LIVING

With EoE, Allergies, Asthma and a G-Tube

Scopes x4

We scheduled all four kids to be scoped on the same day. Our crew filled the 4 spots the hospital would do that day.

The night before we made the 3 hour drive to the hotel. We set up a formula bar.camera 081Fed everyone a snack and attempted to settle in for the night. IMG_0724Layton luckily went right to sleep in her pack’n’play. Tinleigh slept with mom and I. Nathan and the boys took the pull out couch. I think Nathan got the short end of the stick as I noticed Gage basically slept on top of him all night.

We had to get up bright and early. I tried to keep track of the times things happened and do a blog post that way, it ended up too crazy for me to keep going back to log things in.

Here’s as far as I got

4:30am up and at em
4:37 i put my makeup on by the light of the microwavecamera 090
4:45 mom broke her diamond necklace in the dark hotel room and the diamond flew off
5:00 woke up kids
5:15 found missing diamond
5:30 headed to hospital
5:50 checked in all 4 kidscamera 099
6:20 got called back to our roomphoto 2
7:15 Layton got loopy medscamera 098
7:35 Layton went back
8:05 Tinleigh got loopy meds
8:10 Laytons done
Tinleigh went back
Gage got meds
9:07 Gage went back

After this I wasn’t able to keep a log. Once Gage went back Layton came out. Mom and I headed down to be with her and could hear her yelling as we rounded the corner. I knew I had another little Tinleigh on my hands. We walked into her curtain area where one of the nurses was trying to hold her as she screamed and tried to wiggle away. She was fired up. I noticed something in her mouth. I quickly asked what it was. The nurse said a goldfish cracker. WHAT?! I said don’t those have dairy in them? I don’t usually buy them because my other kids are allergic to them. The nurse looked at me and said no it’s just wheat. We scooped the cracker out of her mouth anyways, they handed her to me and then they all left. I grabbed the bag of crackers and sure enough there’s milk in the crackers. I looked down at Layton and right there around her ankle is her little allergy bracelet with one work on it: MILK. I was pissed and nervous all at the same time. I was trying to calm her down, watch for any signs of a reaction and trying to figure out in my head how to handle this situation with the nurses. Her regular nurse came in and I told her in a calm manner the crackers do have milk in them. I then told her if this would have been Tinleigh she would be having an anaphylactic reaction. The nurse went and said something to the pacu nurses about their mistake. I left it at that. Luckily Layton was fine. I called the patient advocate line the next day and took care of the situation. photo 5I then asked the nurse for a glucose bottle for Layton in hopes it would calm her. That’s what always worked for Tinleigh. Sure enough it worked for Layton as well. Layton didn’t like the heart monitors, her IV or the blood pressure cuff. She just wanted it all off. So we keep giving her little bottles of water and turned on the tv. I was able to keep her a little more calm until it was time to unhook her from everything. Once she was finally calm Tinleigh came rolling into our recovery bay. photo 4Tinleigh has a history of waking up crazy mad. The doctor now gives her a little something to calm her down. It works like a charm. She woke up happy and mellow this time. She saw Layton’s little bottle and instantly wanted one too. She may be 3-1/2 but if it keeps her happy then so be it. We entertained the girls for a while and then Gage came out. photo 3We propped him up in a chair and he was quiet and content. Didn’t want bothered only wanted some sprite. Layton was starting to want to run around by this point. So we found a wagon and took the girls for rides up and down the hall. It was still early in the morning and we were the only ones in the whole recovery area. photo 1(1)Finally Charlie came out. We propped him up in a chair as well.camera 171They boys sat drinking sprite and watching tv.  No one got sick. No one threw a fit, except Layton. It was a good day for scopes. The doctor came and spoke to us once everyone was done. Everything appeared good in each of them. Tinleigh had one little spot that looked like small ulcer so they biopsied it. Other than that all the inflammation was down. We know not to get our hopes up because that doesn’t always mean they’re eosinophil clear but it is a good sign that things could be better. We left the hospital by 12:30. We were all exhausted but it was over, we did it.

