A Miracle

On Tuesday I had an appointment with my surgeon Dr. Glasgow, to go over the results of my CT scan. While we were there, he informed me that according to the radiologist my CT scan came back normal, but Dr Glasgow felt that the balloon that is attached to the inside part of my GJ-tube maybe too big and causing a blockage to my pyloric valve (the outlet of the stomach). This balloon holds about 10ml of water and that amount can be adjusted from the outside. He felt it would be worth a try to deflate the balloon a little and see if it was what was causing my vomiting. Dr. Glasgow didn't seam positive that it would work, so a gastric emptying study (it tests the motility of the stomach) was set up for the 31st.

A diagram of a G tube similar to mine.

At this point I felt it was worth a try. After everything I have been through it seamed like too easy of a fix but it really didn't hurt anything to try. As we were getting ready to leave the appointment, Dr Glasgow said he was hoping that this would work for me but if it did, I would be a first for it to work. Not the biggest vote of confidence there but I have learned from this experience that my body doesn't always act in the typical way. 

On the way home from the appointment I was still pretty nauseous and I wasn't sure if removing 4ml from the balloon was going to help. I had been extremely nauseous the whole day and even ended up throwing up quite a bit in Dr Glasgow's office. Brittany had had the day off and on our way to the appointment dropped Maia and my nephew off to hang out with her for a few hours. We ended up meeting them at Ikea, where we picked up Maia. Brittany had bought a lot of dinner for the kiddos and had a bit of chicken and frys left over, which she gave to Sean and I. Even though I was nauseous I was still hungry so I decided to try some of the french fries. To my surprise they stayed down! I ended up eat quite a few and although it probably wasn't the best food to try first, it was amazing that I didn't end up throwing them up. To this point I hadn't been able to even keep a 1/4th of a cup of liquid down and was throwing up gastric juices when I didn't eat. So to be able to eat anything and not throw it up was a bit of a shock. That evening I had some gatoraid and a couple other little things and they stayed down too. I knew the really test though would be then next morning.

In the morning, I had a carnation's breakfast drink, about 8 oz and before I would throw that up pretty quickly. On Wednesday I only ended up throwing up about an once and even that didn't happen right away. I was still a bit nauseous but once I turned my tube feeds off, my nausea started to go away. I think, because my J tube had been placed funny in my intestines, it was irritating my stomach and causing me to be nauseous. Wednesday I was able to eat and keep most of what I ate down! 

Since then, I haven't had to run my tube feeds since Wednesday night, I went out to eat lunch on Thursday (the first time in a really long time that I have been able to eat out), and I have been able get enough calories so I don't need my tube feeds. I'm still working on making sure I get enough fluids but most of that is retraining myself to know that fluids are good for me now. I been throwing up for so long  and liquids have been the biggest offenders that I now have to retrain my way of thinking and remind myself that when I'm thirsty, it is ok to drink and that it is ok to drink more then 1 or 2 ounces at a time. 

My Thursday Lunch.

All that was left when I was done! This is a big deal! Granted I probably ate too much of it because I did feel a bit sick after but I didn't throw up!

Maia and I having lunch together :)

I feel like I have experienced another miracle. I have had a few miracles happen to me since I have been sick and this is for sure one of them. I am so very grateful to have the doctors that I have. That Dr Glasgow didn't over look the size of the balloon because it's not common and it would be way too easy. He wasn't afraid to look at the easy answer first. 

These last few weeks have really been hard, more emotionally I think then physically because it is hard to be sick again after receiving hope that you might be getting better. I was doing so well for 3 week and then all of a sudden I was sick again. I had surgery to fix the vomiting, ended up have a serious complication, having a second surgery, and was doing well. The vomiting returned and it almost made it seam like everything I had been through was done in vain. I wasn't better and was facing a diagnosis of something that has no cure and I would be left living with the vomiting for the rest of my life. It was to be completely honest very daunting and a bit depressing.

It has been 5 days since the balloon was deflated, and I feel better then I have in a long time. I am able to eat and I have more energy. I feel like I have been given my life back and for that I am extremely grateful. Now I'm not back to being 100% yet as I have to watch how much I eat and my intestines are getting used to handling more food again as they haven't had to work this hard in over a year and a half. I still have a long road to recover fully from this but although my vomiting could return, I feel like, for now, I have been fixed. The surgery was a success and it has been worth it all. 

