Seattle-part 1

After 2 yrs of not having a family vacation, we finally got one! Yahoo!! Originally we were going to go to Washington DC in September so that we could see the sights and then go to the BSU vs. Virginia Tech football game. It would have been TONS of fun, but after all that I had been through this year with my health we decided that we couldn't afford the trip and that it would be hard (but not impossible) to travel with oxygen and all my other medical equipment clear across the country. A big factor in deciding where we were going to go was my oxygen equipment. Norco medical is in several states in the northwest, so we thought that it would be easier to go where their service area is since they are the company that works with us and has my medical history. As we were thinking about different cities to go to, Seattle was on the list because I had never been there before. Knowing that Curtis is a huge Cub fan, I asked him if the Cubs ever played in Seattle. He told me that they didn't normally play there, but when he looked up their schedule, he was excited to see that this year the Cubs and Mariners played each other. The final deciding factor for us going to Seattle was that the Cubs were playing the Mariners IN Seattle ON Curtis' birthday. So, Happy Birthday to Curtis....we were getting our long awaited vacation and we were going to a Cubs game on his 32nd birthday. :o)



Mon. June 21st: we packed up everything and drove to Seattle (about an 8 hr drive)

Here is all of the oxygen equipment we had to take. L-small oxygen concentrator to use in our hotel room. Middle-my normal portable tank that I fill up and carry around when I leave the house. R-the liquid oxygen tank that we took to fill up the "small" tank so that I could walk around the city and see the sights.

The "kids" all seat-belted into the car and ready to drive to Seattle.

Our really nice and spacious hotel room. It also had a closet, refrigerator and microwave.

Tues. June 22nd: We took a trip up to the top of the space needle. It was a very beautiful sight but boy did it mess with my balance problems. However I was prepared for this. Throughout our vacation Curtis carried my oxygen tank and I brought my cane along. I'm sure it was a funny/interesting sight, but it helped me to enjoy everything we saw/did and that is all that matters.

The famous Space Needle

Smile!

what a view!

After the Space Needle we had lunch and then we went to the Experience Music Project/Science Fiction museum (2 museum's in 1 building). We went to the Music part first. They had many displays on the history of music, recording rooms where you could go and have a jam session and then have it put on a CD (for a price of course), and many other music related things. Unfortunately while we were there we discovered that my oxygen tank was out of oxygen and I was starting to go down-hill, so we didn't get to see all of the music stuff and didn't get to go into the Science Fiction museum (it would have been cool though because they had stuff for Star Trek, Star Wars and other futuristic stuff). We realized after we left the museum and called Norco that my tank was not broken, we had just not filled it up all the way (a mistake we didn't make again the rest of the trip!!!)

This was a pretty cool display at the Experience Music Project Museum

Wed. June 23rd: Happy 32nd Birthday Curtis!!! We decided that since we were staying about 20 min. outside of Seattle, we didn't want to drive into the city twice in one day, so we stayed in Federal Way, WA and had a nice slow relaxing day before the "big game". We went to the Mall next to our hotel and did some window shopping. The mall also had a movie theater in it and we decided to watch Toy Story 3 (which is absolutely hilarious!!!) After the movie we had a small dinner and then got ready to go to the Cubs game! Curtis decided to spend a few extra dollars to get us accessible seating in the ball park, so we were on the bottom level at the top row. (this was mainly so that we could hop on the elevator up to our seats and I didn't have to go up, or down, any stairs; which also helped me to not have any balance/dizziness problems and I was able to enjoy the game) We were on the 3rd base side.

Watching the Cubs warm up for the game

getting the field ready

All ready for the game!

(this was my first MLB game and it was tons of fun!)

Apolo Anton Ono threw the first pitch of the game

Randy Wells was the starting pitcher for the Cubs

2nd inning: Tyler Colvin hits a Home Run for the Cubs!!!!

(fun side note: he played for the Boise Hawks a few years ago)

Unfortunately this was the only time that the Cubs were ahead during the game. The Mariners won 8-1. Despite Curtis' frustration during the game that his team wasn't doing so well, we were both able to enjoy the game. The pitcher for the Mariners that night is one of the top 5 pitchers in the nation. Just to give you an idea, he threw over 100 pitches for the night and about 80% of them were strikes! Every time Curtis has gone to watch a Cubs game they have lost and the very next day they win, and this time was no different...if Curtis goes to enough of their games, "statistically speaking, they should win at some point". (that is quoted directly from Curtis...)

Our view of the field!

I had a lot of fun at my first MLB game. The Cub fans were there in huge numbers and were just as crazy as Curtis described them, and it was a lot of fun to see and experience (especially when they were still shouting and cheering for their team clear until the end of the game, despite the score). I've never been a huge baseball fan, but it is TONS of fun to watch it in person! Maybe next time we can watch a Cubs game in Chicago!

G-tube Pains...the whole story

I know many people already know about all of my g-tube pains, but I still wanted to blog about it for journaling purposes. This is very long…I tried to keep it short, but just couldn’t seem to do it. If you really don’t want to read this, I really do completely understand! Hope you enjoy the story! :o)

April 6th- get the peg-tube placed and start night feedings the next day (all of this is in an earlier post)

Week of May 10th- get the go ahead from Perry that I can convert my peg-tube to the smaller g-tube “button”. I have officially gained 8 lbs in 5 weeks and was up 10 lbs from my lightest weight this year!

Fri. 5/21- go to St. Al’s and get the g-tube button. Dr. R. Gibson (who put in the pet-tube originally) was stuck at the office, so Dr. Goulet (also from the Digestive Heath Clinic) did the procedure. I was given the Cook’s Medical Passport Low Profile Gastronomy Device button (see picture below). That night we try to hook up to my button for my “4th meal” and it doesn’t go in all the way and just leaks. We decide to just skip the feeding for the night and try again during the day the next day.


