Tuesday, April 9, 2013

Interviews and Assessments Galore


Today I had an interview by a lady from Social Services and a nurse from the Health Department. I am applying for an EDCD Waiver to obtain Medicaid for Annabelle. Here's the thing about the EDCD Waiver; I must prove that Annabelle's medical needs are so extensive that if she were not in my care, she would require a hospital / nursing home-like setting to meet all her needs. Instead, she is home with us but as a family, we need home health assistance to help Annabelle thrive, and provide me some sanity. The EDCD Waiver will appointment a nurse to come to our home and help care for Annabelle so AK and I can work out of the home / go to dinner / grocery shopping, etc.

I also need Medicaid. Annabelle's prescriptions, co-pays, procedures, formula are so incredibly expesive we are drowning. Medicaid will help cover those costs burdens to us and allow us to continue getting the things Belle needs to thrive. Such as, I need to pick-up the Pulmicort prescription but it's $435 and I just don't have that right now! I also need to order her PPI but that monthly prescription is also $84 and I cringe placing the call for a refill. She needs Medicaid, but as a household, we make too much to qualify. The EDCD Waiver will guarantee Annabelle Medicaid coverage.

I believe the interview went well. I did a lot of homework ahead of time and had a lot of paperwork printed out for the nurse to review. I answered the questions as thoroughly as I could. About an hour into the conversation, we moved to the section of questions where they began asking about Annabelle's emotionally behavior. Some of the questions were completely unrelated such as "Does she talk about not wanting to live, commiting suicide?" but one question provoked a thought that I hadn't considered yet and it left me with tears streaming down my face, unable to talk any longer.

When Annabelle is working on something, if she can't figure it out, she sometimes screams out of frustration or just drops it and gives up.. not moving onto the next thing, but just drops it and sits with her head down. When she is eating at the dinner table, bite after bite she may cough until she vomits; finally, she just stops eating and gives up. Every picture we have Christmas morning, Annabelle wasn't very interested in opening gifts, but just laying in the floor with a sad little face, wanting to be cuddled up and next to someone (daddy) but just not interested in all the 'happiness' of the event.
For so long, everything she tried to do was just exhausting, she was constantly defeated and she just began to give up. She cannot communicate to us her frustrations so she stops trying. She cannot eat a meal without it hurting her so badly and then vomiting, she just stops eating although she enjoys food. I had a depressed infant. NOTHING breaks a mother's heart like seeing her baby sad and upset. And I reflect back at all the situations and events where I didn't understand her behavior and it is now ever so clear. She was just defeated in this disease. Like a prisoner in her little painful body that can't communicate her feelings or emotions, she just gives up.

My heart absolutely broke for her. Not 10 minutes after we moved past that section of the interview, AK was home with Annabelle and she pranced thru the door with a smile ear to ear and ran up to me in her sneakers that make walking look very toddler-like! She gave me hugs and kisses with a smile on her face and made her way around the room. Ive never seen my baby so happy. Im watching her blossom into the infant / toddler / daughter that I always dreamed she would be. I love her. For everything she has been thru and her fight for so long, I love her even more today that I have yesterday because I see the smile on her face that I have been fighting for her to wear. Ive never seen such geniune happiness in my sweet Annabelle until this past week but I see it now. It's been worth every fear, tear, prayer, worry, countless hours of research, journaling, doctor trips, begging for answers, savings accounts checking accounts, everything. 


1:30pm was her assessment with Infant and Child Connections to determine any developmental delays. AK took her and it KILLED ME not to be there during the visit! He gave me a very detailed report on how everything went however (he's learning what I like to hear.... details details details!). They had two women doing the assessement. 1) Cognitive Behavior 2) Speech. She seemed to do excellent in a lot of areas, in fact, her cognitive skills were almost at a 20mo level! Her speech however, specifically Expressive Speech was at a 10 month olds level and will require speech therapy. I want to discuss the visit a little more tonight with AK so him and I can develop a plan for what we will want out of speech therapy and will call them tomorrow. For the most part, I want her brought up to the level that she should be on naturally, and then I would like to learn how to communicate with Annabelle and teach her how to communicate with me. I believe that right now is the very BEST time to getting her help. She is happy, full of energy and like a sponge. She wants to learn and wants to communicate and finally has the energy and patience without being in pain to do these things. I can't wait to see how fast the speech therapy helps us, Im looking forward to it.


