Introducing...

Pickle! This is my newest accessory: a Power-glide mid-line. It is like an IV on steroids.

When I was in Utah, the team that placed my mid-line asked if I had ever named my PICC line that I had had for so long. I hadn't, so this time around I thought I would figure out a name. When I came home, after having the mid-line placed, I walked in the door and Maia was sitting at the table. She leans back and says, "Mommy! Did you get your new Pickle line?" I couldn't help but giggle and the name stuck. 

I am now receiving daily IV's to keep me hydrated till I can have a proper feeding tube placed. I have an appointment on the 4th of August with a GI Dr at the Cleveland Clinic and I hope to see a surgeon on the same day and get prepped and ready for the J tube to be placed. It will be interesting to see how the next few weeks go. 

Moving forward

Today, after 32 days of having a NJ tube through my nose, I had it removed. I couldn't take it anymore. Some people don't have a problem with them, I on the other hand, had a huge problem. It made my throat incredibly sore and caused quite a bit of pain to swallow. I guess that is actually putting it mildly. The best way for me to describe it was it felt like the tip of a butter knife had broken off in the middle of my throat and every time I swallowed it would dig and rub into the tender tissue of my esophagus. It was a good thing that I had a GI appointment today or I would have probably pulled it out my self.

My GI doctor gladly accommodated me in granting my requested to have the devilish device removed. It was amazing the instant difference having the tube gone made. Although my throat was still sore, I could talk again without pain and it no longer caused agony to swallow. I almost cried tears of joy to be rid of that gaustly NJ tube. Now in all fairness, the tube did help keep me nourished for the past 32 days but it came to a point where the pain was out weighing the benefit.

 

To update you all as to what is going on and what hopefully will happen, I must tell you that my vomiting hasn't gotten any better. The Doctors here in Columbus feel that I should have a J tube placed (this would be done surgically and would put a tube directly through my abdomen into my small intestines) because they are not sure what is causing the vomiting and how to stop it. They know I need the nutrition so the next logical step would be to have a J tube until the vomiting stops. My OSU GI doctor and I both agree that I need a second opinion. So I have been trying my darnedest to get into see a GI doctor and a Surgeon at the Cleveland Clinic (CC). The CC is about a 2.5 hour drive from here but they are ranked 2nd in the country for the GI department. I have come to the conclusion that I need a team of experts to help me. We are going to be living in Ohio for at least another 2 years so if it requires me to drive a little ways to be able to get help and set up a good team, then I'm willing to do that. 

Unfortunately, it seams like the month of July is a busy month for Doctors and the month that most of them like to take vacation time and that leaves me not being able to get into see a Doctor till the 4th of August. Since I had the NJ tube pulled, at this current moment I have to fend for myself and try to get as many calories and as much hydration as I can. I should be having a PICC line placed again to help me stay hydrated. I'll be receiving 1500 ml of IV fluids a day once the PICC line is placed. Hopefully I will be able to get enough calories to stay down to hold me over till we can either figure this out or I can have a more permanent feeding tube placed. 

Frankly I don't want another feeding tube, I don't want to be throwing up but I have come to the realization that, this is my trial in life right now and there are worse things then having a J tube (like an NJ tube). Nothing in this situation is ideal but a J tube would allow me to get the nutrition that I need so I can start to get back to the things I enjoy. I want to be able to run with my girls and take them to the zoo without being completely drained the next day. I would like to be able to do more around the house and allow Sean a chance to focus more on his schooling. I would like to play basketball again. The list could go on but there isn't a need to dwell on what I can't have right now. I am grateful for what I do have and understand that even with what I am dealing with, there are millions of people out there who's struggles are far greater then mine. I'm grateful for the medical options that I have because there are so many in the world who do not have a 10th of what I have. I know with a feeding tube I can live more of how I want to it will just be a little different then I had ever imagined. 

Kassia's First Birthday

I know every mother says "I can't believe (enter name here) is (enter age) already! Where has the time gone. They are growing so fast!" I totally feel that way today. This last year has definitely been an interesting one and not what I would have imagined at all for my second child or for my 29th year of life for that matter, but Kassia has been a huge blessing through all of this. She is a sweet baby, who really has been pretty easy going. By this point she has lived half of her life in Ohio and the other half in Utah. I'm so grateful for all the help we have received this past year and for all those who have been such a part of our lives. 

