LIVING

With EoE, Allergies, Asthma and a G-Tube

Changing of the Mic-Key

Happy Valentine’s Day! I love my Tubie!
What is the best thing that has happened with tube feeding? What benefits have you seen? What progress would you like to celebrate?
1. Gage has gained his weight back plus a few pounds.
2. I now know he’s getting all the nutrition he needs. I don’t have to worry about if I’m feeding him enough of the right things.
3. I would like to celebrate the fact we’ve made it through the first two months. It is still an adjustment period. He still asks for things daily that he can’t have.
I would also like to celebrate the changing of the Mic-Key button for the first time yesterday. Gage was so scared. He cried in fear of the pain he might have. It was super painful for him to get the button, he remembers that pain. No matter how much we assured him it wasn’t going to hurt, he didn’t believe us.
We made our way to the new hospital. I put Tinleigh in her stroller with her food bag, Charlie’s food bag, Gage’s feeding tube backpack with supplies, my purse and a bag of coloring stuff and vtech toys. I had no idea what kind of wait we would have. As I was checking in a nurse called us back! I was excited there was no wait in the waiting room. So we chugged on back to our check up room. Got Gage’s vitals and the nurse left us. Not even ten minutes later the RN, nutritionist and another nurse came. They all introduced themselves and we went over Gage’s EoE history. Then, it was time. Gage was already sitting on the table. The nurse asked Gage to lay back so she could see his button. As she was checking it out Charlie covered his head with his coat. I asked what he was doing. He came out from under it crying. Oh boy here we go. So as the nurse gathered things to change the button the RN left. She promptly came back with another nurse who asked Charlie if he would like to go for a walk. He said YES! He was crying because he was scared for Gage. Oh those boys have a wonderful bond. The nurse even coaxed Tinleigh away from my leg. They assured Gage it wasn’t going to hurt. They even showed him how the balloon blows up once it’s in him. It was cool. A lot tinier than I had envisioned. Then the RN said ok Gage here we go. Before I knew it I was looking at a hole in his tummy then it was over. Gage sat up with his huge beautiful smile and said “It only pinched a little”. He then jumped off the table and ran out the door looking to show Charlie. He and I were both relieved. I was a bit dizzy and hot from seeing the hole. Strange. I was so proud of him not wincing once or throwing a 4 year old fit. He just let them do it. Luckily they agreed to time up his next button change with his scope so I won’t have to do it. However, I did need to see how it’s done just in case it would fall out. G-Tube
The RN and I then spoke about his next scope. I mentioned Charlie and Tinleigh would be in at the end of the month and they both needed scoped as well. She said no problem and went ahead and scheduled them all 3 on the same day at the end of March. SCORE! It will be our first triple scope day! Wait, I probably shouldn’t be celebrating that. th
Gage’s appointment time was at 3 and we were on the road heading home by 4:30. That was in a huge hospital which included walking to the parking garage and getting out. I hope it’s always like that.
Yes, we did have one hick-up. How could we not. On our way out we stopped to use the restroom. I changed Tinleigh on the fold down table. Once I was done I put her on the floor. Then I bent down to pick up the diaper I had thrown down and at the same time pushed the table up with my hand. Well, the latch didn’t catch so as I was standing from my squat position the table slammed down right on top of my head. Thought I was going to pass out or need stitches. Luckily neither happened.
dizzy

