One constant: Change.

I have been sitting here for a while trying to figure out how to start this post. So much has been going on the last couple of months. It is hard to know where to start so bullet points it is:

• Botox was a success but it only lasted for 4 weeks. The surgeon said that it could last anywhere from 3 weeks to 6 months. Unfortunately for me it started to wear off at the 4 week mark (April 14thish), granted it was wearing off slowly but that is about the time I started to throw up again.

• April 11, Sean left to go to conference in South Carolina, My brother and my mom came in that day to visit. My brother only stayed the night and was off the next morning my mom stayed for 10 days to help while Sean was gone and Maia was out for spring break.

  

  Fun Uncle Brad

  

  Skyping with Uncle Brad's boys. good cousin time.

  
  

  

  Although these are out of chronological order we were all sad to see my mom leave.

  

  Kassia wouldn't stop crying that Nona was leaving.

  

  Maia did a little bit better with her goodbye's

• April 13th, our engine in our car blew and $2300 later we had our car back.

  

  I took the city bus to get to my Gastric emptying study since our car was in the shop but I just thought the trees were so beautiful.

• April 14th, I did another gastric emptying study and it came back improved. 

• April 19th My mom, the girls and I went up to Michigan to see my cousin and family. The Girls loved their goats and chickens.

Loving some goat time

Sweet cousins!

• April 20th, I met with my surgeon a week later to go over everything and he gave me 4 options: 1. Don't do anything, 2. Continue to have botox injections (problem is I would need them every 2 months and the longer you use them the less likely they are to work), 3. Have an endoscopic procedure, called a Per-Oral Pyloromyotomy (POP) to cut they pyloric valve and make it permanently open (I'll talk more about this in another post), 4. Have the Pyloromoyotomy done either laparoscopic or through an open surgery. 

• Because of the relief I felt and the improved emptying of my stomach, we have decided to move forward with the POP procedure and I am scheduled to have that done on June 6th.

• The end of April first part of May, I had my very good friend Katie come visit me from Texas! It was a wonderful visit and I love friendships where you can pick up like you haven't spent any time apart. Maia particularly liked Katie.  

  

  Maia spent a good hour plus reading with Katie

  

  When she got fidgety they did exercises

  
  

  

  We had a chance to go to the zoo and the girls were tired but Katie and I enjoyed our time there.

•  May 5th Sean and I took advantage of a deal OSU was doing for students at Cedar Point, which is an amusement park. We had a baby sitter for the kids and hoped the weather would get better. We ended up getting rained out but we gave it our best rode the 4 of the 7 rides that were open. Luckily we can go back any day this season since it was such a bust. 
  

• Since most people around us know it is time to let everyone else know. In March Sean accepted a full time tenure tract teaching position at the University of Wisconsin Parkside. He will be starting there in August so we have been spending the last couple of months taking trips up to Wisconsin to look for housing.

• We were able to stay at Sean's Aunt's mothers house and had a fabulous time with Sean's Aunt Debbie and the Girls love her! 
  

• On May 8th we made a trip to the Racine/ Kenosha area and were able to put an offer down on a house. Our offer has been accepted but since it is a short sale we have to wait for the bank to approve the offer. So the earliest we will probably find out if we can get the house would be June 14th. So we are hopeful but not getting too attached because there is no guarantee it will go through. 
  

• On May 11 I ended up in the hospital due to an Supra-ventricular Tachycardia (SVT) attack. My heart was racing about 240 beats per min and I couldn't get it to slow down. By the time I got to the hospital I was having a hard time breathing and my blood pressure was really low. They gave me some medicine to help my heart restart and it did the trick. They think the attack was caused do to dehydration but the interesting thing was I didn't feel like that dehydrated, and I know how my body normally reacts to dehydration. They kept me overnight to dehydrate me and keep an eye on my heart. I was discharged thinking that I was going to have to have surgery to fix the SVT before I could have my surgery to take care of my vomiting.

  

  Poor Kassia was there for the whole ER trip and luckily she is too young to really understand what was going on. She like seeing all the similar medical equipment that she used on her when she goes to the doctor. This was taken then next morning when they came to visit.

  

  The cardiologist drawing as to what was going on with my heart.