The day started off pretty chill with just hanging around the house. I worked on cupcakes and getting things ready for a BBQ we were putting on later that evening. Around 12 we had a quick Skyping session with Grandma and Grandpa Dahlin and Aunt Mel. They really wanted to watch Kassia open a gift and eat her B-day cake. 

  

Skyping time. Mel is on the phone and the Grandparents are on the Ipad.

She opened her computer first (with the help of Maia).

Cake Time!!

She was not a fan of the cake! She didn't want anything to do with it.

Maia didn't mind helping her eat her cake.

"Why did you make me try that. Now I'm all messy."

After nap time we loaded up the car and headed to Fancyburge Park for a little BBQ for Kassia.

Maia is such a cheeser. These three girls were sitting at the Picnic table and she puts her arms around them both to give them a hug.  

Kassia really enjoyed just hanging out, eating her food and watching everyone mingle.

The party and the park.

Taking a minute to capture a moment with the birthday girl.

We tried the cake again but she really wasn't sure about it.

After a couple tries she decided she was done and didn't want anything to do with the cake.

Katie and Kassia.

Kassia and Rebecka.

Maia was an animal. She was everywhere and anywhere she could be. She took advantage of the fact that there was a playground and people to play with. Maia is pretty social and she loved being able to run and play for a few hours.

I was really glad we asked people to bring their camping chairs because there wouldn't have been enough places for everyone to sit. We had perfect weather and under the tree cover we couldn't have asked for a better place to have this gathering.

Sean did an amazing job cooking the food and I heard really good reports on the how the meat was cooked.

After the food, some of the adults went over to the shuffle board court and started playing. It was nice for them to have this option and, although it is random for a park to have shuffle board court, it was entertaining and something they all enjoyed.

Kassia and Katelin.

We didn't get home till about 8:30 so we quickly bathed the girls and then opened the gifts she was given at the party and from her family.

All and all it was a very good day. Some milestones for Kassia: she is still wearing 9 month cloths but seams to be growing just fine. She is definitely going to be a red head. She does everything with her right hand. She is a good eater and like pretty much anything we give her. She still takes a bottle 3 times a day. Her favorite food is probably frozen Peas but that is being quickly replaced by chicken. This girl loves chicken. She is a solid crawler and loves to cruse around the couch and the walls. She is really close to walking and has even taken a step or two. She just isn't quite confident enough to just take off. I expect in the next week or so she will probably be taking more. She has 6 teeth, 4 on the top and 2 on the bottom but I think she may be teething and having a 3rd come through on the bottom. She is a pretty good sleeper at night and usually will sleep from about 7:30 to 7:00. She like to wake up and start squawking till Maia is awake. They like to yell at each other. It would be cute if we didn't want to keep sleeping but I am grateful for the sleep she does give us. 

Again I feel so incredibly blessed to have this beautiful child in my life and to be her Mother. She adds a great dynamic to our family and she love her sister. I can't wait to see what the next year will bring.   

Fourth of July!

This year for the the 4th of July, we decided to take it pretty easy in the morning. We were invited to go to a BBQ at Sean's classmates house in Granville, which is about 45 minutes away from our place. It was nice to have a place to go and not have to worry about doing anything big. 

We were asked to bring a dessert and that turned out to be a fiasco. I started with making homemade Ice Cream but the recipe I followed only made enough for like two people even though the recipe said it would feed 10. So I quickly made a lemon cake. Well the lemon cake was taken out of the oven too soon so it fell apart when I tried to take it out of the pan. Desert failure number 2. Third time is the charm right? Well I was trying to figure out what I could do and decided I would make some whip cream from a can of coconut milk that I had. I would then cut up the done parts of the cake and make a trifle. I forgot that the cream needed to be chilled to whip. So it didn't turn out at all. I already had added sugar to it so I blended up some blueberries and mixed those in. I then cut up the cake and drizzled the mix on top. It didn't look pretty but Sean said it tasted good. I guess that's all that matters

 

Maia had a lot of fun playing with the kids that were at the party. They had a lot of fun playing in this sandbox. 

 Greg (Sean's classmate) had a couple of cats and Maia thought that the cat really needed to have the pink ball in her hand. 