Sat-Sun 5/22-23-try everything we could think of to get the connection to work. It still leaks and pops out when I cough, so I sit and babysit the connection during the day so that I can still get in all the calories that I need. We learned that there really is a reason they tell you to run the formula in over 4 or more hours….we did 1 hr and then 2 ½ hrs and I was so full and VERY sick to my stomach for a while after that (especially with the 1 hr. feeding…not doing that again!!!)


Mon. 5/24- had an appt. to get my IV port flushed for the month at my IV home health agency. After flushing my port my nurse took a look at my button and he couldn’t get it to work w/out leaking (and he had 25+ yrs working with feeding tubes…). We determined that I needed to call the GI Dr back and complain to them. I spent over an hour and was back and forth on the phone between the dr. office and the hospital trying to figure out what we should do. We, FINALLY, decided to squeeze me into the schedule first thing in the morning to have it looked at.


Tue. 5/25- Go to St. Als to have my button looked at. The nurse and I looked at another button (same brand as mine) to see how the connection was suppose to look when inserted fully and found out that indeed my connections were only going in half-way. The nurse and I tried several times and could not get the connection to go in. Then Dr. Goulet came in and tried. It took tremendous effort for him to get the connection into the button, but he got it, and again tremendous effort to get it disconnected (I thought he was going to pull the button right out of my stomach because he was pushing/pulling so hard!) He told me that I just needed to keep working with it and that it would loosen the inside and then go in easier after “breaking it in”. He pushed and pulled the connection into the button several times. Before I left the hospital I could get the connection in but couldn't get it out. The Dr. also told me that I should try and use Pam spray to help it go in. He also suggested that since I couldn’t get it out myself to have Curtis pull it out when my feeding was done before he left for work and to maybe just use pliers! Ummmm, can't I just have a button that works easily??? Isn't that the point? That night Curtis and I were able to get the connection to work with the small connection instead of the tube connection that we had been using. I could get it in and out myself (with some effort), so we left it at that….at least it was working. Oh, when I saw Dr. Goulet I asked him about how far the button was sticking out and if that was good. (Just so you know the length of the tube was 2.4 cm and it’s suppose to sit flat against my skin) I asked because it was sticking out about 0.4 cm and his response was that if I gained 5 more lbs then it would fit snuggly. We were not charged for this visit (thank heavens!)


Sun. 5/30-I realized that my button was sitting at an angle on my stomach and sticking out a little more than it had been originally. I tried pushing it in and taping it down (to see if that would help “push” it back into the original position), but that hurt.


Tues. 6/1- I went to CF clinic and (thankfully) Dr. Thompson (my CF & GI doc) was there and he saw me. (I know your thinking, “why didn’t you just see him to begin with?” I would have but I only have permission from my insurance to see him at CF clinic). One look at my button and he started talking about how bad it was. It was sticking out about 0.9 cm and the site was starting to look irritated. He said the button was way too big for me and he didn't understand how it was possibly working for me. Dr. Thompson tried to push the button in and it hurt. He asked why they used that brand of button (because he had never seen it before) and I told him about how I was told that was all that St. Al’s had. I recalled how I asked about other button brands and they shot me down and said I had to go with the one they had. Dr. Thompson gave us a website to look at for other buttons that would work a lot better than the one I had (especially ones that could with stand all of my coughing and would still stay in). I told him all about my encounters with Dr. Goulet the previous week. Dr. Thompson told me that I should insist on working with Dr. Rob Gibson because he is who put in the peg-tube and he has a good relationship with Dr. Thompson. He said I was to tell him what brand I would prefer to use and if Dr. Gibson said he couldn't get it to have him give him a call. Unfortunately, Dr. Thompson said that in order for insurance to pay for a button replacement so soon, it would have to be broken and not working. So he told me to sit there and put the connection in and out hundreds of times and that it would break eventually. Ok, that was good. I felt so much better knowing that my doctor thought that what I had was not going to work and he validated all of my feelings.


Wed. 6/2- My g-tube site is really starting to hurt. It felt like I had just gotten it put in all over again. By that night it hurt to sit, stand, cough etc. and my site is definitely red and looks infected and is bleeding some around the site. I started putting the antibiotic cream on it that I had from when my site was first starting to get infected several weeks earlier.


Thurs. 6/3-I woke up early because of pain. My button was sticking out a lot and I was very afraid that it's just going to fall out. I measured it and it was out 1.5 cm, and since it's only 2.4 cm....well, that's just not good. As soon as the Dr. R. Gibson’s office was open, I called the nurse to tell her what was going on. Of course, the Dr. was out of the office that day and was booked the next day. The nurse told me to go to the hospital and see whoever is over there but I didn’t want to do that because I insisted on seeing Dr. Gibson (I really didn’t want to chance seeing Dr. Goulet again). So, she was going to try her best to squeeze me in. After that I called my CF nurse, Mary to complain and to see if I could get Dr. Thompson’s number to talk to him and funny enough Dr. Thompson was standing there talking in her office, so I got to talk to him and tell him what was going on. He has Dr. Sam Gibson (the brother of the my original GI Dr.) on his speed dial, so he immediately gave him a call to tell him what is going on. Dr. Sam Gibson was the doctor at the hospital that day and they agreed to work me in that day. I felt a lot better knowing that Dr. Thompson was on my side and that something was going to get done. Of course after that I was back and forth on the phone with the hospital and the GI Dr’s office for the next hour or so. It was finally determined that the hospital was going to get another button brand there, but the button rep wouldn’t be there until the next morning with the new button. So if I went in the same day they would have just put in a smaller tube and then I would have to come back the next day to have that tube pulled and the new button put in. I opted to wait until the next day because then I would only have had to do that whole thing once. (I also didn’t want to run the risk of insurance not paying for it.) I was scheduled to see Dr. Rob Gibson right after lunch Friday and was reassured that he would get a full report of what was going on before we did anything. I was also told there was a chance that he might not be there during my scheduled appt. with him because he was also scheduled to be at the office. They reassured me that Dr. Goulet would not be there and that Dr. Tanabe would be and that he is just as good as Dr. Gibson. (So what’s the point of making an appt. with the one Dr., when they know very well there is a 95% chance that I won’t see him????) Seriously I almost didn’t care at this point who took care of me....I just wanted a functioning button that connects correctly, sits flatter, and I wanted to be fee from the horrible pain! I did not do a night feeding because I was afraid the button would be pulled out in the middle of the night because of the pressure of coughing and also from the pull that the tubing was putting on it.