Thank you all for all the fasting and prayers that have been said on my behalf and for all the positive thoughts that have been sent my way. They truly have been felt and have helped me get through this difficult time. I have felt so much love and kindness from everyone that when I stop and think about how many people truly care about me, I get a bit over whelmed. All of this has made me realize that I have been given so much, have been so blessed and miracle do happen. 

A plan with holes

On Tuesday I met with my surgeon to discuss the situation at hand. The last time I say Dr. Glasgow, they removed my picc line and we were talking about the taking the GJ tube out at this appointment. Going from that, to being fully dependent on my tube in three weeks was a bit frustrating to say the least. Dr. Glasgow seams to be a little perplexed as to why I'm having problems especially after having 3 good weeks. 

Dr Glasgow reviewed the images from my Upper GI series and he said that he didn't think that my stomach was emptying that slowly. He thought there could be a few things that may have happened after the 2nd surgery that could have caused my stomach to be sleepy but he didn't think that they would be likely, as I'm not presenting with symptoms, except for the vomiting. An easy fix, he mentioned, would be if it was my GJ tube plugging my pyloric valve (the opening at the bottom of the stomach) and blocking the food from getting through. 

 However he does want to rule out anything that could be surgery related, so tomorrow I am scheduled to have CT scan done at 7:00 am. Way to early for my liking but that's when they could get me in. If the CT scan comes back normal then I will be scheduled to have a gastric emptying study done to see how my stomach is emptying. Dr Glasgow doesn't want to label me with Gastroparisis if he can help it. If my gastric emptying study comes back normal then I will be back to square one and will work with my GI doctors again. 

While I was there they did place what is called a Midline IV. This is shorter then a PICC and can only stay in my arm for 4 weeks tops. I will be back on IV fluids 3 times a week to help me stay hydrated and minimize having to go to the hospital. 

There is a lot up in the air right now and we are back to a point where we just don't know what is going on. I have had to really deal with the emotions of having to deal with this again after having hope that I would be able to put it behind me. Having the midline placed really made it hit home that I'm still sick. The reality has sunk in that I may have to deal with this for years to come and I am going to have to learn how to find a new normal, with a feeding tube, PICC line and vomiting if I eat anything. Ideally, tomorrow the CT scan will show something and we can fix this problem but I can't get my hopes up because history shows that most things come back normal. I'm praying for a fix but preparing for the long haul. 

No matter what the outcome is tomorrow, I know that I am blessed. I live in a time where I can have access to medical marvels to keep me alive. While my GJ tube is a pain, it is keeping me alive. I have good doctors who really do care about me and an amazing support system behind me. I'm blessed to know that I am not alone and there is happiness in my future, I just have to make sure to find it. 

8 Months Old

This little munchkin turned 8 months old while we were in Baker and I had to go get some pictures of her   out side. 

She has started to eat her solids really well and loves to have Nona feed her. She is really good at army  crawling and moving where she wants to go. She now has her two bottom teeth both of which have come in during the last two weeks. She Is a decent sleeper but wakes up a couple times at night to eat. She is a pretty happy kid and love to watch here older sister move around. We think she is going to have red hair eventually. It seams to just be starting to grow in. She also love to put things in her mouth, especially if it is a cord, shoe string, or pull cord.

Here are some pictures from our little informal photo shoot. 

It is hard to believe that she is only 4 months away from being a year old. I feel so blessed to have her in our family and look forward to the months to come. 

Getting away

After the test, I needed a break. Although I couldn't escape the vomiting, I could get out of Utah and enjoy a change of scenery. We had already planned on visiting my parents and had put it off to have the testing done , so on Saturday morning we hoped in our rental car and headed up to Oregon. It was just what we needed. 

We made it to my parents house at around 5:30 which was pretty good timing as we only had to stop once. The girls were pretty good until we got to Boise and they were both so tired but Maia didn't want to sleep so instead of sleeping she kept yelling, which in turn would make Kassia cry. I ended up having to sing to them for 30 min to get Maia to calm down and go to sleep. That experience showed me that sibling teasing starts young! 

There is something special about going home. I don't think I would ever like to live in Baker again but it feels like home every time I go to visit. 

Saturday night I was so tired, I went to bed early and didn't wake up till about 12:30 pm Sunday afternoon and I still felt tired and not well. Come to find out I was dealing with dehydration. Sean ended up taking me down to the Baker Hospital to get some IV fluids and luckily the staff there were pretty understanding of my situation and were willing to get me the hydration I needed with out running a bunch of tests. 

Sean hanging out with me while my IV bags were running.