Friday afternoon I got a call from the doctor. Results were in. I felt numb. She asked who I wanted first. Layton of course! Guess what Layton scoped clear! She may also start on dairy. I couldn’t believe my ears. I think I’m still in shock. Does this mean she’s cleared for life? No, not really. She is on all food at this point in time and is scoping clear. It could flare in the future. We’ll pray that she doesn’t. Charlie was 4 before he started having issues and he was on a regular diet until that point. Let’s think positive though. IMG_0737Next up were Charlie’s results. He was clear all the way through. There were no more eosinophils in his belly either. We had removed soy and started him on reflux medication. The eosionphils in his lower esophagus were gone also. So we will keep him on the meds and off of soy going forward. Even though he doesn’t show any allergic reactions to soy his skin and blood test for soy are huge. So in this case allergy testing does work for him trying to figure out EoE. Charlie is going to trial beef next. He hasn’t had beef since he was 4 and that was the food that set everything into action for him as far as allergies and EoE go. He can only eat pork and fish right now and really needs another protein. Chicken is a trigger and he keeps testing positive to shellfish so beef it is. Fingers crossed he doesn’t have an allergic reaction. camera 039

Gage’s scope was better. All of his inflammation and furrowing were gone. So the removal of corn helped clear things up. However, he was still showing 10/12 eosinophils in some areas. Gage has always had a lower number of eosiophils since having a feeding tube. The highest it’s ever been though is a 9. We don’t want to see these numbers in a steady climb. Cauliflower was the only thing he was trialing. I mentioned to our doctor he has been complaining of his throat burning. So we are going to let Gage keep cauliflower and start him on reflux meds. We are hoping maybe he has some reflux going on and this is why he’s showing low numbers of eosinophils. We will let him take the meds for 2 weeks before letting him start a new trial. His new trial will be broccoli and watermelon. We will scope him at the end of July. photo 1

Tinleigh failed her food trial this time around. Although she didn’t have any visual signs of EoE her numbers were 10/20. So we have to remove bananas and squash from her diet. The doctor is letting Tinleigh keep Enjoy Life Chocolate chips because they are just cocoa. We are going to pull these 2 foods from her diet for two weeks then she will trial oranges and sweet potatoes. Tinleigh will get scoped at the same time as Gage.

For both Tinleigh and Gage if they have high numbers at their next scope we will have to dial things back and get them to a clear scope before we can continue to move forwards. So i’m really praying things straighten out for them these next two months.

We’re very happy with how things are going for the kids.  A little sad Tinleigh has to take away bananas and squash but she still gets to move forward. It’s all just part of how crazy this disease is.

May 30, 2015 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

Keep the formula flowin’

I make 96 ounces of formula each day, not including what Layton drinks. I have made this as simple as possible so that I’m only mixing it 4 times a day. It’s super easy and quick.

I bought a small pitcher, measured 7-1/2 ouces 4 times and dumped it in. I then drew a line on the pitcher where the water settled.
image

Next time I will only have to add water to the line, no measuring.

I then dump in the formula which is 28 scoops. karas camera 532Now it’s time to mix.

I found a hand mixer at Walmart made by Hamilton Beach. karas camera 533I am shocked I haven’t burnt up the motor yet.

This batch will last for 2 of Gage’s feeds or one of Gage’s and 2 of Tinleigh’s.

karas camera 534I keep a corner in our kitchen just for the kids supplies and meds. There’s really no sense in hiding it away in cupboards because I’m constantly using it. During bad times the perimeter is lined with prescriptions and breathing treatment meds. This picture is on a good day, just the basics.

December 29, 2014 Posted by | daily life, LIVING | , , | Leave a comment

Our EoE video

I’ve been wanting to do a video for a few years now and have never found the time to do it. Even now I’m typing one handed and feeding Layton. I stayed up until 2am last night after the kids went to bed and got a video made!! Then of course I had issues converting it and uploading it.

Here it is! It shares a quick glimpse of our journey with EoE from January 2010 until today.