Fri. 6/6-Curtis decided to work a ½ day so that he could take me to my appt. Of course, because of scheduling problems (and the hospital trying to get me in as “fast” as they could) I did not get to see Dr. Gibson. I ended up seeing Dr. Tanabe, who did get a full report from both Dr. Gibson’s and the hospital nurses about what was going on with me. After waiting for an hour, Dr. Tanabe finally came in and took one look at my stomach and had the same reaction that Dr. Thompson had. He had never seen the button that I had and asked why they had even used it and wanted to know why it looked so bad. Dr. Tanabe was all for changing the button but was worried that it had come out of my stomach, thus potentially closing part of the tract. So he wanted to scope me to see if it was still in my stomach and then he wanted to watch himself pull it out and put the new one in. I was all for it since I had also wondered if it had come too far out. So I ended up having to be sedated & scoped...good thing Curtis was with me. When Dr. Tanabe looked in my stomach he couldn’t find a hole. When he pushed on the button he could see where it was suppose to be, but sure enough my stomach hole had closed. The button was literally sitting between my stomach and my skin…barley hanging on. On top of all of this, I had a screaming red infection, so Dr. Tanabe really had no choice but to pull out the button. He didn’t want to put in a new peg-tube right then until after I healed. After waking up from that, he put me on an oral antibiotic to help with the infection, and told me to call the next week to check in with Dr. Gibson about starting the process all over again. It was bitter-sweet for me….I wasn’t looking forward to starting everything all over again, but I was VERY MUCH looking forward to feeling better! (I had my button for exactly 2 weeks)


Week of 6/9-I started to feel a lot better. My site only leaked for a day and then was completely closed and healed a couple of days after that. (It would have been sooner but it all goes back to my really hard whole body cough that I have all the time…) I wanted to get my CF Dr’s opinion about what we should do and sure enough everyone was gone for the week. (Dr. Brown is gone on sabbatical for 3 months in South America, Dr. Thompson is on vacation, and Dr. Rulon was super busy trying to change from her normal office schedule to taking over for Dr. Brown’s schedule and they had her completely overbooked.) I did call Dr. Gibson’s office but we all agreed that I should wait and see what my CF Dr. suggested.


Tues. 6/15-I went back to CF clinic (mostly for regular CF stuff) and saw Dr. Thompson again. He hadn’t yet heard what had finally ended up happening to me, so he enjoyed listening to my story. He felt bad for me and told me what I should do for the “next go-round”. He also stated that he thought that it was all Dr. Goulet’s fault for putting in a bad button and causing the button to come out when he had pushed and pulled on it so much at the beginning….I don’t blame everything on the Dr. because I think that my hard whole body cough didn’t help and all and actually helped to push the button out. We reviewed the different kind of g-tube buttons that there are and how they really do make them to stay in your body. Obviously they can be easily pulled, but they are made to withstand my hard full-body cough (when you have the right size of button in) and some other tugs and pulls that normally happen when you are connected to something via tubing. We decided that it was my call for when I start the process over again. I had lost 2 lbs since I had the button pulled, but as long as I didn’t lose any more then I could wait a month or so.


My decision: I wanted to wait until after our vacation to Seattle and after Curtis finished scout camp before I had the peg-tube placed again. This is mostly because I know what kind of pain I will be in and how long I will be down and I wanted to enjoy my vacation free of pain and didn’t want to have Curtis gone for a week as I was trying to recover. This time around I am demanding that I only work with Dr. Rob Gibson for the peg-tube placement and when we convert to a button. I finally have my surgery/procedure date set for July 29th with Dr. Gibson for sure doing the procedure. When I get the peg-tube I’m getting the info about the exact size that I need for a button so that I can order the one I want from my home health agency and then I can bring it into my appt. when we change it out. I now know what kind of pain to expect, what an infection looks like and feels like, and I know how the whole tube is suppose to function. I will be making sure that I can get the connection to work by myself BEFORE I leave the hospital. I have steroid cream to put on my site that I got the first time around (around week 3-4) that helped the granulation tissue to heal because my coughing was making it take a lot longer than it normally would have, and I’m going to start using it w/in the first week (or as soon as my CF Dr tells me that I can). And finally, even though it will drive me crazy, I’m waiting the full 10 weeks before I have them change out the pet-tube to a button to make absolutely sure that my site is healed and well “developed” so that we shouldn’t have problems after we switch to the button.
And now you know the rest of the story. :o)

Our Garden

We are very excited about our garden this year. Last year we had my brother build us some raised garden boxes, but for some reason nothing grew last year. We think the reason was several factors: it was over watered the first couple of weeks because of a rainy week and also because the sprinklers had a mind of their own and ran everyday when they were only scheduled to come on 2-3 times that week....we also had half of the dirt from a ditch that Parley got from his boss for free and then we added the garden box mixture to it, so the combination could have just been a bad mix for growing veggies...the neighbors cat was constantly digging in the boxes...we planted seeds that needed lots of sun in a spot that got lots of shade (for some reason we forgot to take into account the shade from the tree that we put one of the boxes next to)....and some of our seeds were older seeds. So all of these or some combination of them lead to a garden that didn't grow. It was sad, but ok because we got veggies from family and neighbors.

Anyway, this year we decided that we would remove all of the dirt and start all over again. We mixed 1/3 peat moss, 1/3 vermiculite and 1/3 compost in each box. We bought new seeds for lettuce, carrots and sugar snap peas. We then bought pre-started plants for our tomatoes, pepper, zucchini, and cucumber plants. Of course right after we planted the neighborhood cat came and dug right where we planted carrots....thankfully it wasn't a huge loss. Here are some before and after pictures of our garden:

Box 1:

This was around June 14th, a week or two after we first planted.