Lunch with friends.

 

Kassia had a fun time cruzing around the camping chairs. 

Once we got home, the girls were pretty grumpy becuase they had missed their naps. They had fallen asleep in the car but it wasn't long enough for them. Maia was alright but Kassia was really fussy. We just hung out for a little bit then put Kassia down to bed. I had bought some popper fireworks and after Kassia was alseep, Sean and Maia had a good time popping them. 

Around 10:15 pm Sean and I snuck out of the house to watch the fireworks we could see from the side yard at our aparment complex. It was really fun to see the fireworks and then also see the fireflys lite up the feild around us. That was a perfect ending to close out our 4th. 

A huge step back

Sometimes, as we travel through life and take different paths we hit dead ends and have to go back to the last cross road we encountered and try again. That is were I am at right now. Since having surgery in February, I have had a few set backs but we seamed to always be moving forward. An answer was found for those set backs and I didn't have to back track too far. Well the tides have changed and while I thought we were cruising down a road of less bumps and fewer diversions, I have unfortunately hit a dead end. 

Now that I'm done being cryptic, I'll let you know what has happened. I have been in the hospital this week, since last Sunday afternoon due to dehydration and vomiting. When I went into the hospital, they said that my labs looked completely normal and that I didn't look dehydrated at all but they would give me a couple bags of IV fluid anyway to help me feel better. After the second bag was in me, and I wasn't even close to needing to go pee, the doctor came back in and told me that my urine sample definitely showed that I was dehydrated and malnourished. She said that my body is really good at hiding dehydration. 5 bag of IV fluids later I still didn't need to pee so they decided it was time to admit me to the hospital. This was after spending almost 24 hours in the emergency department. 

So they finally took me up to the 9th floor in Rhodes hall at OSU hospital. They continued to pump me full of IV fluids until I was peeing every couple of hours. I think by that time I was probably 8-10 bags in. Then they decided they needed to run some tests to figure out why I was vomiting. They started with an x-ray, and then Gastric emptying study.

For a gastric emptying study, you have to eat radio active eggs and then they put you under a gamma-ray detecting machine and take a picture of your stomach right after you eat the eggs, 1 hour after you eat the eggs and then 2 hours after. They do it to see how quickly the body digests the eggs.  

These pictures were taken from the area that I was left to wait in, in between pictures. 

That test came back normal so the next test they decided to run was a Endoscopy. So Wednesday I was prepped and taken down to do the EGD. That too came back looking normal. Which is good because that means that my surgery sites are healing correctly and look good.  

Right before going down for the Endoscopy.

On Thursday, I then did a small bowel follow through which required me to drink barium which, I know I have tried to explain before but it is like a chalky paint like consistency and it hard to force down. 

Here is a picture of the thick nastiness that painted the inside of my intestines so that they could see how fast it traveled through my bowel. 

The machine that took the x-rays to see my intestines. 

The next morning, the doctors said that all the tests came back normal but that they were concerned because I hadn't eaten anything in a while and my labs were starting to show a decline in my health. They pumped me full of potassium and magnesium and said that I would probably need a feeding tube. No body ever wants a feeding tube but at this point it was either that or I continue to starve. I chose to not starve anymore. 

So off I went down to fluoroscope again (they decided to do it down there, since my anatomy is really funky so they could see everything). Well they tried placing the tube but they couldn't get it past my nasal cavity. They tried for about 5 minuets to get it before they decided to abort the placement and send me back to endoscopy to have it placed endoscopic. They said they were going to give me twilight sedation meaning I wouldn't be in as heavy of a sleep as other times. What ever they gave me, knocked me out for hours afterwards, and made me super sleepy till the next morning. 

Before tube placement shot....

Post tube shot. 

It is a pain in the (you know what) but I'm grateful to have a form of nutrition running in me again. Hopefully this can get me back on my feet again. 

Luckily I was allowed to come home today, exactly one week after I walked in I was able to walk out. I'm not anywhere close to where I want to be but I'm headed in the right direction. This next week will probably be filled with doctors visits and just trying to recuperate.

I wanted to thank everyone for you thoughts, prayers and for those who helped out with taking care of my family while I was in the hospital. I know we couldn't have gotten through it with out all your love and support.