EOE

May 23, 2014 Posted by | LIVING | , , , , , , , , , , , , , , , | 1 Comment

Please help us find a cure

You are just a few clicks away from helping my kids one day be able to go to birthdays and eat what the other kids are eating.

One click away from my kids going out for breakfast on their birthday.

One click away from going to the movies and buying a treat.

One click away from a family vacation, which is virtually impossible unless i pack an entire trailer of food.

One click away from my kids going to the dairy bar or getting a treat from the ice cream truck.

One click away from me not having to pack a duffel bag of food every time we leave the house for more than a few hours.

I think most importantly, one click away from me cooking one dinner for my family that we can all sit down and enjoy together.

You’re also one click away from helping many families put an end to the staggering grocery bills.

One click away from helping end the outrageous hospital bills that are never ending because of the maintenance of this disease.

Please help us find a cure.

Forgo you’re expensive coffee tomorrow and donate that money to CURED.

Donate what your family would spend when you go out to dinner.

Donate the cost of the candy your child picks out in the grocery line that mine can’t eat.

Donate $1.

Every little amount helps my kids come closer to one day being able to eat a normal healthy diet.

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May 19, 2014 Posted by | LIVING | , , , , , , | 2 Comments

Scope time

Jan. 2014 / April 2014

Jan. 2014 / April 2014

I want to start this post with a little comparison picture. Tinleigh got her feeding tube in January, three months ago, and has been elemental since then. Look at the cheeks on this girl! She’s finally getting the nutrition she needs. The day of her tube surgery she weighed in at 25 pounds. She was scoped this week and weighed in at 30 pounds. We definitely made the right decision.

Our initial plan after the kids being scoped in December was to wait until June to scope them again. We needed a break. Well that didn’t happen. Gage started having some reactions to the foods he was trialing and Tinleigh was BEGGING us to eat. Since it had been three months since her tube was placed it was okay now to go ahead and scope her. Same with Gage, we typically trial foods for three months then scope.

Gage was trialing cherries, tomatoes, pork and corn syrup. The cherries didn’t seem to be an issue. The pork we thought he was just truly allergic to and we were hoping it wasn’t effecting his esophagus. Some days he could eat pork with no problem. Other days he would cough, get itchy ears and throat. Tomatoes were starting to cause him to cough while eating them.

pork ribs and green beans

pork ribs and green beans

Typical scope day procedures. The kids were applauded for their good behavior and co-operation with everything. The doctor, anesthesiologist and I joked in the procedure room as Gage was being knocked out if we practice scope day at home because they do so well. Sadly, we’ve just done it so many times it’s just another day to them.

Tinleigh was first and she came out with the good results. I was fearful of what her results would show because she had eaten a few rice cakes and black olives in the weeks prior to her scope.

Trying plain rice

Trying plain rice

She showed no eosinophils in her biopsies so in a way she sort of passed rice and black olives.DSCN4315

 Moving forward I fed her rice everyday for a week and have since moved onto green beans. In another week we will try blueberries. She will be scoped again in three months to see how things are going in there.

Trying gluten free rice krispies for the first time

Trying gluten free rice krispies for the first time

DSCN4322DSCN4323

Next was Gage’s turn. Unfortunately his scope wasn’t so good.

Gages esophagus and stomach

Gages esophagus and stomach

As you can see in the first two pictures there are some bumps and lines, that’s bad. The esophagus should look smooth like the back of your hand. His biopsies showed greater than 40 eosinophils  in the upper, mid and distal (lower) esophagus. Nathan and I were both very sad for him. This means we have to remove pork and tomatoes from his diet. We knew from seeing reactions while eating those two things we had to remove them. I’m still sketchy on the corn syrup but that’s mainly in candy and he’s not eating a ton of candy so we’ll leave it in and pray his next scope in 6 weeks is clear.