• On May 17th I met with a cardiologist who specializes in Cardiac Electrophysiology who explained that SVT's aren't dangerous but that unless I want to stay on medication for the rest of my life, I should get it taken care of through an Electrophysiology Study (EPS) and Ablation. This would in essence stop my SVT's from happening. I guess I have dealt with SVT's for a while it just hasn't been too bad and before I really only had a problem when I was pregnant. I started having more episodes since having the Botox and this last episode has us considering having the EPS done. 

  

  Waiting for my appointment.

• May 19th Kassia had her 8 month Cardiology appointment and she is doing wonderfully!! She is growing and as sassy as ever. She doesn't have any restrictions and doesn't need a follow up for another year! This day Maia also graduated from Preschool. She has had such a good time at head start and will be missed. Next year she will start a 4K program in Wisconsin.  

  

  Kassia helped put the leads on for her EKG

  

  She also helped take them off. She loved the nurse but then wouldn't say a word once the doctor came in.

  

  Maia was really excited to have Kassia and Sean and I at her end of the year party.

  
  
  
  

• Last Sunday Sean and I were both released from our church callings which we have loved but are looking forward to being able to focus on all the change going on in our lives.

• This week Sean went to Georgia for a Coaching Conference and was gone for about 4 days. We were very glad to have him back.

•  Throughout all of this Sean has been working really hard to finish his dissertation. He has to have his finally draft to his committee but he is trying to get it pretty much finished before I have surgery so he can focus on the family for a few days before he has to start prepping for the class he is going to teach this summer and prepping for 4 new classes he is going to teach this fall. 

I think that pretty much sums up all the crazy changes that have been happening in our life. I'm sure I have missed something but this should give you an idea as to what has been happening in our lives. I will hopefully post next week with more details about the surgery on the 6th. 

Here are a couple of pretty cute pictures of my girls that fit somewhere in the timeline above: 

A few less wrinkles and a bit more energy

Many of you have wondered how I have been doing since I had my procedure done on the 15th, so I figured it was time to give a recap of the last 12 or so days. 

 

I just had to start of with this cute face because well you can never have enough of it and I got a few extra snuggles before she headed off to the neighbors house to play, while I headed to the hospital. 

 Here I am all prepped and ready to go for what looks like surgery but there was not cutting of flesh during this procedure. It was just my 16th endoscopy done under general anesthesia. At first I didn't think they were going to let Sean come back but once I had all the tubes and monitors connected and had answered all the "do you feel safe at home" questions, they let him come sit with me until they rolled me back.

After the procedure was done and I finally woke up from the anesthesia, the surgeon came in and talked to me about how everything went. I have to say, usually at this time I am still fairly groggy and although I can remember most of what is said there are parts I miss understand, however this time, the anesthesiologist who did my anesthesia, did a fantastic job of giving me the right amount of medicine. I woke up feeling fairly clear minded and not nearly as groggy as I usually do.

 

 

 

The light blue arrows show the stenosis and the green arrow shows where the opening to the pylorus is 

So Dr Meara, the surgeon, said that everything looked pretty good and that my pyloric valve actually opened up pretty well. He didn't do a balloon dilation as he said that it wouldn't have done any good and proceeded to inject the Botox. He said he wanted me to contact him weekly with how I was doing and to follow up in 4 weeks. The interesting thing though is that in the report he sent home with me, he noted that I had developed mild stenosis around the Pyloric valve which he didn't mention to us after the procedure. It is something I'm going to ask him about when I see him as from the research I have found it can become a cause of blockage to the stomach. It is pretty rare to see in adult but my history of vomiting can be a cause of it. I also find it interesting that this is now showing up, as when I had an endoscopy in February at the Mayo clinic there was no mention of this.

 After I was cleared to go home, I was pretty alert and after about an hour or so I felt pretty good. What ever concoction of drugs the gave me left me feeling great. I didn't really have any pain and I wasn't too tired so after I got some post procedure snuggles from Kassia, I decided that I was hunger and was going to try eating. So I started with some fruit snacks and they went down fine so then I started raiding the kitchen. Not really but since I had been on a liquid diet for two days prior I was ready to eat something solid. So I had some bread and then some crackers and graduated from there. I also drank probably 16 ounces over the course of a couple hours and to my amazement, I wasn't nauseous, I didn't have any urge to vomit and I kept it all down! It was amazing to see such a noticeable difference! I could eat but most importantly I could drink and it was not coming back up!

