LIVING

With EoE, Allergies, Asthma and a G-Tube

The Results During Thanksgiving Dinner

We had Thanksgiving dinner this year. Something we haven’t done in I don’t know how many years. I was nervous, but excited. We made sure there were safe foods for the kids to have so they felt fully included. We also took steps to make sure they didn’t have anything that would cause them to have an allergic reaction. So much food, so much anxiety.

The girls learned how to set the table. They thought that was awesome. 20181122_092635.jpgFamily all arrived and dinner began. I made plates for all of my kids. It was really a big deal for all of them. Charlie had never had stuffing before. He loved it. This was also the first time he had turkey in probably 8 years. Mom made a ham so that Gage was able to have ham instead of turkey. He also got to have stuffing. Not his favorite. This was Layton’s first Thanksgiving ever at age 4-1/2. She of course wouldn’t eat hardly anything.

20181208_161955.jpgAs I made Tinleigh’s plate my emotions got the best of me. She had green beans, corn and a baked potato. We also scoped a little homemade strawberry jelly into a tiny cup for her. I began crying as I scoped it all onto her plate. I was so happy for her. Excited she had this many foods in her diet. I was also so sad that this is her life. Will she have more Thanksgivings like this in her future or is this her first and last? Things that race through your mind that you know you can’t dwell on. I wiped my tears and set her plate in front of her. She grinned ear to ear. She was so excited to just sit with everyone and have a big plate of food.

Just as I was starting to make my plate my phone rang. It was Cincinnati. So of course I answered. It was a doctor calling to tell me that both Gage and Tinleigh had passed their scopes. Well that really got me going. I was shocked and asked him to repeat the results. He confirmed he had said they both passed. I was over the moon happy for them. I got to announce to the table that they both had passed. That meant that Gage’s gunk and snot is not from EoE and he can continue eating with his steroids. Tinleigh passed eating all fruits and vegetables and the steroids are working for her!

It was really the best Thanksgiving ever!

 

December 11, 2018 Posted by | Charlie's allergies, daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , | 1 Comment

Scope Number 3 in Ohio

Off we went. Six humans, one bearded dragon, 3 dwarf hamsters, plus one more on antibiotics. We made the days long journey to Ohio, dumped our stuff at my parents house then Nathan, Gage, Tinleigh and I headed back out the next day to Cincinnati for their scopes.

Gage was going to be scoped to check and make sure his steroids were still working. He had been a snotty gunky mess since summer. We weren’t sure if it was Ige allergies or his EoE flaring. Tinleigh was being scoped because she had started steroids 3 months prior along with all fruits and vegetables she isn’t allergic to.

As we packed up and left Tinleigh was crying as she had been for 2 weeks prior when she learned scope time was coming. We assured her everything would be okay and distracted her with different thoughts.

My kids have stayed at hotels so many times, but it never gets old. They love it. Which in my book is a plus. It makes them happy and they feel fancy. I want these rock stars to always feel that way.

We arrive at the hospital the next morning and begin the normal check in procedures. Tinleigh is just fine. She had cried before bedtime so I was happy to see her smiling. We moved into our room and went through the million question interview as we always do. Gage and Tinleigh were happily distracted on their tablets.

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Gage gowned up, climbed on the bed and received his loopy meds. He giggled and laughed as the effects set in. I walked with him into the OR. Kissed his head and held his hand as they put the IV in and drew blood. Then he was off to sleep. I made my way back to our room and opened the door to find Tinleigh sitting on Nathan’s lap crying. Not hysterical, but weeping and very upset her time was about to come. I got her onto the bed and convinced her to change her shirt into the gown. The anesthesiologist came in with a syringe and extension so we could administer a new cocktail of drugs in her tube. At first she covered her button and refused. We gently told her things would be okay and she let the doctor push the drugs into her button. She cried as the medicine began working. I hugged her and held her tight kissing her and whispering that everything would be okay. The doctor came in with Gage’s update and I knew it was go time. I released Tinleigh to find she had fallen to sleep. The nurse started to move the bed and Tinleigh didn’t flinch. We wheeled her down the hall and for the first time ever Tinleigh slept during this process. I felt relief coming over me seeing this new drug cocktail was working. They pushed her into the OR, placed the laughing gas mask on her face and began prepping her arm for her IV. Her little eyed popped open. My heart sank. She began trying to yell at the doctor. Her words were muffled by the mask. Tears fell from her eyes as I got right down in her face so she could see me. I repeatedly told her she was okay. She was frozen, couldn’t move, but was definitely trying to communicate with us. It seemed like forever but was probably 1 minute before the doctor drew blood then administered the anesthesia. I kissed her on the forehead and left the room.