I had to have a talk with Gage after we got the results to let him know how things were and break the news about pork and tomatoes. I sat him on my lap and we talked about what the doctor told me and I showed him his esophagus pictures. He then asked if he’s allowed to trial corn. I got a little teary eyed and explained we first have to take away the pork and tomatoes then we have to let his esophagus heal for 6 weeks. We’ll re-scope him to make sure he’s all better THEN we get to possibly try corn. I sort of reviewed with him how crappy the pork and tomatoes make him feel to help him be okay with getting rid of them. He understood. He wasn’t thrilled that we have to wait but he never threw a fit or cried. I then felt I needed to talk about Tinleigh’s results with him. Explaining that she had a good scope and will get to add foods this time. I reminded him of how exciting it was when he had his first clear scope after getting his button and getting to start foods. We agreed to be happy for Tinleigh and celebrate her good scope. Down the road I can see how this is going to make things extra hard. One having a good scope and the other a bad one. I need to make sure I cover all feelings and emotions now with them so there’s no jealousy or acting out in the future. EoE is not fair to begin with, throwing crappy results on top of that makes it worse. Especially if your sibling has good results.

1509818_10152081584356723_6149994122435379946_n

Gage keeps right on LIVING even with bad results. Catching crawfish

 

April 30, 2014 Posted by | Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , , , | 1 Comment

Home

That evening the Gage met us in the garage. He was so excited to see Tinleigh and have her home.  He immediately wanted to see her button. I told him we needed to get her hooked up very soon because it was time. As Tinleigh and I made our way into the family room Gage took off. After a few minutes I went up to the kitchen to get her formula ready. Gage was getting things ready for her. He had gotten a new formula bag out and had it hooked up to his pump. He was filling the little water bottles with distilled water so we could flush her when we were done. He also had the pitcher of formula sitting on the counter. I can’t imagine how he felt. He was so happy to help out. Shortly after he got his button he would ask us when everyone else was going to get a button. His little dream came true.

So we sat Tinleigh down on the couch and proceeded to try to hook her up. Of course she was scared it was going to hurt and didn’t want anyone touching her. Gage was right by her side trying to distract her, telling her it doesn’t hurt and that she needs the food in her belly. It was so sweet. Finally the two of them have a connection. One of us sat with Tinleigh during her feed and when she was done Gage was right there to help flush out her extension tube.

I gave her a bath after her feed. One thing to know about your new tubie is that they can get it wet but they can not submerge it under water for at least two weeks. She played for quite a while in the tub. I bet it made her feel like a million bucks.

That night I laid her down at her usual 7:30 bedtime. She slept so soundly the entire night. She didn’t wake up until after 9am the next day. Poor thing was exhausted. She had not had her full daily calories by bedtime, but we assumed her tummy had shrunk and didn’t want to push it. I also was not about to hook her up over night she needed some good sleep.

I was glad we went ahead and came home instead of staying one more night.  DSCN3976

January 21, 2014 Posted by | LIVING, Tinleigh's allergies | , , , , , , | Leave a comment

Round two

Back we went to the hospital the next Tuesday morning. Nathan had an important meeting at work he could not miss so mom went with me this time.

We pulled into the parking garage and Tinleigh said “No”. She knew what was going on. We got her up to peds surgery and tried to get her to play. She was so hungry and thirsty this morning. She was not a happy camper. Luckily it wasn’t long before the nurse called us back. Tinleigh was hesitant to go back this morning. We finally got her to willingly walk back. She did however refuse to put on the hospital jammies. DSCN3960She made her mask just like she does every time. Then we tried to keep her occupied playing with cars and a little train set. She was begging for something to eat and drink. We tried our best to keep her mind off of food and drink and tryed to get her to focus on other things. Finally I told her the doctor would bring her a drink, oral versed. From that point on every time a nurse would walk by she would yell “Doctor drink! Doctor drink!”

Finally she got her oral versed, I signed consent forms and spoke with the doctors that would be in her operating room. DSCN3961She was relaxed and ready to go. I had slipped on her jammies with out her even really noticing what I was doing. She had her tubie buddy with her that she had received the week before. The attending anesthesiologist came and got her and off they went. Huge deep breath. Here we go again.

Mom and I made our way to the waiting room and settled in. I then decided we better eat because it was going to be a long afternoon. Once again I sulked down to the cafeteria wondering if they would be able to proceed with the operation this time.