 That night I helped put the girls to bed and I just had to document the way that Maia sets out her clothes for school the next morning. It doesn't really show in the picture but she has greenish pants and a green shirt as I told her that the next day was St Patrick's day. Unfortunately for her I didn't realize that the next was actually just Thursday and not St Patrick's day Friday till after she was on her way to school the next morning. I blame it on the procedure but I really believed the next day was Friday. 

Anyway after the girls went to bed and I was resting on the couch, I think the medicine that they gave me must of warn off because I started to not feel very well at all. I started to become very nauseous and started having quite a bit of pain under my right rib cage and back. I also started to notice that I was burping a lot. Before the Botox, burping would usually be closely followed by vomiting but not in this case it was purely just air. Although I was uncomfortable, I just turned my heating pad on and went to bed. In the middle of the night I woke up in quite a bit of pain. I sat up and so much air escaped my stomach I thought I was going to wake up the girls in the next room. I was able to go back to sleep but around 6:30 in the morning I woke up and the same thing happened again, except this time I was so nauseous that I ended up throwing up. By that point the girls were up so the day started. Luckily Sean was able to take the day and be home because I was miserable. 

The next few days anything I ate caused me to be so uncomfortable. I was having terrible heart, nausea, migraines, and a huge increase in abdominal pain. By Saturday night I was curled up in a ball contemplating going to the ER because the pain was so intense. Luckily the pain med's started kicking in I was able to get some rest. The next day I just avoided eating anything so I could get through church and not be miserable. I really was at the point that I would have gladly taken the vomiting back to get out of the misery I was experiencing.

 I don't normally show off my stomach but this kind of shows the bloating I was dealing with. Usually I have a fairly flat stomach and it was poking out so much that Maia asked me if I had a baby in my belly. She has lately been asking me if she can have a baby brother. So I had to explain to her that I was just full of gas and not baby. 

By Monday a very sweet friend suggested that I take gas-x and that mixed with enzymes and probiotics, I was able to finally start to get some relief. Tuesday I started to feel better and the bloating started to go down. The problem is that food would normally sit in my stomach, breaking down in stomach acid,  for a little while to before moving out but with my valve being stuck open, food is able to move right out of my stomach and my intestines have a harder time digesting. The bacteria in the intestines produce gas when they digest food so if they have to work harder, they produce more gas, or in my case, enough air to fill up a hot air balloon. 

 

 On Tuesday, at 9 o'clock at night, Maia woke up throwing up and then by midnight Kassia woke up throwing up as well. Neither of them had fevers just complained of their tummies hurting. That day I had fed the girls a smoothie made with Acai berry juice and then for dinner they had some tomato soup that needed to be eaten. Sean and I ended up taking shifts with them through the night and the next morning they were done throwing up. In the afternoon, Maia wanted more smoothie so I made her one with the Acai juice. Sean ended up drinking a good amount of the smoothie too. Well Maia threw it up with in about 15 min and then threw up again 20 min later. Later that night Sean started puking his guts out. In the 12+ years that I have known Sean, I have never seen him vomit that much. It was impressive but lead me to the conclusion that we were dealing with a bought of food poisoning. The Acai juice got dumped. What I find ironic is the one person who throws up the most in this family was the only one who didn't throw up those days. Thank goodness!

By Thursday the girls were feeling better and although their appetites were lacking their imagination was not. They were playing all sorts games with their play dough.   

Through all this I was grateful I was starting to feel better. By Saturday morning, Kassia woke the whole house up with her screaming, since Sean was still recovering a bit and was going to try and play basketball later, I got up with the girls. For the first time in a long time, I woke up feel good!  I had energy. It was amazing. Since I felt good and the weather was nice, I decided to take the girls out for a walk. They loved playing in a field near our house and it was wonderful to be out enjoying it all. 

Kassia and I at the Stake center watching Sean play basketball

 Maia was not really interested in watching Sean play so she decided to play teacher to about 7 kids probably 3 years old and younger. The amazing thing is that she held them captivated for over 15 min. The other parents couldn't believe that their kids were just sitting there listening to Maia babel. It was pretty impressive.

Sean is on the far left, running.

 

And finally to last night. We had a tornado warning and headed down to the basement right before what should have been bed time. Luckily they weren't already asleep. The girls thought it was so funny that our dog Parley kept looking at me underneath the bus that I was sitting on. 

To wrap this post up, I am feeling better and am very grateful for the way I am feeling. I also know that the Botox is temporary. I don't know how long it will last but I will take it for as long as it does. When it does wear off we will look at our options but it is a relief to know what the problem right now is and that has been most the battle is just figuring out what is wrong.

Botox?

Tomorrow I might be getting Botox injections tomorrow but not for what you might think. The current theory is that I am suffering from a Gastric Outlet Obstruction, or in other words the pyloric valve, the stomachs outlet, may not be dilating correctly and causing me to throw up. For most people they deal with ulcers or they a cancer of some kind that can cause the blockage. For me they think it may just be my pyloric valve not functioning correctly.

Image found here

So a couple of options for me is to use a balloon to dilate the valve and see if stretching it out can help. The other option is to inject the muscles around the valve with Botox. This would cause the muscles to be paralyzed and the valve to stay open. The hope would be that this would allow the food to pass through into the small intestines without much resistance from the valve. 

Image found here

I'm not sure exactly if the surgeon who will be doing this procedure is going to start with the balloon or do the Botox. I will talk to him more about it before we get this underway. I have to be at the hospital at 11:15 am and it probably wont start till 1 or 2. Usually this procedure is done with a twilight sedation in the endoscopy center but my surgeon is a bit worried about the complexity of my case, so he is going to do the procedure under general anesthesia, in a surgical suite. I think it is a bit of an over kill but better to be safe than sorry. 

Since this is being done under general anesthesia, I will probably be out of it most of the day. I have learned it takes me a while to wake up from the anesthesia and it leaves me pretty groggy. I will update everyone when I can.

The Future

I had a very wonderful experience today.  I met with a new surgeon today, through the OSU system. My GI Dr works closely with him and had filled him in previous about my history and he agreed to take my case. My GI Dr has been really pushing for me to have a roux-en-y gastrojejunostomy done. Which would be a major operation. I was really nervous about this appointment, especially after my experience of being dismissed by the Mayo clinic.

To my surprise, the appointment went amazingly! He listened and really showed genuine concern about me. One thing that was amazing is that I told him about how I was diagnosed with rumination syndrome (RS) and how in October, things had started to changed in my vomiting. RS isn't well know or studied so I expected him to dismiss my concern about the change. I said "I don't know if this makes sense?" He stops and said that it did make sense because he himself has delt with RS since he was 8. I was blown away! He said he hadn't ever treated anyone who had been diagnosed with RS but because of his personal experience, he understood how the change would be concerning. I was blown away! What are the odds? 

Anyway, he told me that he is very concerned about the complexity of my case so he is going to reach out to the other surgeons in his group to help him come up with a plan. He doesn't think there is a magic fix but he is hopeful for a better quality of life for me. 

Two weeks ago, I went to the Mayo clinic and although some positive things came out of it, I mostly left feeling pretty disheartened. I didn't have a plan and was left wondering what the next step would be. My husband and I both felt we needed to go to Mayo clinic, so after getting home, I was left wondering why I even went. 

Well today, I now understand a small portion of why I needed to go. Throughout this journey I have always questioned what my Drs at OSU have been saying. I was always looking for an answer and I was willing to look wherever I could to find it. I felt spoiled by the Drs I had in Utah and all they did for me. So coming back to OSU and having problems again I kept thinking that I needed to find someone else to help me. I went to the Mayo clinic hoping that they might hold the key to my getting better. That they might be able to pull their resources to see something that was missing. In the end they didn't really look at my past testing and said that my anatomy looked great. I realized that they were looking at my health like a snapshot, when I needed them to see it more like a movie. They didn't really know my history and the little details were easily dismissed. 

I have recently come to accept the fact that my health history is complex but over this past year I have dismissed that complexity. I live with it everyday and feel like it shouldn't be so hard to understand. I have learned that what might be normal for someone else may not be for normal for me. It is those little details that get lost when you just take a snapshot. I haven't given the dr's here the credit that they have needed in dealing with my care. Have they made mistakes or missed things? Yes and that has been part of what has pushed me to look for answers elsewhere. Today, however, I learned the benefit of being in a place that knows your history and can look at the little details. 