I ended up needing 4 bags of IV fluids and the nurse kept commenting on the color or lack of color in my face each time he hug a bag. By the end he said I didn't look as pale. When we first got to the hospital, there wasn't anyone in the waiting room but the emergency rooms were full, so we had to wait for one to open. Just as we thought we were going to get in, an ambulance showed up and so I had to wait longer. I have to say, we were only in the waiting room for a little bit and then it started getting really busy. It filled up pretty quick and made me glad we went when we did. 

Although I was there for about 4 hours, it was worth going because I did feel a lot better afterwards. It was nice to return to my parents house not a zombie anymore and head into my vacation week feeling better. 

Unexpected Blessings

A bit has happened since the last time I posted and I'm not quite sure where to start, except that I have experienced many unexpected blessing. Looking at all that has gone on in the past few weeks it is hard to find the blessings sometimes but a dear friend of my reminded me that even though this is hard right now, my trial is a blessing and it is blessing the lives around me. 

The day after I got my PICC line removed, I started vomiting again and has progressively gotten worse. On Monday the 2nd I had an appointment with my GI doctor and he stated that he wanted get me in for an endoscopy to move my J tube out of my stomach and back into my small intestines. On Wednesday I went in for my 7th endoscopy and they were able to put the tube where it was supposed to be. Dr. Kawa (my GI doctor) said that every thing looked good and he didn't see any cause for concern and my anastimosis (where they made the connections in the intestines) looked good. So he ordered for me to have an Upper GI series with a small bowel follow through completed. 

I was able to get the test scheduled on the following Friday. 

I ended up spending a few hours in this room as it takes time for the barium that I swallowed to travel through the intestines. 

This is the fluoroscopy machine that is used to complete the Upper GI series. 

It started off with me up right and they lowered the table into a laying position. I was there for about 3.5 hours and the whole time I was nauseous and vomiting. The barium is like swallowing vanilla flavored toothpaste. It is so thick and heavy! After the test was over, the PA talked to me about what had been going on. He said that although the small intestines looked good my stomach seamed to be holding onto the barium. For being there 3+ hours I had more barium then there should be retained in the stomach and he suggested that my GI doctor order a gastric emptying study. 

At this point, I was glad that they found something but my stomach not emptying could mean Gastroparisis which doesn't have a cure and could be something that I could be dealing with the rest of my life. The thought of having to deal with this for the rest of my life is something that is daunting but I know that we will get through this. I have been so very blessed to far and I know that what ever the future has in store for me, we'll be able to handle it. 

1 month

It has been one month since my second surgery and I seam to be healing from the surgery alright. I had a little bit of a scare last week as my scar had turned really pink and there seamed to be a lump developing under it but it turned out to be nothing to worry about, which is always good but still make you feel silly for having the doctor check it out. On Tuesday, I had another post op appointment and it seamed to go well. After almost 7 months of having it in my arm, my PICC line was removed. It is so nice to have it gone but I sometimes feel like I am missing something. It was my life line for those months and I'm grateful that it worked so well for so long. My doctor's told me many times that they were really surprised that it still was working and was good as it was and that it lasted as long as it did. I attribute it to my good veins. I have another appointment with my Surgeon in 3 weeks and if everything is going well at that time I might get my GJ tube removed and be tubeless. That is the goal.

In this last month, I have had the ability to enjoy my girls. I have been pretty much home bound for the most part, except for visits to the doctor and a random trip to Walmart. Here are some pictures from this month:

This little one has started to really like her toys and show her cute little personality.

Aunt Brit was hanging out with Kassia on the floor and Kassia was completely mesmerized by what ever Brit was looking at on her phone. 

She has discovered that she can feed herself her bottle and if we leave her bottle on the floor, she will wiggle over to get it and feed herself. 

Maia also likes to get involved in the feeding process, granted her attention span is very short but it is sweet anyway.

 

Sean hanging with his two girls. 

Sister time! 

Maia was really good with playing with Kassia and it was so cute to see them play together.

 Kassia turned 7 Months!

She has become quite the mover and shaker. She is a getting pretty good at army crawling but still uses her head to leverage her way around things. 

This is her favorit place to crawl to. 

Kassia is such a sweet heart and love to watch her big sister run around. She is a decent sleeper but has recently started waking up hugery in the middle of the night. I guess it's time to up the solids intake. Her hair is also starting to grow in and it looks like we might have a red head on our hands. I still think she looks so much like Sean. 

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: