...All I could think about was the morning we were devastated about Annabelle's Eosinophilic Esophagitis diagnosis....
That morning on the way to work, before the phone call came in, I had all the hope in the world for my daughter. I had hope that she wouldn't have this disease, I still had hope that biopsy's would come back normal and she would be 'ok'. I spent those last several days dwelling on the worst case scenario (that we're currently living) instead of appreciating the ignorance of the disease we weren't confirmed with yet. I wish I could go back to myself that day, and all the days prior and tell myself to appreciate the feeling of 'hope and promise' that life as you know it may just be better than your worst case scenario. After that 7:30am phone call, my life has never been the same and never will be. My life was changed that morning forever by the news our Gastroenterologist confirmed by Pathology reports. I can never go back to the way I felt March 27th, because of the news I heard on March 28th.
Driving on 95N yesterday towards MCV, my heart is in a million pieces and my stomach is in knots. I hurt so bad because I honestly have NO clue what a doctor is going to tell me. I am clueless what is going on with my child, the only thing that will bring me comfort is someone to tell me "She's fine!" and all this over.. but I know that isn't a possibility. Anything less than that isn't welcoming to my ears. You never want there to be something wrong with your child, I never in a million years thought it would be mine, and here I am living this nightmare. As much as it's going to kill me hearing the words, I know I need to push hard and find the right doctor to tell me what's happening, for Annabelle's sake.
I take myself back to that horrid day in March. I wish I enjoyed the ignorance of the unknown before the doctor called me with the news. I had reasons to smile and hope, and here I am driving on 95 upset, and I have no reason to be yet. I decided to put on a new hat yesterday. Annabelle was enjoying herself in the backseat. I decided to crank up the music to her new favorite song and the two of us danced like crazy people while navigating downtown Richmond towards the Children's Pavilion Valet. I have plenty time to be upset after I learn what is happening, I can't lose focus on being sad now.. right now Annabelle needs me focused, smiling, and motivated to keep fighting for her. Faking that emotion is harder than anything, but I know it's important. And to be honest, listening to Randy Houser and dancing like a fool with a giggling little girl in the backseat, was much more fun than allowing my mind go to dark places in silence.
When we parked, I began unloading half my car for the appointment: Annabelle's books of medical records, my own personal notes, etc. Diaper bag. Gigi & Lambie. Annabelle that wouldn't walk. My cell/keys and pepsi that was an essential first meal of my day. Mom works at the Nelson Clinic next door to the Children's Pavilion so her and AK met me in the Neurology waiting room as I was checking in and filling out paperwork. Annabelle seemed to be in good spirits :) Sometimes I wish she would look her worst when we see doctors, but you know, at this point I don't ever wish her to have any bad times. I know there is something wrong, her bloodwork and records indicate we have issues.. I pray we only have good times, so I could care less what her face-to-face impression is to a doctor when she is smiling, I never want to wish those smiles away.
We started with vitals and she showed the nurse just how to do everything. Blood pressure cuff, stethoscope (side note. She loves this thing, and the pricey thermometer, she's asking for both things for xmas), temperature, weight, height etc. Did I mention I love seeing my little girl smiling?!We didn't wait long in our room before Dr. Seinfeld came in to visit us. I explained the situation and the story to her, she seemed understanding and concerned, however, she seemed less than helpful for helping Annabelle. Just like every doctor - she doesn't think this is her area and Annabelle needs a Neurologist. My jaw fell to the floor. We spent a good amount of time talking with her and it wasn't all bad, but it wasn't helpful or getting us anywhere either. Couple highlights:
- Birthmarks: She took notice to Annabelle's birthmark on her back and asked if she had anymore. She has several in her head and on the back of her neck. Most all her birthmarks are on her head and fortunately for her, are now all covered with hair.
- Mitochondrial Disease: At first when Dr. Seinfeld offered this possibility, it rubbed me wrong and ticked me off that she would mention it. She threw this at me by saying, "Sometimes we know there is something wrong but we do MRI's, Scans and can't find out what's wrong, they end up with a diagnosis of Mitochondrial Disease.. we don't know exactly what's wrong, we just know their 'Power House' isn't working properly". It made me mad that she said this because I took it as, 'I dont know whats wrong so let's slap the kid with a catch-all label and be done.'.
- She doesn't believe we are looking at something as significant as cancerous tumors on her brain. Annabelle hasn't suffered seizures that we know of, she wasn't showing any signs during the exam at the office. Based on the bloodwork, there weren't any indicators this is what's going on. But on the other hand, we always have to keep in mind that she has an Auto-immune disease that prohibits Annabelle from having textbooks signs for what is going on. Having a normal WBC Count isn't out of the ordinary for these EGID kids. So we have to take it with a grain of salt. We won't know anything until Tuesday's MRI.
- She sympathized and apologized that she can't help get us answers any sooner. Which is crap. If Annabelle were admitted, we would have an MRI scheduled and performed immediately. It drives me nuts when people think I am an idiot in this medical world. Dr. Seinfeld won't admit her because she truly doesn't believe Annabelle's issues are Neurologically related. So much so, she didn't ask us to book a follow-up appointment unless the MRI indicated any abnormalities.