I don't know what the plan is for sure but I feel confident in the surgeon and that he will work to help me feel better. He didn't dismiss me and didn't promise me that I would receive complete health again. He did however help me feel at peace about where I am right now in my health journey. He will be an integral part of my care the next few months and it will be interesting to see what happens. 

Going to the mayo clinic and seeing what else was out there, has helped me appreciate what I have right here at home. I don't feel like I need to be looking anywhere else for answers right now and that helps bring me peace, which sometime can be one of the hardest things to find when dealing with a chronic illness. 

Continuing Care

Life is an interesting thing. I have ever yet to figure it out but one thing I know is that it is constantly changing, for the better sometime and at others for the worse. But one thing that never changes is that time keeps moving forward. 

Over the past few months, really since October, my health has changed. This summer I was doing fairly well. I delt with quite a bit of pain from my feeding tube but I had it removed in September because it hurt to much to even use it. No point in keeping a defective piece of equipment especially when it is attached to the body. Getting that removed was really nice. Although I have had problems with it healing ever since it was removed. 

You might recall that was around the time of kassia having surgery. That was a very stressful time and I noticed that my appetite had decreased and I was throwing up a little bit more. Fortunately after Kassia's surgery was over, the vomiting subsided and things seamed to be back to more of a normal pace. 

A few weeks later I noticed that I was starting to throw up more again and I was starting to develop quite a bit of pain on the right side below my rib. My appetite was decreasing and nausea was increasing. I started to loose weight and get dehydrated. At the beginning of November I found myself in the hospital for a couple of days to get IV fluids and get back on track. 

I realized at this time that something different was going on. This wasn't my usual type of vomiting. It was forceful and at time really foul smelling. I started getting IV fluids through my PCPs office which has allowed me to stay out of the hospital and get by. 

I was also having problems with the jtube hole not closing so I had met with a surgeon who suggested some testing to see what was going on with it. 

In December I had an appointment with my GI Dr and explained what was going on. I was afraid that something might be wrong with the anastomosis (connection between the intestines) that was created 2 years ago to address the SMA syndrome. She agreed that something was going on and wanted to have an endoscopy done and also have an upper GI series with a small bowel follow through done. 

The next Monday I went in to have the endoscopy done. They ended up having to give me extra sedation because I wasn't falling asleep. When you get an endoscopy, usually the Dr and staff do a time out, make sure you are who you say you are and they know what procedure they are doing, after that they then give you the sedation meds and put this plastic thing in your mouth that protects your teeth and helps guild the endoscope. You can't really talk with it in your mouth. So my GI Dr was talking to the nurse about her shoes and he nurses shoes and I remember thinking they must be some great shoes so I leaned over the gurney and looked at her shoes and chuckled because they weren't anything spectacular. My GI Dr looked at me and then turned to the nurse and asked why I wasn't asleep yet. He nurse started scrambling and said she had given me the same dose I had gotten before and my GI said to push a bit more and the next thing I know I was being forced awake in the recovery room. 

My GI Dr explained what she had found but I was pretty out of it. Luckily Sean was there to get the information. At the time she was saying that there was something wrong with the shape of my stomach and the pyloric valve (the stomachs outlet) there was a sharp angulation causing it to be very difficult to get out of my stomach. She said I would need to see a surgeon but we would get the upper GI series done first. 

So I went home and literally slept the rest of the day. The amount they gave me sure knocked me out. The following Wednesday I had my upper GI series done and it showed that I had retained fluid in my stomach, even though I hadn't had anything to eat or drink since 10 pm the night before. It also showed a bit of a delay in the barium passing through the pyloric valve. It also confirmed that the shape of my stomach was not right. 

So I went back to get surgeon to see what he had to say. I went in think that they should be able to do a simple laproscopic procedure to release the scar tissue and to tack my stomach up. I was a bit blindsided when the surgeon started talking about a major operation and doing what is called a roux-en-y gastro jejunostomy. In essence they would cut my intestines and hook it up to the bottom of my stomach to create another outlet. 

I have done the major surgery before and I wasn't about to jump onboard with this. The surgeon wanted me to have a gastric emptying study done but it didn't make sense for me to do that. Reason being is that the gastric emptying study shows the rate at which the stomach empties. Well if I am dealing with a gastric outlet obstruction, the test would come back delayed and could be misread as having gastroparerisis.(where the digestive movements of the stomach are impaired). So I talked to my GI about it and she agreed that it might not be the best test. So she was going to talk to a couple other surgeons about my case. 

At this time I also decided that it would be wise to get a second opinion. This was all around Christmas time, so things seam to slow to a crawl. After debating as to where we should go, I decided to send my records back to the surgeon I saw in Utah and I was also encouraged to try to get seen by the Mayo clinic. I applied online to the Mayo clinic and the next day they called me to do a screening interview. It was going along really well until we got to the GI specific questions. The lady doing the interview asked me if I take any prescription painkillers, I said yes, and then she said "We are sorry at this time we do not feel like you would be happy with your service here and can't help you." 

I was shocked. I asked if it was because I on painkillers and she said yes. I said there isn't anyway for me to be seen there and she said I would have to go off of the painkillers but there was no guarantee. I was a bit confused and crushed. The next day I called back to get clarification as I couldn't believe that they wouldn't see me because of the painkillers. I was transferred to someone in the GI department and they said the gal doing the intake was filling out a triage form which if you are on painkillers, excludes you from being able to be eligible to be seen. So to be seen at the Mayo I had to go off of the painkillers and then get a referral from my dr. I can understand that reasoning and so I reached out to my GI dr to put in the referral and she said she would but then went out on vacation for a month. She wasn't going to be returning messages till she got back so I decided to reach out to my primary care physician and see if he would be willing to put in a referral. 

My PCP said he would and he started the process, which turned out to be quite the process. It ended up taking a month for him to be approved. By the time he was approved to be a physician, he went on vacation and my GI dr was back in. Anyway after a lot of back and forth, I finally got referred to the GI department. I called a week and a half ago to see if they had gotten my records, (they said that once they got them it would take 7-10 business days to process them and see if they would see me). When I called them they asked if I was calling about my appointment. My appointment? They said yes your appointment on April 7th. I was excited to have an appointment but April was too far away. I asked if they had a cancellation list and the GI department didn't and I would just have to call to see each day if any appointments had opened up. I told them they would be hearing from me. 

I called the next day and the gal said that they had an appointment open on the 31st. I was super conflicted because Sean was supposed to be out of town that day. I asked if they had any other cancellations and after a long minute she said they had another opening on Feb 6th. I was so excited because that was perfect! I took it. 

Tomorrow morning I meet with a GI Dr at the Mayo clinic and as of right now, all I have is one appointment. I flew into Rochester Minnesota today and my wonderful sister picked me up and is going to take to the appointment tomorrow. 

It has come up quickly and I know this is a very long post but I wanted to share what was going on and if you see pictures you know why I am at the Mayo clinic. I am so very grateful for everyone's love and support and I will try to keep you updated as to how everything goes this week!

Kassia's Heart

When I was about 18-20 weeks pregnant, we went into have our anatomy ultrasound done with Kassia, and at that time we found out that something wasn't right with the development of her heart. We had to go back couple months later for a fetal echocardiogram to determine the severity of the defect and what her delivery might look like. On May 27, 2014 we were told that she has an Atrioventricular Septal Defect (avds or Ostium Primum). Her specific heart defect doesn't effect the ventricle much but it does effect her her left ventricle valve. She also has a small hole higher up between the atrial chambers.

Ultrasounds from February 2014 

Fetal Echocardiogram May 2014

Right after she was born they had to spend a little extra time clearing her airways and get her to breathe.

 

They had me hold her for 2 hours skin to skin (without feeding her) to help regulate her breathing and her heart beat.

 She had to wear a heart rate monitor for the first day but really all in all her birth couldn't have gone any better and the problems she had, any newborn could have had.

They did an echocardiogram while she was in the hospital and then referred us to see a cardiologist in a few weeks.

Kassia at her first cardiologist appointment. They had to use the smallest blood pressure cuff I've ever seen and Kassia hated it. They also did an EKG which she tolerated a lot better.

After this appointment the Dr said he wasn't to concerned about her heart and to come back in 3 months for a sedated echocardiogram. He also said that we would just keep an eye on it for the next year or so and go from there. 

Well, life got really crazy for us around that time and that is when we ended up in Utah for 6 months. Needless to say but Kassia's echocardiogram was postponed till we got back from Utah. 

At that time they told us that they she was doing really well and we would wait a year, do another sedated echocardiogram and then probably recommend her for surgery. 

