This is like a 5,000 piece jigsaw puzzle

Annabelle had such a great weekend last weekend, she was happy, smiles and full of herself. Monday and Tuesday she was appearing to be feeling wonderful so our sitter took both girls to the park Wednesday. They had the best time! Laughing and playing, exhausting energy to ensure a peaceful naptime.

 

I arrived home at usual time Wednesday and Annabelle seemed to be feeling alright, but cranky. I just knew that she would sleep well so we skipped straight to dinner (bowl of Neocate Nutra) and gave her a good bath before tucking her into bed. About an hour later the coughing began. She woke up around 830pm soaked from cold sweats, crying hysterically and coughing and choking so hard it terrified me. She was gasping and unable to catch her breath. The only thing that was running thru my mind was, "Oh please do not get worse! Please don't make me use that terrifying Epi-pen, I don't want to have to do it!" I began to follow our allergy action plan and she calmed down. It all happened so fast and intense, my mind wasn't thinking clearly, I tried getting her to lay back down to go to sleep. Perhaps it was just a bad dream?! (Again, I admit I wasn't thinking very rationally) About 20 minutes after the first episode began, she started again. My heart stopped this time. It can't be an EoE flare (maybe it could, I have no idea!) I was terrified that this was an allergic reaction to something. Once she calmed down this time, I wrapped her up in a blanket and marched downstairs and told AK I was taking her somewhere. I couldn't process any thoughts, where I was going or what was happening, all I knew was that I wanted to be somewhere safer than my house when this started again. She was miserable and I was helpless. I hate that feeling more than you can imagine and it's a feeling that I have to face quite often.

I decided this was likely Kid-Med worthy. I do not like hospital emergency rooms. For many reasons.

1. They're disgusting.
2. This isn't (from what I can tell) life threatening.
3. I am terrified she will be admitted and I don't want my baby away from me or ever poked and prodded for any unnecessary reason. I try to stay away from the hospital at all costs.. we frequent them enough already.

I wanted a KidMed enviornment - emergency care but not an ER. KidMed is a good 35min away so I decided I would give the Patient First in Colonial Heights a shot. I remember they recently had one built and I calculated that would be the closest driving distance from our home in Chester. I knew if she were to have another episode, I didn't have much time to waste on the road.

Once we arrived, we were taken back fairly quickly. Her weight was great! She cooperated for most vitals as she always does and did not have a temperature when they checked. The doctor joined us and seemed less than concerned upon first glance. And then, just as I planned, the third episode of the evening started. That seemed to light a match torch under the doctors butt and she flew into medical-mode. This episode was less exciting than the very first one of the evening, but it was scary nonetheless. They hooked her up to oxygen monitors and watched her oxygen levels drop during the event. I wasn't surprised. She was hysterical and it was heartbreaking to have to stand away as everyone tried to help her. Just as quickly as it began, it ended. We all stood around and kinda scratched our heads. It wasn't an asthma attack, her lungs sound clear. It wasn't an EoE attack, it can't come on strong like this. Allergy? I have no clue. The doctor checked her over and made sure all other easy things were definitely crossed off: Ear infection, strep, etc. She was cleared. I did a pulmicort treatment immediately after the episode in the office and that seemed to calm her ... as calm as you can be aftera round of inhaled steroids of course. The doctor offered to send us to a local hospital for further observation or we could go home. We all know what my decision was. I got home and made her a cup and laid her down. I felt like the trip was a complete waste in a way. But on the other hand, things could have gone south much faster and I guess I am glad I was in a safer place if that were to have happened.

The next two nights were a repeat of Wednesday night. The sitter and I are staying in close touch on what has changed to cause these types of reactions/flares/whatever we want to call them. Our first thought was that it could have been the park that set something off; there were maintenance crews cutting grass in the beginning of the park that day and perhaps the inhalation of fresh cut grass set off allergies and flared her EoE. Then it occured to me Thursday evening, that maybe this has something to do with apnea? (Im scrambling!) She isn't sleeping on the AngelCare monitor anymore now that she is in a toddler bed. Annabelle hasn't had trouble breathing, or remembering to breathe in her sleep for almost a year now! I wonder why it would be happening again out of the blue like this? I called her doctor Friday to mention the past couple nights, and also drop the hint / good news that her weight has been maintaining over the past week! (I like to brag at every given opportunity when it involves steering away from feeding tubes and further treatments..) He called me back very quickly after I left the message with his nurse. He wanted me to understand that breathing complications are a common issue with these children. It could be apnea that is waking her in the middle of the night and she is unable to catch her breath, and now that she is older, it's scary which could explain why she is so difficult to calm down. Or it could be sparatic asthmatic episodes. It would be advisable to put her back on the AngelCare Monitor if we feel as though that helps for sleep apnea and we may need to do a sleep study soon, all this can be something we discuss at our next appointment. On the other hand, if it's true respiratory/breathing issues, the good news is that we are already doing the treatment necessary to give her relief. She is already taking albuterol, pulmicort, singulair and has several Action Plans in place in case of an emergency. There is a nebulizer ready and hooked up both in her bedroom and downstairs with all supplies readily accesible and our rescue squad that is less than a mile away knows Annabelle's history and where our house is in case there is ever an emergency where they are called. What more can I do?

It's things like this that happen and I have no clue what to do in that moment! I feel calm and collected during the storm but I am so terrified that I am going to make a wrong decision on her behalf and be in over my head when she needs help! Way too often I feel as though I don't have the knowledge or skills to be able to take care of Annabelle. She throws me curve balls all the time with her medical care and leaves me scratching my head with eyes full of tears wishing I knew how to help my child! Then I remember.. I am not a doctor, I am not a nurse or a specialist. I do not have a degree or been educated on raising a child living with an Eosinophilic Disease and for that I need to go easy on myself. But at what cost over your childs health, do you give yourself a break? As a mother I should be able to help and console my baby when she is in pain, I should be able to understand what is hurting her so badly or scaring her into tears when she feels this way - and I cannot. It's the worst stab at parenting I've ever felt. It's a natural instinct that a mother should posses and EoE has robbed that from me!