Drowning in paperwork

Paperwork, bills, schedules, meetings and more paperwork - it's never ending in our house for all Annabelle's needs. Spring is the time of year a lot of Annabelle's medical necessities expire and must be renewed. Beside all those items on our agenda, I am also scrambling to finalize the paperwork process to getting her help. 

Filling out paperwork should be simple, but for Annabelle it isn't. There are SO many questions that are difficult to answer.

Does the child have a seizure disorder?
-No. she does not have a diagnosed seizure disorder but she has an extensive history of seizures.

List allergies and the reactions to them.
-That's difficult. She's never had a real diet. She has a limited diet and we have no clue if it's affecting the disease but were *pretty sure* she isn't have an allergic reaction. A year ago, 100% of our tested foods came back positive for an allergy. This year, zero came back positive.

Give a brief history of your child's symptoms.
-Brief? Gracious! I could write a novel! Brief is impossible. What is most important to share? Our past concerns that may/may not be present today? = inability to maintain body temperature, constant seizures, zero growth, extreme lethargy, liver failure, monthly vaginal bleeding... i could go on
Or should I explain our concerns immediately? = Muscle weakness / fatigue, inability to control her disease, manifestation of bowel issues including impaction/constipation/building of stool that will not move without intervention, blood ammonia levels, etc.

Then we move onto the section where they began to ask, in a very discrete way, if my daughter is depressed... I remember answering these questions and bawling my eyes out almost two years ago when I realized how depressed my baby had become. At not even two years old, Annabelle was so clinically depressed she wouldn't speak, eat, communicate, crawl (couldn't walk) or cry. If she was frustrated she was scream and continuously beat her head into the ground. After months of therapy, she began to smile again. But as a parent, it's the hardest thing to realize your infant is so unhappy and you cannot do anything about it.

 

Two years later, the paperwork is still not easy, but we have come a long way.. the questions they ask, really sting. They're honest questions and a fair means of judgement for a child that is battling a life such as Annabelle's. But as her parents - this is hard. I cannot imagine how hard it is for a toddler. I am amazed at how well she carries herself at the ripe age of 3.5yo - I am in awe of her courage and strength when she has every right to be bitter with the world.



I want Annabelle in this hospital immediately, but we are at the mercy of so many hospitals and doctors to get there. We must have letters from anyone we've ever worked with. We need so, SO much documentation that is makes my heart crumble at the timeline it's taken. I pray we have everything together and we receive everything we need soon.. it's been nearly a month of this process and I want everything completed! I want so badly to hear those words "Annabelle is accepted and we want to see her". We need help and answers for her so badly, I just wish it were a faster process.

We are still waiting on:

• Pathology slides from every endoscopy and colonoscopy she's ever had performed. Annabelle has had 5 endoscopies and 2 colonscopies between 3 different hospitals. Which means we have a whole lot of begging and pleading for medical records from multiple places.

• ALL GI Records, including:
• Personally written physician letter
• All office notes
• Reports and pathology from any/all other GI procedures - we have about 100
• Anesthesia records 

• Allergy records
• Physician letters and notes
• Skin testing
• Patch testing
• Lab records 

•  All other records for procedures performed, we have:
• Xrays
• MRIs
• Bone Age Scans
• EEG's
• Genetics
• Nissen Fundoplication surgery

• Primary Care Physician
• Physician letters 
• office notes
• growth charts
• blood work
• etc

Obviously there is much more but fortunately I have FLOODS of paperwork on my own already, including all our in-home nursing care notes and documentation, I have a lot of personal notes written by doctors and specialists etc.

Until we have all this information back, from literally 16 different resources, we cannot move forward. I wish we could say we are patiently waiting.. but we're not.



Annabelle is beginning to show signs of losing energy and going downhill. She has spiked a rapid decline in almost 10months, but my heart and mind is constantly fearing it. She is definitely losing energy. She is becoming more and more verbal, telling me that something is wrong and she doesn't feel good. Her body is becoming weak to the point she cannot run and play for very long durations without collapsing into exhaustion. Her bowels are becoming harder to manage and her little body is showing signs of a major shift. If she goes hours without a feed (because she BEGS not to hook to her feeding pump), her color rapidly leaves her skin, she turns heavy yellow/orange and splotchy. She gets so very weak and can hardly keep her eyes open but she cries and begs for 'help mommy'. The threshold for stabilizing her body is getting difficult... not unmanageable but significantly more difficult than it has been, which gives us validation that we need to move faster than Annabelle deteriorates. Annabelle is so so strong, but I do not want to test her little body any more than she needs. We need to get to this darn hospital, or something has to give. Riding his roller coaster into the unknown does not sit well with our family. It's terrifying. Our prayers every night are open ended - we don't have clarification on anything beyond 'we made it today... let's try again tomorrow'. I need more than that. Annabelle needs so much more than that. We need to know how to keep our baby safe and thriving. The two of those are not possible for her at the same time. It should be.