Fast forward a year, plus, and we get to July of this year. We went in the beginning of July and they gave her some medicine to make her sleepy so they could do the echocardiogram. Instead of making her sleep, it made her more like a drunk 2 year old. I wish I would have been able to take a video of her because she was pretty funny. She would just point at things and start laughing. Since we couldn't get her to sleep and they needed really clear images, they cancelled the echocardiogram and scheduled one to be done under anesthesia.  

 So we got up bright and early on July 22nd, and headed over to Nationwide children's hospital for her appointment. She was pretty good even though she wasn't allowed to eat or drink anything before the appointment. 

 

 She loved the yellow pajamas and she even got to pick out the flavor of her face mask. They rubbed a cherry smelling cream on the inside of the mask and since she played with the mask it got all over her hands.

She tolerated the anesthesia really well but was pretty grumpy when she woke up.

She just wanted to be snuggled.

 

She got to pick out a little toy for being good and that made her day, well along with being able to eat again. 

After her echocardiogram, we went to go see her Cardiologist, Dr Wheller. He then told us that it was time for her to be presented to the surgical team for surgery. Her heart hadn't changed much but since she was having troubles gaining weight, it was time to get the holes fixed. He said that she would be assigned a surgeon later on the next week. 

The next week received a call from Dr Wheller letting us know that surgery was indicated and she had been assigned a Surgeon. We got a call from the surgeon's office a few days later scheduling her surgery. 

The beginning of this month, we met with her surgeon to go over all the details of the surgery. Because of the type of holes that she has, they are not able to repair them through a catheter, they will have to go in and do open heart surgery. 

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 Her AVSD follows more of the pattern of a partial or incomplete AVSD and it effects her Mitral Valve but not her Tricuspid. This means the hole is in such a place that they will have to use a patch from the pericardium (the sack in which the heart sits in) to help close the hole. The hole she has father up in her atrium will be able to be closed with just a few stitches. Also the valve repair work will also only take a few stitches to correct.  

She will be put on a heart and lung bypass machine and her heart will be stopped while they work on it. the surgeon said that the surgery will take about 4 to 5 hours to complete. They said with her type of heart condition they should be able to do the surgery without needing a blood transfusion and that the risk of complications is very low. Once the surgery is over, she will spend about a day in the ICU. Once all her tubes are removed and she is stable, they will then move her to the regular floor. If all goes well, she should be in the hospital for 3-5 days.

Kassia's heart is functioning really well, all things considering, and most people wouldn't even know she has a congenital heart defect by just looking at her. She is very active and other then her weight is developing right on tract. On the inside, however, she is starting to show heart enlargement and the heart is starting to develop slightly lopsided. We could wait a few years before having her surgery but by doing the surgery now, any heart damage that has been done is reversible and since she is little her recovery should be a lot faster.

On Friday Kassia had to have her Pre Admission Testing done to make sure she is ready for surgery. 

 We got there around 9:30 and they had us meet with a nurse to check her weight, height, blood pressure and temperature. All checked out perfectly and she even weighed the most she ever has. The nurse then came in and explained everything that was going to happen for her surgery, what to expect and some in's and out's of what would transpire. It was really nice to talk to the nurse as she gave me a different perspective on things then the surgeon did and I think gave me more of an idea as to what our hospital stay would look like.

 Since Kassia has to stay sickness free for the surgery to happen, I chose to carry her around on my back to help eliminate contact with the germs of the hospital. While we were there they gave us an ointment to put in her nose twice a day that has been proven to help reduce sickness. She doesn't care much for it but I'm glad for the extra measure to keep her healthy.

After we were done with the nurse, we were sent down to radiology for a chest x-ray. They had me wear a lead vest and hold her while she sat on a chair to get the x-ray done. She sat so nice and still while they quickly took the x-rays. Afterwards, the x-ray tech let her pick out a couple stickers, which totally made her day. 

We then headed over to have her blood drawn. I was nervous about this for her as I didn't know how she would react to it. The last time she had had her blood drawn she had been sedated for her echocardiogram. She was the perfect patient! She sat on my lap and only whimpered a little when they poked her with the needle but then she was distracted by the blood coming out of her arm. It was like she was fascinated by what was going on. The phlebotomist was amazed at how well she was doing and couldn't believe she sat so well. Kassia got to pick out a band aid (a despicable me one) and then asked if she could have the containers the blood was in. That gave us a good chuckle. I was relieved that went as well as it did. 