- Brain tumor vs. Brain development. This is the thing that made my stomach sink the fastest. Since the first two doctors mentioned getting an MRI to make sure there 'isn't something there', I have only considered a tumor (and were going to believe, completely benign). I've never considered her brain isn't developing correctly or normally. That isn't something that can't be removed or easily fixed. That scared me. This possibility weighed higher on the scale of possibilities than there being a tumor, under Dr. Seinfeld's opinion. Again, hopefully the MRI Tuesday will tell us everything we need to know.
When I left the Children's Pavilion with Annabelle in my arms. I was very discouraged, I felt like I had another door slammed in my face - another doctor tell me something is wrong with my child, KNOW something isn't ok but still won't put forth the effort into helping her. Dr. Seinfeld wants us seeing a Endocrinologist immediately if the MRI is clear, which was scheduled late yesterday by the Pediatrician - July 9th at 9:30a, MCV Endocrinology. Next after that we will see a Geneticists.
I asked AK to take Annabelle home and I wanted to visit a sweet friend that has a little girl on the Pediatrics Floor, experiencing some similar issues to Annabelle in the GI world. She is seeing a flood of doctors left and right, I am so happy she is getting the attention and help she deserves, it also gives me an insight on what we would be getting if we were also a patient on the floor. If Annabelle were admitted, she would be seeing every single one of the doctors she needs within hours. While I was visiting my friend, she had me speak to the Social Worker on the floor. We chatted briefly the issues I was having with getting Annabelle the attention and help she needs, and she put me in touch with Patient Relations - my next step = I am getting Annabelle a Patient Advocate as we move further. I am done with everyone dropping the ball on my daughter. If nothing else, the next time I have to rush Belle to the ER, we will be seen, get the tests we need and admitted.
I got home last night after my visit and was completely monotone, in shock, upset, feeling defeated again and motivated more than ever. It was quite a combination of feelings, but the result of all of them was that I just wanted to go to bed without eating and sleep the night away. I didn't want to do that to my kids, I've missed Mady and Annabelle was seeming to have a good afternoon so I wanted to make the most of it. I called a friend in a pinch and asked if her little girl wanted to come over and play with Mady - I'll throw turkey burgers on the grill, she offered to bring the wine and we made it happen. The night was great. I was distracted from the day, my house was full of giggles and our friends were next to us.Annabelle started going downhill soon before they arrived, she wanted to be held and not put down. She turned her head away from people every time they would look at her, she pouted and clung tight to my shirt as I sat with her on the couch. I didn't push and we took it really slow and easy with her for the night. Once I watched her temperature for a bit, I laid her down to bed and she went right to sleep. The girls were playing, we had a mini dance party with 4yo's strutting their best moves in my living room and I poured myself another glass of wine and cheers-ed our friends. Around 10:30 - 11pm I heard a scream from upstairs, just like clockwork, something was wrong with Annabelle.
AK brought her downstairs and just her appearance scared me more than usual. Her skin was pale, almost purple, but her cheeks were flushed bright red. It was very odd. She felt very cool and her entire body was shaking. Oh God she was shaking so hard! It took everything I had to keep her still and hold her tight. I asked for a blanket quickly and the thermometer .. we also needed Lambie stat. She laid on me screaming and shaking as I took her temperature, it was fortunately 96. I don't know if that meant it had previously been really low or really high, I had no way of knowing. All I knew is that she was hurting - her face was full of tears and her little body couldn't lay still. She wasn't comfortable in her own skin, she was hurting, she was shaking, she was clearly scared to death as she gripped my shirt as tight as she could, crying into my cheek and ear. I didn't want to cry in front of my friends. In fact, I haven't cried during this entire ordeal yet. I can't let a tear drop because I don't know if they will stop. I can't lose focus. Holding my baby girl in my arms, with dear friends watching me from across the room, the only thing I knew to do was rely on what I do best - sarcasm. "Oh it's ok friends. She's 21 months old, she's just testing her boundaries right now." They looked as entertained at the statement as I was when the damn doctor at St. Mary's said it to me. My poor friends faces showed just how helpless they felt, as I do every single day. We had a room full of people that love Annabelle with all our hearts, we all want to help her and no one can. Annabelle laid there bawling her eyes out until she finally calmed herself down to relax laying on my chest. She was soo tired. I hate nights like this for her. She's so exhausted, you know she just wants to sleep. But she can't, she can't rest because of the pain, she can't relax because of the fevers, she can't smile and play like a normal little girl because she just doesn't have the energy to do it. My God she needs prayers answered! She needs help!!
We got Annabelle back in bed shortly later. She fell right to sleep and repeated the same ordeal during the night, crying and whimpering often every couple hours. This morning she is very tired. Her spells of energy are becoming shorter and shorter. If she wants to play or laugh or annoy her sister, she tries to - but soon after she lays on someone and doesn't have the energy to get up and continue. After repeating this cycle over and over this morning, I finally just laid her down and made her go back to sleep. She needs the rest and sleep, I know she doesn't get it at night like she should. I always want to know for sure if it's just being tired that is making her act this way, or if this is something I should be documenting. Once she wakes up, I will be able to better read and understand whats going on. It's been two-three days since our last symptom presented itself, were due for our next one anyway! (Que the sarcasm and rolling eyes).
I would like to get her out of the house today if she is up for it. I don't take Annabelle out of the house at all much anymore because of the last several weeks issues in addition to her poor immune system. She needs the sunshine and fresh air though. If she seems up for it in a bit, we may try to make a trip out and enjoy the day a little. I know Mady wants to get out too. Heck, I could use the fresh air any chance I get as well ;)
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