Saturday, June 25, 2016

Evie Ruth

The first time I held Evie I knew she was special. She was born blue, not breathing, and even after they got her to breathe she hardly cried. She looked at me with her big eyes and I just fell in love. She was the best baby. When she was 10 months old I gave her some scrambled eggs. Her whole body broke out into hives and I had to stab her with an epi pen. It was terrifying. That began our journey to find out what the heck was wrong. Evie spent most of the first 2 years of her life with hives all over her body. I lived at the ER, doctors office, and the allergist. It was so frustrating. No one could tell me what was wrong with her.

I remember having fights with the allergist who told me "nothing is wrong with her, she just has ecema". I would full on scream at him. Until one day, I walked out and walked into my pediatrician without an appointment and sobbed, begging her to help me figure this out. She had no idea the allergist was being such an jack hole and immediately calmed me down. After blood test after blood test, skin test, all the tests, our pediatrician sent us to a rheumatologist at Primary Children's Medical Center in Salt Lake. She was really great and talked to us about what she was 99% sure was going on however, she didn't specialize in that so she sent us to one more doctor. At this point I was just coming to the realization that I may never know what was wrong with my baby. By the time we met Dr. Firtz at the immunology department at Primary's we had an answer. He was an immunologist that specialized in what we know now is Evie's autoimmune disorder. Evie has something called idiopathic urticaria. Now, usually this only effects adults 20-40 and eventually goes away. When you google it, it seems like not a big deal at all. You take some meds, everything is fine. But there is a tiny 1% of kids that get it and she has it. Basically, he explained to me, what happened is her body developed an extra set of negative cells that attack all the positive cells. She essentially doesn't naturally produce antihistamines and also doesn't naturally produce Vitamin D. This means she is allergic to everything. We have been very very lucky. Once we were able to get correct medicine to her, she had 2+ really good years. You never would have guessed anything was wrong. She gets sick REALLY easy but, besides that, we were fine. When she got sick, like a cold, she would have a really hard time breathing and she was diagnosed with asthma but, we easily controlled it without a problem. 

Fast forward to 3.5 weeks ago. We decided that we needed a break and left for Utah very last minute. It was such a wonderful vacation for the kids. The first thing we did was go to Moab to play at Sand Dune Arch. The kids had a ball. We were with cousins running around and having a blast. The very last time the kids rand down a very tiny incline, she fell in the dirt with her cousin Isla. I noticed that she was spitting up dirt and so I assumed she had face planted in the sand. It wasn't until she looked up at me, grabbing her chest, and throwing up mucous in the sand that I realized she was having an asthma attack. She couldn't catch her breath. I tried to calm her down but she was really struggling. I started to freak out and Jamie carried her out of the arch to the car where we had to bribe her to use the inhaler. I was terrified. She had never had an asthma attack before. 

Over the next two weeks she had 4 more attacks. Twice while she was sleeping and one of those time she stopped breathing all together and I had to wake her up and take her into the bathroom for a nebulizer treatment. I was so worried. She just couldn't catch her breath. On Tuesday night, the night before I was to fly home, she had another attack in her sleep. I had to drag her to the bathroom where she was still half asleep and hyperventilating because she couldn't breathe but also didn't want to do the nebulizer. Her whole body was in hives and so I tried to give her a benedryl to calm the hives and she chucked the cup of water at me while screaming and throwing up because she couldn't catch her breathe. I finally finally shot three puffs of albuterol into her mouth while she was screaming and that calmed her just enough to get her to take the nebulizer. It was by far the scariest attack. I didn't know what to do. 

On Wednesday we flew home and got to see our daddy. On Thursday I sent a message to our Pediatrician Dr. Cooper as soon as I got home. I let him know what was going on told him I would call him to set up an appointment sometime next week when Beau could be there. I went to bed Thursday night feeling anxious but, nothing too bad. At 6am Friday morning I was awoken by Evie shaking me as hard as her little body could and she was throwing up on the side of my bed. She was crying saying "mommy I can't breathe, my chest hurts, I can't breathe" The nebulizer was still packed so I picked her up and set her downstairs on the couch while I dug through our luggage trying to find the medicine and machine. I finally found it and got it to her. I just started sobbing. What was I suppose to do now?  

So I called the doctor, who is in Pennsylvania, and he got us in for that evening. I loaded up the three kids and drove straight there. When we got back Dr. Cooper looked at her (she had really blood shot itchy eyes which apparently is something she will struggle with the rest of her life because her body can't fight off the itch) and he listened to her lungs. Then, he sat in front of me. I will never forget the look on his face. I went through with as much detail as I could everything that had happened. He said to me "unfortunately this is the tip of a huge problem that we just don't understand." Basically, her lungs are not able to support her body anymore. Between her autoimmune and her asthma, she doesn't stand a chance. Think about when you start sneezing because of mild allergies. It's hard to breathe right? Your airwaves are trying to battle back the allergies from getting into your lungs. Now, imagine you have no natural blockers and you are allergic to everything, including the air you breathe. And, your lungs are already weakened from asthma. That is essentially Evie. Dr. Cooper basically told us because this came on so fast, we are probably just at the beginning and it's going to get worse from here as we figure out the depth of the problem. Our main goal is to train her lungs how to breathe even when they don't want to.

So what now? Where do you go from here? How do I sleep at night knowing that she could stop breathing in the middle of the night like she already has twice? Do I hook her up to a CPAP machine so if she does, an alarm goes off? Do I sleep on her floor? What is she has an asthma attack and Beau is on duty and I need to rush her to the hospital? How do I do this alone?

Dr. Cooper prescribed 8 different medications that she has to be on daily. 3 of which are steroids for breathing, albuterol, and 4 antihistamines. We are on a very strict schedule for medication including waking her up at midnight and giving her albuterol and flovent just so she can make it through the night. 

How do you explain to a 4 year old, who has more energy than she knows what to do with, that she can't do the same things as the other kids? How do you explain to her that she is so tired from walking in the store because she isn't getting enough oxygen to her brain? I never want her to feel like she doesn't have the same opportunities that her brother and sister are going to have. But, I also never want to watch her struggling for breath. We are hopeful. If we can get control of this over the next four month, we can wean her off of two of the steroids which would be awesome. We love our baby girl. If I could, I would take it away from her.