I made it back to the waiting room with our food and there was no sign of the doctors so I assumed things were going as planned. A few minutes later Nathan arrived. I’m not quite sure what time it was but I got a call from anesthesia that they were done and reversing her meds to wake her back up. Five minutes after that our GI and surgeon met us in the consultation room. The surgeon explained everything went great. He didn’t need to make the extra incision he thought he was going to have to make. He was able to do everything through her belly button. We discussed her pain levels and the plan for feeding her while we were in the hospital.

It was over. Now we just needed to get to go see her. Because it takes a little more to knock her out, it takes her a little longer to wake her up. Mom had to leave to be able to be back in town to get the boys from school so she left before we got to go see Tinleigh. It took Tinleigh quite a while to wake up but we didn’t mind. We knew there was a great chance she wasn’t going to be a happy camper.

We finally got her to come around. She woke up calm. We were shocked. She looked at the splint with the IV on her hand and didn’t even make a fuss over it. She did sort of grab at her belly a few times but because it hurt. She didn’t realize there was anything in there. I think we got up to her room around 3 and our plan was to hook her up for the first time around 6. It wasn’t long before she was sitting up and eating ice. Still quite groggy from the morphine but she wasn’t about to let that stuff make her sleepy! DSCN3963So she ate ice and played on my tablet for a while and was content.DSCN3962I was just waiting for this explosion of the little Tinleigh I knew.

Around 6 we showed her, her button and explained we were going to hook her up. Just like Gage. She repeated things back to us and understood she had a button like Gage. The first time we hooked her up it was with pedialyte. It was only a few ml’s into it and she said puke puke. The problem was she had been drinking so much pop and eating so much ice her little tummy was already full. So I just stopped the machine and unhooked her. I wasn’t going to stuff her and make her puke. So I informed the nurse of what I had done and sort of told her how it was going to go. DSCN3964We waited a few hours then we hooked her up again. This time at a very slow rate and we kept her on it over night. When I say slow I mean like she was getting one ounce an hour.

It was getting late and she was hurting again so we gave her some morphine in hopes it would also knock her out.DSCN3965

Big negative. Not our little fighter. In this picture she appears to be praying. Instead she actually has both thumbs in her mouth and is dozing off. Refuses to lay back and go to sleep. It was 10pm at this point. She was no about to give in. Before this picture happened she did fall asleep sitting up with her index finger half way up her nose. We finally laid her back and she slept.  Then an hour later she woke up! Ready to go again. DSCN3967She was quite cranky and loud. A nurse brought in a doctors play bag full of things. That occupied her for quite a while. DSCN3968Then her and Nathan had a fun time banging on the plastic roof on her crib.

Nathan finally had to leave so he could get up for work the next day. Once he left she wanted me to hold her. I turned the tv off along with the lights and I held her in the chair, barely. Because of my stomach she kept sliding off. By 1am she was asleep. For the next two hours I tried twice to lay her in her own bed. She would wake up and yell. So I knew that wasn’t going to happen. Problem was I couldn’t fall asleep holding her because I wasn’t sure she would stay on my lap. Plus we had IV cords and her belly was hooked up. I didn’t want to risk something coming out. Finally around 3am a nurse came in to check on us and I asked him to help me get her into her bed. With success we laid her down and she stayed asleep. I tip-toed down the hall and used the restroom while he pulled my chair bed out and made it up for me.

The worst part of all of this is that we had a shared room. We had the bed closest to the door and I wasn’t allowed to use the bathroom in the room because it was for the other half. So every time I had to pee I had to make sure someone was in the room with Tinleigh or make sure she was asleep. The other bad part was that we were the bad neighbor. I didn’t hear one peep out of the little guy next to us the entire time we were there. I literally heard him call out to his mommy once in the middle of the night. Tinleigh was the loud screaming bad roommate. Lastly, once we were in the room I started chugging water because I hadn’t drank much all day and my ankles were swelling. So during the night I was using the restroom constantly. Those nurses probably had a bet going on how many times I would go. DSCN3974Once Tinleigh was in her bed she pretty much didn’t move the rest of the night. Even during her status checks she didn’t wake up. I slept some. I kept waking to check and make sure she hadn’t moved because I didn’t want that cord in her belly pulling out. Plus every one knows how hard a hospital guest bed is.

