LIVING

With EoE, Allergies, Asthma and a G-Tube

Va·ca·tion

The Oxford Dictionary defines vacation as:
NOUN

  1. An extended period of recreation, especially one spent away from home or in traveling.

I define a vacation as a time to escape the reality of our daily life. The allergic reactions, sickness, doctor appointments, limbs sliding out of place, strange rashes, making 50 meals a day and school.
A girl can dream right?
As the week grew closer for spring break I was getting super excited. I envisioned myself of the beach, the kids playing and everything else magically disappearing.
What actually happened…
We’re going to start 5 days before. I began packing. I had a free weekend day with no baseball and the house was clean. So I was going to tackle the long list of what needed to go. Nathan and my mom both laughed at me when I said I was going to get it knocked out. My response “Hey, you never know what my week is going to bring”. The first half of the week went surprisingly smooth with only one doctor appointment.
Thursday morning I woke up feeling dizzy. I got up and got the 3 big kids out the door to school. As I got their lunches and feeding tube bags ready I stumbled sideways a few times. It was really strange. I had a lot to do that day, our flight was at 5pm. I would need to pick the kids up around 1:30 to get to the airport an hour and a half away.

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I decided I needed to lay back down a while and see if this dizziness went away. I set my alarm for an hour and went back to sleep. When I got back up the dizziness hadn’t gone away. I tried to start packing some last minute things but I just couldn’t shake it. The room was spinning. Then I started feeling nauseous. I laid down on the couch and the room spun around me. What in the heck was going on? So I called the nurse. Explained I had no time for this and asked how to make it stop. She had me take my blood pressure, which was high, and advised me to go to the ER. I called Nathan home from work and by 11 I was in. After running an EKG, checking blood work and checked my blood pressure lying, sitting and standing nothing came up. The doctor came in and did some neurological tests. Fine. She began asking me about my ears. I told her I have been having ringing in my ear for a year. Ding ding ding, I have vertigo. She gave me some printed out exercises along with some Meclizine and Zofran then sent me on my way by noon. Fastest ER visit ever, they were awesome. Still dizzy and unable to drive Nathan had to take us to the airport. I managed to finish packing and we made it right on time. Good thing I started packing early.
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Once we got to the airport I let the kids pick out candy and a drink because WE WERE ON VACATION!!!!! About 10 minutes before we got the on the plane Layton started coughing, and coughing and coughing and coughing. What the heck? We got on the plane, I quickly wiped everyone’s seat down as the other passengers enjoyed watching my circus get situated, and Layton was still coughing. At this point

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she was constantly coughing. As I’m still trying to figure out what needed to stay in our seats and what needed to go overhead I just automatically grabbed an inhaler and had her take a couple puffs. I will admit, it was not her inhaler because she doesn’t have asthma. I knew though something was definitely wrong and we were getting ready to go on a 3 hour flight. As I got our things into place and buckled myself in I realized she was still coughing, the inhaler did nothing. The door was starting to close so I quickly TOLD the flight attendant I had to get some Benadryl out of the overhead compartment. I gave Layton a hefty dose and with in 10 minutes she was fine. This only leaves me to believe Layton is allergic to starburst. This was not a good start to our vacation.
Upon arrival of my parents place, in the dark, Charlie found a baby lobster in the first 5 minutes on the “quick look at the beach”. I love him.

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The next day we did our typical morning walk on the beach. Followed by lunch then swimming. That evening we went to dinner. Charlie ordered the alligator nuggets and fries. Gage was able to eat the bread on the table and got some butter noodles. The head chef told me they had disposable aluminum pans and they were able to broil Tinleigh some Mahi-Mahi. Layton had fries I think. About 15 minutes after sitting down and getting our drinks Tinleigh says to me, my throat is tight and it’s hard to breath. I took a deep breath, looked around the table gathered my thoughts along with the emergency bag and we headed outside for fresh air. Her airborne allergies followed us to vacation. Apparently they didn’t get the memo. Luckily the place we were at had vibrant Adirondack chairs all over out front for people to hang out in while waiting on a table. We were about to make this our seats for the duration of dinner. I gave Tinleigh her inhaler and mom brought our meals out. Once Tinleigh felt better I let her take a nibble of her Mahi. Unfortunately, it made her throat itchy. As we waited for the others to finish Charlie popped out to show me he had lost a tooth while eating his alligator. Did you know the vacation tooth fairy brings $5? I took my dinner home in a box, the whole situation made me lose my appetite.

