem and I have to understand that I could go through all of this and still be vomiting. It is a scary thought but I have go forward with faith as most thing with medicine don't come with a guarantee. We will be meeting with the surgeon on the 20th to hash out all the details but I feel like my surgeon really has my best interest in mind. The first time he met with me, he took over a hour and a half to really listen and understand my problem. He then gave me my otpions and then also took the time ask other GI doctors at the University hospital if they would reveiw my case. Once he informed me that the GI doctors didn't feel there was anything else it could be, SMAS was officially my diagnosis. 

I have thought a lot about sharing this and there has always been something stopping me. Why wouldn't I want the support of those around me? I have had a lot of support from those who know but I have not shared this willing. I think it may have to do with the fact that I don't want people to know that I have struggles, I don't like the attention, and it is hard to admit that I'm sick and need help. When you look at facebook, everyones lives seams either perfect or aweful and there isn't a lot in between. To what you would see on my social media, it would seam like our lives are perfect and I need appologize for that. My life is not perfect and I'm exposing my weakness. It drives me crazy when someone givesa little bit of information as to a struggle in their life and then you don't hear anything else. So you are left to wonder what is going on with the person you care about. I get it now though, it is hard to show your vulnerable side. 

I will try harder to keep my blog up todate and to post more on facebook the real side of our life. The good the bad, the ugly and the in between because I know that there are others out there that are struggling in silences and I have learned that I am not alone. I have an amazing support group and people that care about me and I need to reciprocate with information. 

I would like to sincerly thank everyone that does know and for all the help that I have been given and for all the prayers and fasting that has been done on my behalf. I have grown up hearing people say they can feel the prayers that have been said for them but I never really thought it was possible. I was completely wrong. I have felt strength and have seen the blessings that have been direct answers to prayers. I know that my Father in Heaven is aware of my needs and that he loves me more then I recognize. This challenge is to help me grow and I have felt his love throughout this whole journey. I would not be where I am right now with my beliefs and with out all the support I have recieved.

The next few months should be very interesting and I am looking forward to getting better and back to life. My life will never look like it did before all of this started but that is ok because I am not the same person I was 18 months ago, hopefully I'm better now then I was then.