Overall the day went better than I expected. She was mellow until she started fighting sleep. I believe that because Gage has a button her getting one was just normal to her.

She accepted it.

To be continued…

January 19, 2014 Posted by | LIVING, Tinleigh's allergies | , , , , , , | Leave a comment

Here we are, I can’t believe it.

I remember when the allergist first told me about eosinophilic esophagitis. “It’s an allergy disease, you treat it with steroids and then you will gradually get eat regular foods again.” I thought oh that’s not so bad. We’ll get rid of all these allergies and everything will be fine. I then remember going home and finding out more about it. I read about kids with feeding tubes because they were so allergic. I watched videos and cried for those kids. Never did I think that would happen to us.

Tonight we told Gage he’ll be getting a feeding tube. I told my 4 year old he can’t eat food anymore because his body has become so allergic.

My sister-in-law ordered Gage a Tubie. It came today. Just in time for us to tell him before meeting with the surgeon tomorrow. 

The dog has a button just like Gage will get.

It honestly ran a chill down my spine when I first saw it. The thought of that sticking out of Gage’s belly. I know he needs it, he needs the nutrition to help him grow big and strong.

We started our talk tonight by just giving Gage the dog. He was so excited. We told him to check the dog out. For the first 5 minutes neither he or Charlie noticed the button. In the meantime Tinleigh was screaming at the dog on the other side of the ottoman. I finally had to tell the boys to check the dog out and find something special about it. Charlie discovered the button first. I explained to them that the dog has eosinophilic esophagitis just like they do. I then went on to explain the dog is allergic to everything, so to get what he needs to grow he gets his “milk” through a tube and it goes into the button. I then went into asking them if they remembered when they were just scoped and told them we the doctor called me with the results. This is when I choked up. I couldn’t get the words to come out of my mouth. I just couldn’t tell him. I looked to Nathan. He was the same as me. Right at that moment Charlie asked where the tube was to go in the button. I jumped right up and went to get it. Wiped my eyes quickly and sucked it up. Returning with the tube we tried to figure out how it worked. I managed to blurt out that Gage and I were going to see the doctor tomorrow and he would tell us how the tube goes in there because Gage was going to get a button just like his dog. Charlie instantly started getting upset and said “Oh I’m sorry Gage.” I said no Charlie it’s ok. It’s going to make Gage’s muscles big and help him grow. Gage grinned. I kept telling Gage that his esophagus just doesn’t like food right now. Charlie keeps trying to interrupt with “oh no I have bad news”. Nathan tried to quiet him as did I. You never know what’s going to come out of Charlie’s mouth. Finally Charlie couldn’t take it anymore. “Guys I’m sorry but this means we can’t wrestle anymore.” I let them know that they wouldn’t be able to wrestle for a while. Gage insisted that meant 3 weeks. I just went with it. Tinleigh is still screaming at the dog and now has a hold of the tube trying to put it on like a necklace. They overall didn’t have too many questions. I felt good. The speech I had planned in my head was nothing that came out of my mouth. What did come out of my mouth worked perfectly and that’s all that mattered.


Gage named his new friend Sarge because he is a police dog. Gage also played the I’m nervous card at bedtime. The typical 5 minutes after we put him to bed he comes out and says why do I have to get a button? I had him come sit on my lap and just said because your body doesn’t like any food right now. He then says “Oh, can I stay up?” He’s a sales man just like his daddy. Nathan almost laughed himself off the couch trying to hold it in. I had to turn on the hard mom face and shew him back to bed.
So tomorrow I get all my questions answered by the surgeon with Gage on my side. I’m sure I’m more nervous than he is. I hope it stays that way though. I don’t want Gage to be scared.

November 7, 2012 Posted by | Gage's allergies, LIVING | , , , , , | 9 Comments

   

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