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That night while sleeping Layton woke up itching like crazy. To the point I had to get up and give her Benadryl. The next morning she had a rash/ hives down her arms, on her face and all over her torso. What the heck? Sunburn? The pool water? Suntan lotion?

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Her face and arms were bright red. Was it sun poisoning? We went to the store and bought her a long sleeve suit and hat. We got to do the pirate ship that day and we kept her in the shade as much as we could. The itchiness persisted through the next day. So we kept her out of the sun altogether. Still not 100% what was going on. I thought she was starting to clear up at one point. It all came back again though all over her body and nothing made sense as to what it could be. I kept her on bendryl and slathered her in aquaphor along with hydrocortisone. At this point I contacted our allergist to get her in the loop on what was going on. Once we were home I made an appointment with our pediatrician. For the rash and her blockage in her belly he had felt the week before at her 4 yr appointment. That’s when it hit me. Could it be the miralax I had started a day or two before we left for vacation? At the pediatrician’s office we did an x-ray of her abdomen, which when the doctor touched she screamed in pain. Sure enough the x-ray showed impaction in her whole colon. So now she’s doing a clean out, yet still on miralax and still itchy. So I’m officially ruling out allergic to the sun, suntan lotion and pool water. We head to the allergist office tomorrow morning.

Also, while on vacation Tinleigh became extremely stuffy which I thought was her allergies kicking in. She’s been on allergy medicine for a few months now so that seemed strange. Turns out she actually caught a cold. Her asthma kicked in but we got it under control only needing one nebulizer treatment.

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Then there was the day Charlie, who never complains, comes to me and says his chest hurt. I asked if he hit it while swimming, could have been from using his boogie board in the ocean. He told me no, it was more inside. So I gave him a nebulizer treatment and that fixed it! There was no coughing or wheezing, just pain. Strange.

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Gage was the lucky one on this trip. The only thing that happened to him physically was a tumble with a wave on his boogie board. Mentally going to dinner twice was a bit hard. I made that up with some Hershey kisses. The second time we went to dinner we went to a place that we could stay outside so Tinleigh would be safe. Unfortunately, they didn’t have anything but salad for Gage to eat.

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Though I felt like I will never escape seeing my kids go through life with health issues we had a wonderful time. As Tinleigh said before we left, “The beach is a wonderful place to go. All the fresh air helps me breath better.” I think all the fun we had together, despite our few rough patches, the beach did help us all breath a little easier.

One of the biggest highlights for Gage and Tinleigh was being able to get something from the ice cream truck that came everyday.

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We also had a blast on the pirate ship. No food involved and the kids got to squirt all the adults with squirt guns.
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They learned the basics of shuffle board
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We even had a few serious rounds of Florida-opoly
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We swam and played together
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We all just breathed a little easier.

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And the only thing I forgot to throw in the suitcase in my dizzy state was Tinleigh’s underwear.

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March 25, 2018 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , , , | Leave a comment