Zucchini, pepper & cucumber this week....

I think they will make it!

Tomatoes this week

Box 2: looking at our seeds first growing

You can't see but the carrots are growing towards the top of this picture

The carrots this week
You can tell where the cat dug..grrr!

Our 3 rows of peas with the lettuce on the far side

I'm soooo excited that the peas are growing...I can't wait to eat them!

Hooray for a growing garden!!!

Brenda's Graduation

For the last year Brenda would constantly remind me that she was a senior now and that she was going to graduate from High School. For those of you who know Brenda, this is nothing new. She always reminds me how old she is going to be at her next birthday, tells me that any food we are talking about is her "favorite food" and that anyone that she talks to at school, church or out in the community is her "best friend". (We usually have the same conversation over and over again, it gets old sometimes but I still love her) With the constant reminder that she was a senior, I've still been hoping that this day would not come (for at least another year or too.....because that means that I'm getting older!) We finally got Brenda's senior pictures done the beginning of May. We had my parent's neighbor and our friend Jolyn take Brenda's pictures because she new how to deal with Brenda. Brenda likes getting her pictures taken, but it's usually in the pose that she wants and she also has a very short attention span. Jolyn did an awesome job with her pictures! Here are some of my favorite ones:

Brenda's graduation was on May 28 at the Idaho Center. She was soooo excited about it, although I think she was more excited that we were going to have a party afterwards for her than she was about the actual graduation. Anyway, I was worried that she would have a hard time sitting through the graduation ceremony....in a way she did. She knew where we were sitting and about every 5 min. she would look up to us and start waving her hands above her head at us. It was really cute. After she walked across the stage she got to walk through a line of teachers who were there to congratulate the graduates, which she was very excited about because she loves giving hugs...I think that she hugged at least 1/2 of the teachers. When the students went to move their tassels, Brenda knew that right after that they got to throw their hats...so she took her hat off early and waited patiently for the chance to throw her hat. I loved it!

After the graduation ceremony was over and we got a few pictures we all headed to our house to have a BBQ for Brenda. Grandma & Grandpa Ward came as well as our cousin Mary and her 3 kids. My friend Crystal also came over (who is really good with Brenda and is her "best friend") Overall it was a fun night, especially for Brenda!!! Here are some of the pictures from the night...sorry about them being in random order.

Congrats Brenda! I love you!!!

Dad, Curtis and I during the ceremony

All smiles!

Some of the party decorations at our house

Very cute picture of Brenda & Nicole

"I'm SO happy!!!"

Brenda with Grandma Myers

(Grandma had another graduation to attend right after Brenda's for our cousin Kody. Lucky for Grandma it was also at the Idaho Center...unfortunately it made for a long day there...but she made it to both of them. Sorry we missed your graduation Kody! Congrats to you too!!!)

"I'm all graduated now!"

The proud Dad

Sam made this AWESOME cake for Brenda!

Family picture after our BBQ with our cousin Mary and her 3 kidos.

CF Great Strides Walk 2010

With the crazy year that I've had this year the CF walk seemed to sneek up on me. Of course I always know that it is in May, but I thought that it was the last Saturday of May. (I'm not the only one who thought that, a few other people that I know that walk it every year thought so too) Anyway, Mother's Day weekend I finally got around to having time (and remembered) to register for the walk. That is when I realized that it was in 2 weeks! AHHHH! Oh well, no worries right? I was not worried about trying to raise a bunch of money or getting people to walk with me, this year I mostly just wanted to walk and finish it (here in Boise the walk is around 1 1/2 miles and is a very pretty nature walk). In an effort to get the word out and to try and get some money raised, I did put the walk on Facebook. (which turns out to be a GREAT way to get people involved!!!)

I was surprised when Curtis' sister said that they were thinking about coming up to walk with us. Heather said that Ben's work also does matching donations, so they were working on that. I also had some ladies in the ward that told me they wanted to come to the walk too. Some of the ladies posted something about the CF walk on FB and one of them had a friend in New Jersey that donated to my team. My best friend Shasta usually comes to the walk every year and I was afraid that with such short notice of the date change that she wouldn't be able to come, but she was free! Yahoo!!! (although the poor thing got food poisining the night before and was too sick to come and walk...but I know her heart was there with me!!) After all that, I felt like it was my birthday all over again and I was really excited to go to the walk.

With not much effort this year, we were able to have the biggest team that I've ever had walk with us. We also were able to raise around $750....in 2 weeks, that is really not bad at all!!!

Usually the weather at the CF walk is hot and the cotton from the cotton trees is flying everywhere. This year it was the opposite! It was freezing! I think it was around 45 degrees, the wind was blowing, and it was threatining to rain. Really it was great walking weather. I was really only cold when I wasn't moving....which was mostly after I finished walking and was trying to eat and listen to the numbers for the raffle prizes.

How did I do this year? Good. I started out carrying my oxygen, but soon realized that I had to have someone else carry it if I was going to have a chance at walking the whole thing. About 10 min. into the walk I had to stop and rest because Heather noticed that my lips were blue (and it was not because I was cold). I did know that I was having a hard time breathing, but seriously I've had a hard time breathing for most of this year so I wasn't thinking about it too much. I was determined to keep up with everyone and that is really all I was thinking about. I was a little disappointed that I had to slow down, but when I realized that I still had 5 or 6 people still walking with me and reasuring me the whole time then I was fine. At the half way mark I had to hold onto Heather to keep my balance, but I kept walking! I was in the last group to finish the walk but that's ok because I DID IT!! Besides, it's not about winning the race or finishing first, it's all about finishing. The fact that I finished the 1 1/2 miles this year was a HUGE accomplishment for me. (yes, I was exhausted the rest of the day....but I finished the walk :-)

2010 Team Sister's
Curtis, Heather, Matthew & I up at the registration table

My friend Rochelle & I

Right at the beginning of the walk

Rochelle, Kristy, Nicole, Curtis & I

A view of all the walkers at the start. This year we had more walkers than we've ever had here in Boise....well at least in the 5 yrs I've been doing it, it was the biggest group I've ever seen.