February 14, 2013 Posted by | LIVING | Leave a comment

Support

Todays topic: We can all use a little help: Friends and Family

 What can friends and family do to help or be more supportive? What would you like them to know about tube feeding?
We recently did receive help. We received so much help from friends, family and even people we didn’t know. It was all started by my sweet friend Jessica.
When Gage got his feeding tube there were a lot of unknowns and very high emotions during that time. The very last thing we wanted to hear from our home health was that Gage’s formula wasn’t covered. Our home health manager was a friend as well. He felt horribly about it. He said in 8 years he had never heard of a child with a feeding tube not get coverage. Figures it would happen to us. He informed me through them it would cost $1780 a month. WHAT?!  He had found it at a local grocery pharmacy for $40 a can. Gage goes through one can a day. Forty times 30 days is $1200. I wanted to slam my head in the door. The insurance rejected coverage because the formula can be bought over the counter. However, you must have a doctors scrip to get it at a pharmacy.
I tried to fight the insurance company. They fought back. We had good insurance too. We aren’t the only EoE family this has happened to. It happens quite often. There is some help out there. Some states have passed legislation stating that health insurance has to cover medical food for feeding tubes. There are also reimbursement programs through the various formula companies. Neither of these were an option to us.
My sister-in-law was able to give us their extra cans of formula. Both of our parents helped out some too. Then one day I receive a phone call from my friend Jessica. She says to me that she would like to do a fundraiser for Gage to help cover our formula costs. As awkward as it felt I agreed. It was a funny feeling after hanging up the phone. Are we really a family that needs a fundraiser? We are. It’s so strange to say that out loud. I have been dealing with this disease for almost 3 years now. Jessica suggesting a fundraiser helped me to step outside my bubble and take a look at my family from another point of view. Wow. I have a special needs family. It’s taking some getting use to now that I am seeing things that way.
Jessica made up some pamphlets and started her fundraiser. A week went by and Jessica and I decided she would surprise me with the results. Then my sister-in-law calls and says so and so is going to mail you a check. Why I asked. She replied “Because of the fundraiser”. Really?  What Jessica didn’t realize that by putting the fundraiser on facebook our entire families and friends could see it. As the next week went on more people had contacted my sister-in-law saying they wanted to help. Jessica and I had spoken at the end of the last week and she was so excited with the turn out she had gotten.
Nathan and I are just blown away. We are never ones to ask for help of any kind. Now in our time of need, we can not believe how selfless and generous people are. I truly feel we are loved. Family members, old friends and new, came to our side to help us through this hard time. Even people we don’t know helped us. I wish I knew the right words to express our extreme gratitude. This support lifted our spirits, we needed that.
Thank you all.
One day when our kids are older I plan to share this wonderful story with them. I want them to have the selfless giving heart that those who helped us have. We will pay it forward and I will teach them what it means.
Jessica,
Thank you.
You have no idea how much your fundraiser has helped us once that snowball got rolling.
With all my heart,
Love Kara  th

February 13, 2013 Posted by | LIVING | Leave a comment

Been there, done that

Been there, done that: Help for New Tubies 

What is your advice for those who are faced with the decision to tube feed or are new to tube feeding? Share your knowledge and experience to help others!

Today’s topic was a logical decision but very hard for us to say out loud.

Like I have blogged before, I never would have imagined we would be at the point we are now. Our road seems to be turning into dirt as I type. A little Tinleigh update – she’s recently had some food impaction and is back to choking often. Not good since we have removed all foods she has tested positive to plus some. We don’t have high hopes for her next scope, which may result in a tube for her as well. Few extra prayers for Tinleigh if you don’t mind.

Back to the topic

The decision of getting a feeding tube can almost be a selfish one for the parent. It can go either way too. Especially with the allergy kids. A parent can say yes give my child a feeding tube then I won’t have to worry about cooking all these special meals for them. Makes me sick to my stomach to type that out. A parent can also say no you will not put a tube in my child I would never do that to them. (guilty here)  Which may result in poor nutrition and poor growth.

When considering a feeding tube for your child you must think about your child’s health.

A child’s body is made to grow. It is your job as a parent to help them do that in a healthy way. If your child is falling on the growth charts it’s your job to get them back on. Their little brains are developing as well. If the nutrition isn’t there, then their brain can’t develop as it should be. You need to get your child what their body needs to thrive. If that means through a tube then you should help them to get one placed.

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We struggled back and forth on the decision. What it came down to was what Gage needed, not us. He was losing weight. Being 4 his little brain is developing a lot right now. He was missing an entire food group from his diet. How selfish of me to even think about trying to remove something else from his diet to get him a clear scope. It was time to throw in the towel to his horrid disease and give Gage what he needed, a g-tube.

Gage is shy. We knew it was probably going to be hard for him at first. He has shocked the pants off me though. He is quite proud of his tube. He’s also proud of how big his muscles are growing. I think it may have been a totally different ball game if he would have had to have an n-tube first. That may have turned him into a hermit. I’m glad we made the decision to push for the g-tube from the get go. I’m also so glad we had an understanding GI doctor at the time.

There are many diseases that may require kids to get a feeding tube. I only have experience with the allergy side of it. I think that all parents of tubies would agree, seeing your child thrive with a feeding tube is a huge sigh of relief.