Tinleigh

Tinleigh is something else. Her one month check up was great she was 50% on everything and growing fine. The screaming though was horrible. It wasn’t like colic where it was some hours one time a day, it was 24/7. When we would have her in public people would make comments on how cute she was and the boys would respond “she cries all the time”. It was weighing on all of us. If she would have been my first baby I would have been done! The doctor started her on zantac. She was spitting up and you could actually smell the acid. So we hoped that would help. Two weeks went by and there was a little less screaming but not much. The doctor then added prevacid. Tinleigh was also covered in a rash. It came with her baby acne. Started on her face and head and got really bad. It then started spreading down her back and chest. Then finally went down her arms and legs. Once it started on her arms and legs her face and head was starting to clear up. So then I thought maybe she had some sort of virus and it was just exiting her body through her extremities. Made sense in my head.
At her 2 month appointment I was shocked to learn she had only gained 7oz instead of the expected 2 pounds. The doctor was very upset about this and mentioned seeing the GI doctor. I didn’t want to go there yet. The pediatrician also wanted to get her on a prescription formula. I had gone round with the insurance when we tried to get the boys the prescription formula two years ago. I told her I didn’t want to do that so she said she wanted to see Tinleigh in two weeks for a weight check. If she didn’t gain an oz a day then we were going to the next steps of the GI doctor and prescription formula. I left that appointment determined to fatten this baby up. I was going to nurse her every 3 hours even if she wasn’t acting hungry round the clock. Then a good friend reminded me to try rice cereal in her bottle. How could I have forgotten about that with reflux babies? I had done it with both of the boys. I also removed diary from my diet. By the time it was time to weigh her again she was a different baby. The crying became less and the spit up was now minimal as long as she had the rice in her bottle. When I took her in for her weight check she had gained 12oz in 14 days. Good enough! My next problem was that I wasn’t making enough breast milk to keep up with her at this point. I tried alimentum for allergy babies. She screamed and vomited it right up after only having 2oz. The doctor said she needs the prescription formula. I asked about trying soy. The doctor said no way, she feared Tinleigh would have allergies like the boys and didn’t even want me to try soy. We were getting no where with getting coverage for the prescription formula and I couldn’t even get a sample of it to see if it agreed with her. So I bought prosobee. I only gave her an ounce at first. Nothing happened. So as she wanted more I gave her more. She is still on soy! No issues.
During this time I had also cut wheat out of my diet to see if her rash would clear up. Low and behold it did! Why wheat? Just a gut feeling. So I have now joined the rest of my family with a restricted diet. Darn is it hard. Nathan did make a point one evening about it. He told me it’s actually harder for me because I’ve been eating wheat and dairy my entire life. He’s never had chicken and has no idea what he’s missing so he never craves it. I accepted his pity.
Tinleigh is now a happy baby and steadily gaining weight. I nurse her on one side while pumping the other. I add rice to the pumped and feed her that after she’s done nursing. If she’s still hungry after that then she gets soy formula mixed with rice. Somedays she wants 4oz of soy after breast milk some days she only wants an ounce. I believe I only produce a little around 3 ounces a feeding for her. She’s on a combo of zantac and prilosec and it works for her. Her skin looks great. She does get the occasional pimple on her face but nothing like she had before.

January 18, 2012 Posted by | LIVING | , , , , , , | Leave a comment

Another Gage Flare Up

So being off corn for 3 weeks Gage flared up again. Face, butt and diarrhea. Poor guy. What could it be this time? We’re thinking oats or rice. Both have a very low positive. So he’ll come off rice and oats until he gets cleared up then we’ll reintroduce them and see what happens.

May 16, 2010 Posted by | Gage's allergies | , , , , , , | Leave a comment

No more instant potatoes!

For dinner last night we had these little BBQ beef cups, instant mashed potatoes and baked beans. I used deer instead of beef because we have a stock pile of deer. Plus, Gage can eat deer, I think. the cups were a deer, bbq sauce, red and green pepper mixture baked over little biscuits. I didn’t cook Gage’s over the biscuit since he can’t eat it. He also can’t eat the potatoes or beans so he had corn. Charlie had the potatoes, biscuit and corn. He can’t have the beans either due to the mustard in them. So everyone has their plate. My husband is strangely wondering what the heck these little things are. The boys are gobbling them down! This is a rarity in my house. So he sits down at the table, starts eating and says “No more instant potatoes”. Now, he said it in a joking manner but he was serious. I don’t respond and keep eating. Gage is chowing down on the deerf mixture then moves onto his corn. After a while he stops eating and starts chewing then spitting food out. That is usually the sign to move onto baby food. So I get out a few jars and start feeding it to him. He then starts scratching his face like a crazy man. I grab a wet wash cloth and wipe him down. Angry, that this happens, I comment what could it be? I then hear “Quit feeding him deer! It’s similar enough to beef. He’s probably allergic to it too.” Frustrated as all get out at this point. I argue the allergists said to feed it to him because it’s not the same protein as beef. He argues about chicken and turkey not being the same but how he can’ eat either one……..

After this dinner mommy needed a beer. Too bad we didn’t have any.

I’m trying really hard to make Gage’s meals similar to ours, basically making two dinners. I’m so limited on what I can make. Without chicken there just aren’t as many options. Now, I’m also cooking healthy heart type meals since we have some cholesterol issues.

See where this blog is going yet?!

April 28, 2010 Posted by | What's for dinner | , , , , , , , | 2 Comments

   

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