Ben & Curtis

Heather & Brenda

My cute nephew Spencer holding the umbrella

Sam trying to stay warm....yes it really is that COLD!

Trying to stay warm

My cute nephew Matthew

"Aunt Sara, I love you and I'm excited for next year's CF walk!"

I'm excited for 2011 CF Great Strides Walk too! It should be tons of fun!!!

Ethan's Baptism

My little boy that I started watching when he was 3 months old recently turned 8. (I can't believe that he is 8 now....I remember when he was first learning how to talk.....man how the time flies!) It was a wonderful sweet experience to watch Ethan dressed in white, enter the waters of baptism and then later recieve the Gift of the Holy Ghost. Ethan is such a kind loving boy and he always brightens my day when I get to see him. :o) Thank you Ethan for letting me be a part of your special day! Aidan, I'm looking forward to your special day in 2 yrs!!!

Ethan & Aidan
I love this picture!!!
His aunt did an awesome job on the cake too!

When I asked him if we could get a picture together he said "Sure, lets go get our picture taken in front of the picture of Heavenly Father!" Oh, how I love this boy!!

Fun Entertainment

Last month Curtis and I went and watched a TaVaci spring performance/concert. TaVaci is a singing and dancing group for kids pre-school to 6th grade. We went to watch Ethan & Aidan perform in their first performance. It was great! The kids sang some pretty fun songs and they had actions to go right along with them. I think I was laughing most of the night because of the song, the actions, or some of the funny things that the kids were doing. The boys did great and were very well behaved up there. Here is a clip from the last song....the song was great, but the boy in the very front in the middle makes this absolutely funny! :o)

G-tube update

I'm finally getting around to updating about how my g-tube is working. I had a peg-tube placed on April 6th. This procedure was done as an outpatient procedure and was one of the worst experiences I've ever had. (I'll spare you the details) They placed the peg-tube in first and then after the site has healed, then they change it out for the g-tube button. Here is a picture of what the peg-tube looks like: (sorry if this makes you queasy....the gauze around it helps it to not look bad...I promise!)
Healing from this procedure was an adventure. The GI dr. said that I would only be in pain for about 2-3 days...but when you have CF and you cough all the time it takes a lot longer! The first couple of days I could hardly move with out being in pain. Finally after 2 1/2 weeks, it didn't hurt when I coughed. After about 3 1/2 weeks it finally didn't hurt when my tube was touched or moved. Constantly dealing with a 10in. tube hanging out of my stomach was very interesting, but I quickly learned how to deal with it. Hooking up to and flushing the tube was also lots of fun. The tube constantly had some of my stomach contents in it and if we were not careful, they would come "spilling out" of the end of the tube when we opened it to flush or connect the tubing for my feedings. (gross I know, but it's part of the package when you get a feeding tube) Another adventure was that the first couple of weeks I had to sleep at a 30 degree angle. This was because the formula can cause reflux problems and could also end up in my airways. I didn't mind at first because it hurt to lay flat. My doctor gave me the go-ahead to sleep flat after a few weeks, as long as I didn't have reflux or breathing problems. Thankfully I tolerate the formula well, so I can now sleep flat and on my side. :o)

This is the formula, or medical food that we are using. In one can it has 375 calories, 14g of fat, 47g of carbohydrates, 16.9 g of protein and has lots of other vitamins and minerals in 1 can. We started off with 2 cans a night with the intent to work our way up to 4 cans a night. When we started to look up information about getting a g-tube and the formula, I had a heart attack with the cost of this stuff. Of course, our insurance would pay for the procedure and all of the supplies needed, but not pay a penny towards the medical food (unless I was under the age of 2!). Peptamen 1.5 is one of the most expensive ones. It is around $219 for 24 cans. So you can imagine how expensive it would be if we did 4 cans a night....ahhh!!! Thankfully I started to gain weight with using 2 cans a night in 1 1/2 weeks, so my doctor didn't want to increase how much we were using because it was working and he wanted to help save us money. Soon we will be switching to a different kind of formula that would still have the nutrients that I need at a fraction of the cost. I'm not sure what we will be using. We got samples of several different formulas this week and we'll begin seeing what I tolerate before we completely switch.

Here is my new "buddy" at night. The pump is small and very quiet. Unfortunately the tubing with the bag is not very long, so the pump has to be right next to my side of the bed. It is a little annoying to have the feeding tube tubing and the oxygen tubing all night long, but I've slept with oxygen at night for over 9 yrs and have been on IV meds too many times to count, so I am use to all of the tubing.

This is my "4th meal". Curtis has taken great pride in preparing my tube feedings each night. He says that he now "cooks for me everyday, making me a gourmet meal every night that has complete balanced nutrition" Dork! All he does is shake up two cans, dump them into the bag, prime the tubing and I'm all ready to go. I'm so glad that I don't have to taste this stuff. It smells gross, even the vanilla flavored formula. So while you could say that I eat all night long, I prefer to think of it as digesting all night long. Eating is when you put food into your mouth, chew, swallow and then digest.

How is my weight? I gained 7 lbs in 5 weeks! I'm now up to 120lbs (which is 10lbs heavier than my lowest weight this year!) Ideally we would like me to gain another 5-10lbs. Since I'm short, my ideal body weight is around 125lbs. I would like to try to get to 130lbs at least. I have been there before, and I would like to be at the higher end just so that when I do get sick and lose weight, it won't be too bad. We are still doing just 2 cans a night. Since it takes 7-8 hrs to get my 700 calories, I wake up hungry, which then translates to me eating more during the day. I didn't realize just how much I was stressing about trying to eat everyday before. Now I no longer worry about it. I eat when I'm hungry and when I want to. I have more energy and I feel better. Best of all, my clothes are starting to fit again! Even with only gaining 7lbs, people are noticing. Many people, especially those at church who've been watching and helping us during all of this, have said how much better I look. :o)

So even though it's been painful and we're still working out some small problems as they come along, it was definitely worth getting the feeding tube. I recently got my peg-tube converted to the button, but I'll wait to share pictures of how that looks after I've healed a little more.