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When I met her in recovery she opened her eyes and said what happened? I asked her what she remembered. She asked if she fell asleep. I told her she fell asleep in the room before we wheeled her back. She didn’t remember at all. I was so happy! Then the anesthesiologist popped in. He asked how she was. I told him fine and that she doesn’t remember a thing. He then informed me that in all his 26 years, adults and kids, he’s never had anyone be able to form words while on that combination of drugs. I said well, now you’ve met Tinleigh.

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Later in the hotel I recorded Tinleigh telling me that her scope was a piece of cake and she liked the new medicine. Also, that next time she won’t be scared. This I will use before her next scope to remind her everything was okay.

So we now have a bit of confirmation that Tinleigh’s body doesn’t metabolize drugs the way it should. What if in the future she ends up at an emergency room with no one to tell the doctor she needs extra drugs or certain ones to knock her out. I need to discuss this further with an anesthesiologist. Just another task on my list of things to do.

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The next day Gage had a 20 min blood work procedure done. We needed to test his cortisol function. This is because he is on such a high dose of steroids to be able to eat plus for his asthma. The steroids can cause the cortisol to stop being produced.

He passed!

December 10, 2018 Posted by | daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , | Leave a comment

Down in the Dumps

20181027_203530.jpg“Why is my life so tough? Am I a bad kid?”

 Wow, that note from Tinleigh blew me away.

Broke my heart.

Scared me.

Made me face a new reality that we must face having a chronic lifelong illness.

It really upset me realizing the older they get it’s probably going to get a lot harder emotionally. I feel like it’s my job to make it all okay.

Tinleigh knows scopes are coming up and she’s anxious. She’s mad. She’s very upset about it. She HATES the IV. She’s a girl that likes to be in control. That comes straight from me. So, I’m certain getting an IV then being put to sleep is so hard for her. She’s not in control of any of it and it’s all happening to her.

Her most recent fit was when she slipped me this piece of paper with her little words. So, we sat on her bed and had a talk. It’s frustrating. We’ve been doing this for SO LONG that you would think something like a scope would be routine for her. Although the timing is routine it’s like a whole new experience to her every time. I reminded her that the last 2 times she told the Doctor that it was a piece of cake when we were all done. She of course argued with me and refused to believe she would say something like that. Then she asked me “Why do we even have to get scoped?”. That stopped me in my tracks. Even though we’ve been doing this since she was a baby she didn’t understand why. She knows the words EoE and anaphylaxis, but the definitions were a muddy mess. Tinleigh didn’t realize they were 2 totally separate issues. I had to re-explain EoE and why we needed scopes. Which of course didn’t make anything better, but now she understands why.

20181128_173519.jpgSince starting Tinleigh on steroids we’ve seen a huge change in her. It’s so ugly. She does just fine at school. She’s her cheery little life is amazing self. At home though, we’re on eggshells to not set her off. Being the strong headed little spirit she is once she goes off the edge it’s a battle. It could be anything from one of the other kids upsetting her to me telling her no. She will argue and fight until she’s blue in the face. She screams and grunts and cries for an hour. It’s not her though, it’s the steroids. She can’t control it. It’s the steroids that wrote that note. What do we do though? She can eat so much right now. She’s so happy about eating. We can’t take it all away.

That note though. As a mom with 3 kids having chronic illness, I wasn’t prepared for that. I thought we were doing pretty good. Having a positive outlook has always been our goal. Maybe it’s going to take more than that. Is there a book for moms on all this? How to handle each phase of life while dealing with chronic illness? I’m not even sure there’s a book with how to deal with phases of life while having “normal” kids.

20181014_215251.jpgGage has been down in the dumps for about a month now. He doesn’t say much, won’t say anything when asked. He just wants to sit in his chair. Nathan, Charlie and I all sense it. He’s quick tempered now. That has never been his personality. We wonder if the high dose of steroids he’s on are affecting him. We know a few friends with EoE that couldn’t do the steroids. They cause them to become angry and turn into little monsters. It’s really a tough call though. We started the steroids so that Gage and Tinleigh could eat. We wanted to make them happy again. However, the steroids could be making them angry. If we take them away, they’ll be back to little to no foods and be very sad again. Do we endure the moodiness and let them eat? Or do we selfishly take away the steroids to see if we get our loving happy kids back? Would they really be happy though?

We meet with our GI this week for scopes. Steroids, anger/depression and options will be our focus topics. I must get things figured out for these two kids. 20181204_193236.jpg

December 9, 2018 Posted by | daily life, Gage's allergies, LIVING, Tinleigh's allergies | , , , , , , , , , | Leave a comment

   

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