I won’t lie, I don’t miss cooking for Gage one bit. However, if he had enough food in his diet to thrive on, I would cook for him again in a heartbeat. Hopefully that day will come. For now I’m just calling this my Gage cooking break.

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Gage pre-tube

February 12, 2013 Posted by | LIVING | 2 Comments

Tubie Gear

Today in honor of Feeding Tube Awareness week we all sported our new tubie shirts!

Gage was SO excited to get his shirt. Just the fact that it said super tubie excited him. Not because it was actually about his tube, but because he thought it made him a true super hero. Of course I could go all sappy on how in our eyes he is…  So then, with Charlie in his shirt Gage assumed that meant Charlie was his side kick. You would think that when I put on my t-shirt I would become a side kick as well. He said “No mom, that makes you my butler.” Some days I feel that way Gage.

I decided we would wear our t-shirts as much as possible this week and I will wash them every night if the boys want me to.

This morning before school I had the boys pose together. DSCN23241

Both still had sleepy eyes. Gage had his backpack on with his “breakfast”.

Then right after I snapped the picture I caught a true brother love moment.

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Gage turned to Charlie and gave him the biggest hug. I didn’t say a word, but I’m pretty sure Gage was just so happy Charlie was wearing his shirt to school too showing his support.

Wiping tear…

Then I got Tinleigh up and dressed. Dropped Charlie off at school. Gage had a morning doctors appointment, no school for him today. When we came back home I tried to get Tinleigh’s picture in her tubie gear.

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I kept getting this. She is ornery. Flat out ornery. She is giggling with her back to me.

I finally got one good one.

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Today’s topic for awareness week:

It takes a village: Tubie Resources and Support
What resources have helped you the most?
How did you connect with others?
How did it feel to find others who were going through the same thing?
1. Being somewhat new to having the tube the few resources I have used are the Feeding Tube awareness foundation, Oley foundation and the nurses at the hospital when Gage has his button put in. I recently placed an order with Make Lemon-aid for g-tube pads.
2. I’ve only connected with a few other moms. One being my sister-in-law and the second a fellow EoE mom. It also happened that Charlie’s teacher at his old school had a niece and nephew with tubes. I mainly connect with people through facebook. I haven’t had a chance to really sit down and search out others at this point. Gage got to connect with his cousin tubie Ellie since moving closer.
3. For Gage to not feel so alone I got on the Mic-Key website and showed him pictures of other kids. I also had him watch the APFED video. I think it helps.
Stay tuned… Tomorrow is Been There, Done That.

February 11, 2013 Posted by | Gage's allergies, LIVING | , | Leave a comment

Feeding Tube Awareness Week!

Happy Feeding Tube Awareness Week! The mission of Awareness Week is to promote the positive benefits of feeding tubes as a life saving medical intervention.

It was a given when we came to the point of Gage needing a feeding tube. It sucked telling the doctor okay let’s do it. Sucked even more telling Gage what was going to happen to him. Some days are still so very hard. However, while flipping through some pictures recently I realized how much of a difference Gage’s feeding tube has made.

I am starting off feeding tube awareness week with two pictures. The first is Gage in sept 2012. He is trying his coconut milk for the first time. The second is last night. I can’t believe how much he has filled out! So even though adjusting to the feeding tube is so hard, just seeing how much he is thriving is enough to make it worth it.

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Look at the belly and how much his little arms have filled out! He has put on 5 pounds since December 5th, the day he got his tube. That’s 15% of his own body weight! I’ll take that!

One of the first things we told Gage when he was going to get his tube was that it would make him faster and stronger. It sure is! We remind him that all the time too. When he see’s a family member he hasn’t seen in a while he likes to flex and show them how big his muscles are getting.

Charge on Gage! This awareness week EVERYONE is cheering you on!

February 10, 2013 Posted by | Gage's allergies, LIVING | , , , , | Leave a comment

The Video

When we first found out Gage had Eosinophilic Esophagitis I, like any other mom, ran to the computer and googled it. I can remember sitting and watching this video and crying. I felt horribly for those kids. I couldn’t imagine having to pay the equivalent to a mortgage payment for formula. It never really hit me then that it’s a life long battle. That we would be fighting this for days, weeks, months and years. I never thought it would get worse for Gage. I never imagined Charlie having it and certainly not another child.