Trying to catch up....

With everything that has been going on, I've neglected my blog. If you want to read about what's going on in a cronological order, you'll have to start reading with my oxygen post a little lower on the page and then work your way up. Of course, I've had technical difficulties while trying to post all of this....so it may take me a little bit longer to get some new posts up (or it could be that I'm really a blonde today and can't figure things out....) Anyway, sorry there are some long posts. My blog is currently my journal, and as much as I try to keep it short....well, it just doesn't seem to happen. I'll try to post more (with some pictures) soon! :o)

Feeding Tube

Over the last 5 yrs my weight has been slowly dropping. There are several factors that play into this. Obviously the big one is that I have CF, which means that I don’t absorb fat, vitamins and other nutrients very well. To help with this problem I take pancreatic enzymes to help digest my food to get the nutrients that I need. Because of this, people with CF often require 20-100% more calories than individuals without CF. The other major factor to my weight loss is lung infections. When I’m sick my body (just like everyone else) burns calories faster and more energy is burned with labored breathing, so I need extra calories to make up for this. That’s easier said than done….how many people feel like eating when they are sick, yet that is when it is most important to eat?! Add into that equation the antibiotics that I take. Most of them make food not taste good, messes with my heartburn, and (one of them) gives me horrible diarrhea…..which overall makes me not really want to eat. When I do get sick, I tend to drop 5 lbs really fast, maintain while on antibiotics, and then slowly start to regain after I’m off antibiotics and feeling better. When I have short period of time in between antibiotic therapy this really doesn’t help my weight gain. (as evident with the sick winter that I have had)

What have I been doing to gain weight? For a long time I have been forcing myself to eat, which is NOT easy when food doesn’t sound &/or taste good. For over a year I have also been taking an appetite stimulant pill in hopes that I would eat because I felt hungry. I have also been drinking some high calorie shakes (mostly Scandi-shakes that contain 600 calories per 8 oz). Even with all of my efforts, I have not been able to gain the needed weight. Before I got really sick, my weight was around 122 lbs (my highest weight in the last 8 yrs was 132 lbs), this year my lowest weight has been 110 lbs.

Anyway, after all that I have been through over the last several months, my lung function is still low Even after having a month to heal from my lung surgery and doing all I could at home to help, my PFTs are still around 30%. At this time Perry (my CF Dr.) suggested that we look into getting a feeding tube to help me gain weight. He reassured me that he knew that I was doing all that I could to gain the weight and he applauded my efforts to take care of myself. He then gave me the pros and cons of having a feeding tube and suggested that we do it soon, but he told me that it was my decision and that I needed to go home and discuss it with Curtis. So after some research, lots of prayer, and discussing this together with Curtis, we decided that I did need to get a feeding tube to help me gain the weight.

So, why a feeding tube? It’s a way to get an extra 1,000-2,000 calories while I sleep. It relives the pressure and worry to eat as much as I can during the day when I really don’t feel like it. Obviously I’m still going to eat during the day, but I don’t have to constantly force myself to eat. (I do still really like food!) Through research that I’ve done, I learned that the benefits of tube feeding include: fewer illnesses, stabilization of lung function, more energy, better mood, fewer fights over eating, increased appetite and less worry over weight. All good things in my book!!!! Some of the drawbacks to tube feeding include: having and healing from the procedure to put the tube into my stomach, doing “one more thing” to take care of myself, and of course there is always the insurance issue….not fun, but all do-able!

How do I feel about all of this? Pretty good actually! For a long time I said that I would do anything I could to keep from getting a feeding tube. However, after battling with my weight for a while, I did start to change my mind. Curtis and I read an article back in December about CF nutrition and feeding tubes. The article listed all of the benefits of feeding tubes that I mentioned earlier. I remember thinking at that time: “Maybe this is something that we should look into.” When Perry mentioned it a few months later I was already thinking about it and felt like the Lord had been preparing me for this. Once Curtis and I researched and prayed about it, I knew that we were making the right decision. My stress level has gone down because I know that I don’t have to constantly worry about food anymore. The one thing that was really hard for me to hear is that I won’t be able to be pregnant if I have a feeding tube (as I would be getting a gastric tube in my stomach and not the one that you put down your nose every night). I know that after a while that we could remove the g-tube and then maybe I could get pregnant….but I also know how much it’s going to help me when I’m sick and on antibiotics and need the extra calories. I have faith that we will be able to have kids someday, even if it is through adoption. I don’t know when it will happen, but I do know that we will be blessed to be parent’s one day. (until then I get to love my nephew’s and all of the babies and kids around me and give them back to their parents when I’m done…..I think it’s a good arrangement!)

As most of you already know, I did get my g-tube placed on April 6th. I’ll post about how things are going soon!!

29th Birthday

I turned 29 this year….holy cow, I really don’t feel like I’m that old! Part of me still thinks of myself as being only 20, but on the days that I really don’t feel good, I feel much older than my 29 yrs. Anyway, after all that I have been through this year I was not really looking forward to my birthday. I was afraid to plan anything fun and exciting because there was a chance that those would change. Despite all of that, I had family and friends who were determined that I would have a good birthday anyway.

The festivities started off a week before my birthday when we had dinner with my family. Since I was in the hospital during my sister Sam’s birthday, we ended up celebrating her birthday with the family late….and since we had to reschedule (again because of my health) we decided that we would just celebrate our birthdays together. We had my whole family over, along with my Grandma and Grandpa Ward. It was fun to visit with my family and enjoy each other’s company.

The day before my birthday, my neighbor threw a party for me at her house and invited some other ladies in the ward. One of them cooked an Angel Food cake, and they lit candles and sang to me. I even had presents….lotions, a book, and lots of chocolate! It was so nice to get out of the house and to visit with some wonderful and dear friends. (pictures below...)

