LIVING

With EoE, Allergies, Asthma and a G-Tube

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!

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

March

It’s March already! How is that even possible? The days have been flying by. We don’t seem to make it through a week with out seeing a doctor of some sort.

charlie.jpgCharlie just finished up his last week of physical therapy for his shoulders. The physical therapist that examined him has connective tissue disorder. She knew exactly what I was talking about when I brought up Ehlors Danlos. She did some flexibility measures on him and said no doubt he has some form of it. The biggest red flag being his shoulders sliding out of place. So now we’re armed with home exercises to continue to strengthen his shoulders up. He’s heading into baseball season now and we hope they stay in place for the whole season. I imagine we’ll be back to the PT department in the future as his hips are just starting to slide out as well.

gage.jpgGage gave us a nice scare a few weeks ago. He came to me and told me his shoulder blade hurt. He was throwing a ball around and I told him I doubt it hurts very much. I felt and poked around a bit to see if there were any bruises. Then I felt a very hard, nonmoving, lump right on his shoulder blade. So off to the doctor we went the next day. The doctor told me there is a definite bump there but he wasn’t too concerned. He said it’s where the muscle and tendon attach to the bone. Because of his rate of growth the bone is over compensating and forming this lump. We are keeping an eye on it and checking it every couple of weeks to watch for growth. We’ll go back to the doctor if we see rapid growth or for a 6 month check up on it, which ever comes first. On a good note he’s gained the 6lbs back he lost! We were having some struggles with hooking up to his feeding tube, he only wanted to eat food. I think letting him see that he wasn’t getting the right nutrition and weight loss helped him to be able to understand just how important that feeding tube is. Also this month Gage’s archery team made it to state finals. Lucky me, I was nominated to be the parent who got to ride along on the 4 hour bus ride. Lucky Gage, he got to ride the bus with his friends and stay safe! Up next, baseball season.

tinleigh.jpgMiss Tinleigh is loving school more that a kid should. Which is a good thing. She’s definitely thriving there. We had her long vision therapy appointment for evaluation on how much and what they will do to help strengthen her eyes and keep them from turning outward. When I had her at her 6 yr old check up the nurse and I both noticed her good eye was turning out as well. She is officially diagnosed with intermittent exotropia and oculomotor dysfunction. Tinleigh is having a rough time with all the colds and viruses right now. I expected her to have a rough year with all the new germs since she’s never been around a lot of other people. She also seems to be having more and more incidents in the evening when we cook dinner. I’ve watched her react to beef, pork and chicken now. Cooked dairy is still very bad for her as well. She now tells us her throat is tight and she becomes more and more stuffy along with coughing and watery eyes. I had started her allergy meds and qvar inhaler a month ago in hopes of building up her system so we could try getting her into the school lunch room towards the end of the school year. That way she may not have to sit in the nurses office during lunch while she’s in the 1st grade. If dinner time at home is going badly I worry so will school lunch. Her ankles have started giving her troubles again just as softball season starts. Time to get back into some at home physical therapy!

layton.jpgLayton is 4! I hate how fast the time is flying by. We had her 6 month check up for her toe walking and orthodics. Though she is staying flat about 80% of the time when she’s barefoot, we now have to work on her ankels. They’re not as strong as they should be because the muscle that runs down the front of the lower leg isn’t strong because of the toe walking. So now her ankles turn inward. We’re awaiting orthodics to call for something new for her. Layton has also been telling me daily she feels like she’s going to puke or she feels like she has guacamole in her throat. This began back in November and is slowly been getting worse. She has eczema down her torso, around her elbows and upper thighs. She’s also been having some bowel issues. We’re trying to clear that out and hoping that’s the cause of nauseousness. Her little cousin Ellie with EoE also has these issues.

Just to touch on Nathan a bit, he’s been in the emergency room. The doctor has discovered he has diverticulitis with a possible addition of Crohn’s disease / IBS. As we learn more about that and how to adjust his already limited diet I fear he faces a feeding tube down the road as well. We pray for now though we can get things under control. He has had 2 bouts of diverticulitis in 1 month already so we need to get things figured out quickly.

On a good note we got the kids into Cincinnati Childrens eosinophilic esophagitis clinic in Ohio. We head there the end of April. The bad thing is they only take 2 new patients a week so that means two trips. After that they will see them all at once if needed. We’re very excited. It’s four days of appointments. First day is scope day. Second day is bone density scan, which they’ve never had, along with behavior medicine. Third day is a tour of their research lab and we meet with the allergist. I’m really hoping to get some better answers for Tinleigh from the allergist while were there. I’ve requested someone that specializes in mast cell and asked for a certain test to be ran on her. They will also be evaluated for connective tissue disorder. The last day we meet back with the GI doctor, find out the results of the scopes and get a game plan together. We may also meet with nutrition.  

Why are we going to Cincinnati? We live in between Denver and Cinci where the top researchers are located. Having family in Ohio that can help us out when we travel just made more sense. Cincinnati does have access to trial drugs which we may be interested in trying down the road. We also want to help with their research in what ever way we can to hurry up and cure all kids with eosinophilic diseases.

The most exciting part about us going to Cincinnati is the phone call I received from Wings of Hope telling me that they would help fly us to and from Ohio for our doctor appointments. Wings of Hope is an aviation nonprofit organization which helps communities worldwide become more self-sufficient through improved health, education, economic opportunity, and food security. It was founded in 1962 in St. Louis, Missouri, and currently conducts operations in 11 countries, including the United States. The organization was nominated for the Nobel Peace Prize in 2011 and 2012, holds a 4-Star rating on Charity Navigator and is a GuideStar Gold Participant. In 2015, 92.3% of the organization’s budget was spent on its program services. We are so beyond lucky that they can help us with our travels. If not then we’re looking at a 10 hour drive one way, plus stops.  Things are definitely falling into place as we make the change to new GI doctors. I am still sort of shocked that Wings of Hope will be able help us with our travels.

March 20, 2018 Posted by | Charlie's allergies, Gage's allergies, Layton's food exploration, LIVING, Tinleigh's allergies | , , , , , , , , , , , | Leave a comment

   

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