Well, here we are. It did get worse. Gage is on a feeding tube. We did pay $1200 a month for two months for formula to feed him. Charlie is flaring back up. Tinleigh is a horrible mess.

I think my reality is starting to set in. For the last 3 years the focus has been so much on what to feed them I’ve never taken a step back and looked at the big picture. We are a special needs family. Sounds so strange. It’s very much the truth though.

My kids face everyday with the risk of having a deadly anaphylactic reaction. I just learned this week your lungs can collapse with such a reaction. I’ve seen Nathan in the ER I don’t know how many times so I felt I could handle one if it happened to the kids. Learning about the lungs collapsing scares the pants off me.

My kids also face a life long journey of food battles. I imagine the teenage years being the hardest. By that point we’ll all be so tired of this shit they’ll boycott treatment and if they’re anything like their dad they’ll eat what they want and risk it. Scares me knowing I can’t always control what they put in their mouth. That’s a long ways off though, I’ll do my best training now to prevent that from happening!

We’re not the only family dealing with this, please take 5 minutes and watch this video.

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Ellie 3 & Gage 4

Ellie 3 & Gage 4

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February 7, 2013 Posted by | LIVING | Leave a comment

Vaccines

My miss Tinleigh
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It’s that dreaded time every baby fears. Shots. My temperamental fireball gets mad at herself if she falls down. How will she handle shots this go around?
Not well. She had to get 5. I’m not sure if the shots themselves were worse or if it was the removal of the band aids after her bath that night.
The thing that worried me the most this time around was the MMR shot. Development of the vaccine involves eggs. Gage is anaphylactic to eggs but got the shot before we knew that. He did just fine with it. Tinleigh doesn’t test positive to eggs but does test positive to chicken. She has never eaten an egg though. Not sure why I was so worried with her getting it. It maybe just the fact that all three of my kids are allergy balls and if someone were to react to a vaccine it would be one of my kids. The doctor wanted her to have it because he felt the risk of her catching one of the viruses around here was high. So we did it. Five shots in with some very loud screaming and one pissed off baby I decided it would be best to linger in the doctors office a little longer than usual afterwards. It’s been two days since the shots and no symptoms.
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We did decide not to do the flu shot this year. Both boys test positive to eggs and chicken. Having the allergist do a skin prick test with the actual vaccine to see if they have a positive or negative reaction, is by far worse than the kids actually having the flu for 24 hours. My kids fear needles more than doomsday prepper’s fear the end. I had a flu bout towards the end of December and Charlie had it just this week for 24 hours. Luckily Gage and Tinleigh haven’t gotten it. Knock on wood. I refuse to put the kids through more needles unless it’s necessary. Nathan and I both agreed that even though the flu can turn ugly, it’s not worth putting them through what they think is torcher to get the shot. I do all I can to keep them healthy everyday, what’s curing a little flu bug?
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I believe vaccines are a huge controversy. Mainly linking to autism. How do other allergy moms feel about vaccines? Do they avoid giving their child certain vaccines? Are they like us and pray for no reaction to the vaccine to protect our child’s health in the long run? Do all egg positive people steer clear of the flu shot or do they risk it?

February 6, 2013 Posted by | LIVING | Leave a comment

Epi Pen usage

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For those that don’t know – that’s a used adult epi pen

ALWAYS ALWAYS ALWAYS talk with your kids about epi pen safety.

Then do it again.

Keep doing it.

Especially if they’re little.

We had a scare tonight.
I’m in the kitchen.
I have my back to the boys.
I hear a click.
Then a scream.
I turn and Gage has something hanging from the center of his hand.
Hmm, I thought, what could that be?
Must really hurt, he’s really screaming.
I run over and realize it was Nathan’s epi pen dangling from his little chubby hand.
I literally had to pull it out.
Gage screamed and Charlie cried for him.
It was so dramatic and intense.
Turns out Gage is just fine and learned a good lesson.

They make practice epi pens with no needle.

He told me he was trying to practice on his leg but couldn’t get the  needle to come out.

Yep, he’s just 4.
Phew

On a side note, always print out emergency room directions from your new home the day you move to a new state.

February 4, 2013 Posted by | LIVING | Leave a comment

   

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