On my birthday I went to work for the last time to turn in all of my paperwork. I was sad to be leaving, but I know that it is the right thing to do. Since my birthday was on Wednesday and Curtis has scouts/mutual that night and I’ve been so sick, we didn’t plan anything. Curtis did surprise me with a dozen roses when he came home from work. They were beautiful!!! I then went to a YW program in Kuna, where my sister Brenda was getting recognized for earning her YW Recognition award. (It was really cute, they had interviewed all of the girls and asked them what their favorite project was and how that helped them to draw closer to Christ and the Temple. Brenda was so excited to talk about the blanket that “her sister Sara helped her learn how to make.” I’m glad that she really liked that project, it was fun to do with her.) After the mutual activities for the evening, we spend some time with Curtis’ family to celebrate my birthday by visiting and opening presents. Curtis and I celebrated my birthday on the weekend by going out to dinner at Johnny Carino’s. Even though I wasn’t excited about my birthday this year (like I am most years) it did end up turning out pretty good. :o)

I hope that 29 is a fun and healthy year!!!!

(on a side note: I did take my oxygen off to blow out my candles. When I feel better I do want to try and blow out 29 candles instead of just 2.)

Oxygen

The first week after having my 4th lung surgery was hard. I was often in pain and even something as simple as walking to the bathroom would exhaust me. Since I had been through this surgery and recovery before, I was not too surprised by this. I didn’t have a problem taking it easy. We were also very blessed to have help from family and many sisters in our ward who helped to clean and who brought dinner to us.

A week after my surgery I was back at the doctor for a check-up. This time I was seeing my regular CF doctor (Perry Brown) who had been out of town when I was coughing up blood and had surgery. As expected my lung function was back down and my weight was still low. My oxygen was also low (barley 90% at rest), which made sense (given everything that I had just been through) but for some reason I was not expecting that. Perry was concerned with everything being low, but knew that it was expected, especially since this was my 4th bronchial embolization. Our big concern was my oxygen level…so he had me walk around the office for a few minutes and we monitored my oxygen saturation. It dropped as low as 84% and never went above 88% while I was walking (and it was a slow walk…nothing too strenuous). Hmmm, no wonder I was continually exhausted! With this information it was decided that I needed to go on full-time oxygen, at least temporarily. Perry reassured me that what I really needed was time for my body to heal. I need time to work on eating more and gaining the weight that I’ve lost over the last several months. ..time to be on oxygen full time to help my lungs to heal. Time…..

I left the office knowing that the logical thing was to go on oxygen full time, but emotionally I was very upset by it. I cried all the way home. I cried when I got home. One of my wonderful visiting teachers came over to my house and she let me cry to her and tell her all about how upset I was by this decision. I was frustrated because I didn’t want to deal with all of the looks and questions that I would get from people. Wearing oxygen is a constant visible reminder that I’m not doing well inside my body. It reminded me of all of my CF friends who have passed away and how they were on oxygen full time before they passed away. It was one more thing that I would have to deal with on top of an already full schedule of trying to take care of myself. I was upset because I didn’t go back to the doctor for 2 weeks and that meant that I was going to be on oxygen full time on my birthday. I always have known that at some point in my life I would be on oxygen full time, but that always seemed so far away and here it was right before my 29th birthday. I was frustrated that a few people that I had told about it told me to stop complaining and to be happy and to look at the bright side of things. I felt like no matter what I said they didn’t understand. My wonderful visiting teacher listened to me and validated all of my feelings. (she had breast cancer a few years ago and knew a little about what I’m going through emotionally) We talked about how it’s ok that I feel down and depressed about it. We talked about how when you have a chronic illness it’s hard to accept when you move up the ladder in the progression and severity of the disease. It was all ok that I was upset and that I needed to get all of the emotion out and not keep it bottled up inside. She also validated that I needed to be ok with it before I could deal with the “rest of the world” and the questions that I could get from people who just didn’t understand and/or wanted to help. What a blessing she was to me that day and such a wonderful tender mercy that the Lord had given to me!!! After our visit I felt much better and could see the silver lining in this “new adventure”.

So my new adventure is living with some “new accessories”, having a constant “tail”, and carrying a “pet” with me whenever I leave the house. The first week was hard for me, but I had constant love and support from everyone around me. I definitely haven’t let wearing oxygen slow me down. I carry it with me everywhere. Now it’s just a part of who I am. I’m not sure how long I’m going to have to wear it full time, but it doesn’t matter. It has helped me to feel better, so that is all that matters! (and the fact that I don’t have to be in the hospital just to wear it…definitely a huge plus!)

Testimony Building Experiences

I know that I haven’t written much on our blog the last several months. Mostly it’s been because we’ve been so busy and I’ve been sick. Warning: this is long!!! Here is a summary of the last 3 months:

The middle of December I got sick and had to go on home IVs and oral antibiotics. Christmas was fun, we had both sides of the family over at our house on Christmas Day, my family was here early for breakfast and presents, and then Curtis’ family was here for presents and dinner. While Curtis’ sister & family were here for the week, we got to babysit and play with our 2 cute nephews. Lots of fun!!

I got off all antibiotics on Jan. 9th and 3 days later when I was back at the doctor’s office I was sick again and right back to where I was a month ago when we started all the antibiotics. The last day of my IVs, my port had completely stopped working. We had a bunch of tests done that week to 1) see why it wasn’t working and if we could get it to work and 2) to find out if there were other reasons why I had done a complete turn- around so fast. (FYI-a port, or Porta-Cath, is a very long lasting central line that is completely under the skin. When it’s time for IV use I just insert a needle into the drum of the catheter and we’re ready to go. This is very nice since we don’t have to find and poke my veins for IV use!) The next week (Jan 18th) I went back into the office and went straight to the hospital. My oxygen was low and my breathing test was down to 30%. I had no objections to this because I felt that bad. I was also quite depressed because of being sick for so long.