On our way home I called Sean to let him know we were coming home and Maia really wanted to talk to Kassia. I asked her why and she said that she wanted to make sure Kassia was alright because she has surgery. I assured Maia that she hadn't had surgery yet and that we were coming home. Maia then said "oh good! she is good!" Then promptly gave the phone back to Sean. Maia has been really sweet about all of this and it does my heart good to see how much she loves and cares about her sister.     

Kassia is scheduled to have open heart surgery on this Wednesday, the 28th. We have to be at the hospital around 6:30 and her surgery should start around 8. As of right now she is the only one scheduled for surgery that day, so the surgeon's focus will all be on her. 

Both Sean's and my parents are flying in on Monday to be here for the surgery and to help out with Maia. It will be so nice to have them all here and to have the support while going through this time. We have been very blessed with all the love and support that we have received over the past few years. We have chosen not to share about Kassia's heart until now for a few reason that I wont go into but I want all who read this to know how much I appreciate your love and support. I am hoping to keep everyone updated as to how the surgery and recovery goes through Facebook and daily blogging. Also thank you in advance for your thoughts and prayers for Kassia.   

Changing of a feeding tube

I'm A little over a month ago, I had an incident that resulted in my feeding tube falling out. I have had lots of questions about what the dr's do when something like that happens. I thought it would be best to write a post about it and share some pictures. Some of these pictures may be a little unsettling to the stomach so if you have a weak constitution, you might want to skip this post. 

My feeding tube is called a Mic-Key low profile feeding tube, other wise know as a "button". This tube is held in by a balloon that is inflated with water after it is inserted into the abdomen/Jejunum. If the balloon pops or losses it's water, it can become dislodged from the abdomen and the hole that it goes through will start to close. This hole/stoma/tract can start to close up within about an hour of the tube being removed. 

On a Tuesday night I went to bed and hooked up my feeding tube bag of water and then went to sleep. Around 3 am I was woken up by a wet feeling that was running down my side. Come to find out I was drenched in water and bile because the feeding tube balloon and popped and fallen out while I was sleeping. I wasn't sure how long it had been out as I couldn't get it to go back in again. I quickly woke Sean up and told him that I needed to go to the hospital to have it replaced as I didn't know how long it had been out and it was the middle of the night. We decided that I would just drive to the ER and get it taken care of because I was thinking that it would only take me a couple of hours and then they would send me home. Needless to say it took a lot longer then that.

It took them about 45 minutes to get me back to be seen. Then they couldn't find the right tube and I kept having to tell them that it was a Jejunosmy tube and not a gastric tube. Here is a picture of what the hole looks like without the tube in it: 

This is what the tube that fell out looks like:

 
Since they couldn't find the right tube, they decided to place a folly catheter until they could find a proper replacement. This would help keep the hole from closing up while I waited. This is what the fully catheter looks like:

After wait and waiting they finally told me that they had to put a referral out to the surgery department to make sure that tube was placed correctly. I knew this was an overkill but at this point I didn't have much choice. A resident Surgeon came in and placed a long tube. They weren't able to find a replacement low profile tube. This one is a little different because it has the long tube and a plastic bumper on the outside of it.  So now I had this long new appendage and I instantly missed the lower profile tube.

I Was hoping that once they placed the tube I would be able to go home but they wanted to make sure it was in the right place and then they also wanted to make sure everything was good with Surgery. One bright note was that I got to see the surgeon that was on my case when I had my bowel obstruction, Dr Eifferman. He was concerned about the balloon and wanted to make sure I could tolerate having a balloon type feeding tube. It was nice to talk to him about my progress and about what has happened since the last time I saw him. He also mentioned another girl who has SMA syndrome and how she wasn't doing as well as he had hoped that she would be doing. He said that he thinks that SMAS just creates damage that can't be fixed and that unfortunately, is something that will plague some for the rest of their lives. Not the happiest thing to hear. I personally think that it just takes a lot longer then anyone has patience for to feel better. 

Anyway after he left, they cleared me to go home. I then had to contact my GI dr's office to see if they could get me a low profile tube. Long story short, she ended up ordering one through my medical supply company. Last Thursday, she placed it and now I am back to having a tube that doesn't really show through my clothing and isn't hanging off my body.