My hospital visit was long and busy. I was on oxygen 24 hrs for almost 5 days, I had surgery to remove my port (which I’d had for 9 ½ yrs….apparently a new record. Most only last 5 yrs. It sounds like it had started to fall apart because it had been inside my body for so long). I had a PICC line placed in my arm for my IVs, which I was getting every 4 hrs! I also did breathing treatments/airway clearance with respiratory 4 times a day. I was also supposed to eat all the time (kinda hard when food doesn’t taste good and I have no appetite.) And I was supposed to get rest during all of this???? (I did get lots of rest in between and it was very nice!) The last day I was in I had surgery to place a new port that is now on the opposite side of where my old one was. I was in for a total of 11 days and boy was I ready to come home!!! I felt great mentally and physically. I didn’t even feel this good at Christmas.

After my hospital stay I had to recover from the surgery to put the new port in….which was VERY painful, and try to work up to my “normal” schedule of doing things. 2 weeks after getting out of the hospital I was able to get off my IV and oral antibiotics and was starting to feel like my normal self again. Yahoo!!!! This brings us up to Fri. Feb. 12th.

Fri. night I coughed up some blood. Not too alarming since it happens at least once every couple of months. Saturday afternoon it started again. By Saturday evening I could hardly walk around without coughing up blood and doing my normal breathing treatments and airway clearance caused the same problem. Curtis called a member of the bishopric to come and help give me a blessing. In my blessing I was blessed to have peace, that I would be able to sleep, and that the Lord knew what I was going through and that he was with me every moment helping me to get through this. This helped both Curtis and I to feel better. After eating our dinner, cheese fondue with yummy dippings (which Curtis made all by himself) we went to bed. Sunday morning Curtis went to his 8 am mtg. and I got up to do a breathing treatment and was still coughing up blood. When he got home at 9, we both knew that I needed to go to the ER and be admitted.

We got right into an ER “room” and were there for 4 hrs before they admitted me as a patient. I was put on oxygen, had a chest x-ray, blood tests, a CT-scan with contrast dye, an ultrasound of my arms, neck and legs to see if I had blood clots, and an endoscopy (or tube down my nose into my lungs) to find where the bleeding was. It was then determined that I needed to have a bronchial artery embolization to stop the bleeding. Basically I had some blood vessels that were leaking in my lungs and we needed to stop it. I was finally given to ok to eat at 6:30 pm and was also given 2 bags of plasma because my levels were low. All of this made for a VERY long day. This was not how I had planned on spending my Valentine’s Day, nor was it romantic….but I was able to have Curtis with me all day, so that made it worth it.

Monday morning at 8:30 I was taken down to surgery to have my 4th embolization done. They went in through my femoral vein/artery (I can’t remember which one) on my right side and up into my lungs. While inside they found the major area that I was bleeding from and placed 6 coils inside some of my blood vessels to seal the leak and stop the bleeding. This took about 1 ½ hrs. Everything ran smoothly, but because I had started coughing really hard a couple of times during the procedure (yes I was alert and awake, but sedated) there was concern that I could pop the opening up that they had created and I could lose a lot of blood. So I had to lay flat for about 1 ½ hrs and then could have my head at a 30 degree angle for the next 7 hours and every time I coughed/sneezed I had to put pressure over my incision to make sure that didn’t happen. I was able to move around VERY slowly by Monday night and was released to come home Tuesday late afternoon with strict orders to take it easy and not over exert myself. Don’t worry, I’m not. I have absolutely no energy and am easily exhausted. My lungs are sore and my leg is sore, but it gets better a little each day.

Blessings: Even though the last couple of months have been a huge trial for me, I know that I’m being blessed. My testimony of the power of the priesthood is stronger. I know and have felt the Lord helping me through each moment. He has carried me each time I have struggled to breathe. He has carried me through each moment of the day and night. He has been with me to keep me calm through all of the various tests I’ve had done, the 3 different surgeries I’ve had in the last month, and the many long days in the hospital. He has been with me when I was scared and felt alone. He has been with Curtis and helped him to stay calm, take care of me, and to be able to keep up with work and scouts. He has helped Curtis and I to grow closer together. He has blessed me with wonderful family members and ward members who come over and clean my house, bring dinner over, and help cheer me up. To sum it up: I know that my Redeemer lives to comfort me when faint… to hear my soul’s complaint… to wipe away my tears…He lives to grant me daily breath…He lives and loves me to the end…He lives and I shall conquer death! This all has been a great testimony building experience for us.

Where have the Cahoon's gone?

"Oh where, oh where have the Cahoon's gone,
Oh where, oh where can they be?
With the cute short blonde and the tall bald man,
Oh where, oh where can they be????"

Yes, that was me singing a new song that I thought of last night (to the tune of "Oh where, oh where has my little dog gone"). It is a little dumb, but it made me chuckle. So now for the question you've all been asking: Where have the Cahoon's gone and what have they been up to? I know...I haven't been blogging and I'm sure you're wondering what is going on with us. As usual, we've been quite busy and time seems to get faster all the time. (I swear it was just October 1st yesterday...)

I have tons to blog about but I have many reasons for not blogging (with only some of them listed here):
1) I had sinus surgery in October so I was preparing for that and then recovering from it.
2) We've celebrated 4 birthday's in my family since I last posted.
3) I've had reviews to write, changes to make to plans, and weekly paperwork to write up for work (which is more of a priority than blogging).
4) I'm trying to leave the computer available to Sam when she is home so that she can use it to do all of the homework that she has.
5) The final reason is because I'm trying not to spend all of my time on the computer....so I've tried to limit myself the the amount of computer time I have each day. While I don't have a "magic number" for how long I can be on, I do try and limit the amount of time I'm on facebook, reading others blogs, checking & writing emails and all together sitting in front of the computer. I do have lots still to do on the computer as I need to use it for work and my callings (Ward bulletin & Ward historian) and it all never ends!

I will do my best to catch up on blogging....it just may take me another week or two (or maybe for Christmas to be over...) for me to be able to have the time I need to catch up. We'll see how I do...wish me luck!