Let's change pages for a second. Can we talk about how much I despise Lincare Medical? 
Here's a reminder why: 
  1. When Annabelle was about 5 months old. I noticed we were getting low on formula. This was Wednesday evening. I called Lincare first thing Thursday morning and asked why I hadn't received my shipment. Everyone was clueless and they promised they would expedite the order. That's great, however, I will run out of formula before the order arrives on Monday, I need cans NOW! The lady over the phone assured me that a dietician would be out to my house to deliver a couple cans tomorrow (Friday). I was learly but I said ok. Of course, Friday afternoon, I never saw a dietician. I called the office and got an attitude from the first girl, shortly after disconnected. Called again and was transfered to who I needed to speak with. I stayed on hold for 10+ minutes before calling back, when I did, they were closed. I called the emergency, after hours number repeatedly and never got a call back. I ended up spending 8 hours calling EVERY SINGLE pharmacy, hospital, hospital pharmacy, doctors office, patient first, kidmed, pediatrician until I finally broke down in tears and didn't know what to do. It was 10:00pm on a Friday night and my baby LITERALLY didn't have any food to last the weekend. I called the CJW NICU and asked for any insight. The sweet nurse dug thru an old cabinet and found ONE can that was expiring that month. She hand delivered it to my house the next morning at 7:00am. She is an angel. The shipment didn't arrive until Tuesday evening and I never heard from Lincare.
  2. After this incident, I began researching ways to find the formula cheaper. We were being billed $3,192/mo for the unreliable shipments and with a quick internet search, I found that I could order the formula from the manufacturer myself, without having to go thru the medical supplier!
    1. Lincare supplier = $95/can
    2. Directly from manufacturer = $35/can
Anywho. Let's move to the present. That was over a year ago and we haven't dealt with them since. Annabelle will now be on formula for a long, looooong time and fortunately for us, we have reached our maximum out-of-pocket for the year, so if I choose to use a medical supplier for the formula, it will be 100% covered, and I won't even have to cough up the $770/mo for the formula myself that we have been paying. Unfortunately, my insurance will not work with Pediatric Connections (another supplier) they will only participate with Lincare. Great. The nurse from Dr. Villalona's office has sent my paperwork to them 3 times in the last three weeks and keeps asking if I have heard from them, I haven't. I called today to ask at the GI Office what I should do, and mid-conversation I stopped, asked for the number and just called Lincare myself. The girl I spoke to first, said that she never received anything, and then later confessed that she did get the information but said she had noted in my file I can get the formula cheaper elsewhere so she never bothered calling me. That was a year ago! So she just chooses to ignore the doctors paperwork that is being forwarded her way? Incredible these people are. I don't know how long it will work out again with Lincare, but I sure do know that they need to get their act together. I can't be the only one having to deal with this nonsense.

Highlight!
The weather outside is ABSOLUTELY BEAUTIFUL! For the first time, we're feeling sunshine and warm days. I couldn't be happier.

Friday, April 5, 2013

The week our lives changed forever

It's taken me a week to update. That is partially because we have been so busy, my head is spinning; and also because I am just too heartbroken to write in words what the last week has done to our lives. Let's recap. Shall we? Hang on tight, it's been an adventure.

Monday, March 25th
We arrived at the hospital at 7:15am, 15min late but in our defense the roads were COVERED in snow. We drove extra cautiously to the hospital with both kiddos in tow. The kind nurse checked us in and right away & we were taken us back to pre-op. I sat down in a chair and held Annabelle in my lap. We undressed her down to her onesie and put a cute baby gown over her. You could tell she knew something was going on, she was incredibly cautious and in-tuned to everything going on around her. Several nurses met with us, explaining the procedure. Dr. Villalona came by to say good morning and explain what would be going on. The anesthesiologist checked in and we determined that due to Annabelle's soy allergy, she cannot receive IV anesthesia, so they would have to use gas to put her under, do the scope, come back up, gas, scope etc. The nurse finally came and picked her up and took her from us and walked down the hall. Mady was a welcomed distraction and I took her by the hand and we made our way back to the waiting room.



I used that time to feed Mady breakfast. The diaper bag was packed with a buffet: banana's, applesauce, zucchini bread, apple, OJ, Milk etc. I played on my phone browsing anything to keep me distracted. I fixed Annabelle a sippy cup, warm, to have ready when she was finished. FINALLY! 45min later she was done and we were told we could go see her.



The sight of my sad, terrified baby was nothing less than heartbreaking. She was laid on her side, SCREAMING harder than you can believe. She couldn't lift her arms or open her eyes but she was hysterical. The nurse asked if I would like to hold her and I begged yes. She lifted poor Annabelle and all her cords/wires, and they moved her bed and replaced with a chair for me to sit. She hardly had ANY control of her limbs/head, she still couldn't open her eyes but eventually she heard my voice and calmed down. I wanted to cry SO hard, and had Mady not been right beside me, equally terrified, I would have. Mady was so tender and sweet, she held Annabelle's little foot and sang her song:



Baby Annabelle, of mine
Everything about you is perfectly fine
I love what you are
and I love what you do
Baby Annabelle,
I love you


Finally Dr. Villalona came to meet and talk with us.

Dr. V: I think that's going to be it.
Me: Really? Ok, so you could tell just during the scope?
Dr. V: Yes, absolutely. I couldn't see much going in but towards the end there was plenty indicators for the disease.
Me: Ok, wow. I really shouldn't be surprised, I mean, the more I read, the more she looked to fit the bill for Celiac's. So should we just start avoiding gluten?
Dr. V: No... no I am sorry Ashley, I believe she has EoE, Eosinpholic Esophagitis.
Me: What?! No... no , really? Are you sure?
Dr. V: Well, let me show you what I saw.

Dr. Villalona then showed me the pictures he took during her scope. The top of her esophagus truly didn't look too terrible (not to my uneducated eyes at least), but towards the end, something looked very, very wrong. Terrible in fact. He told us he would be contacting Dr. George (our allergist) and let her know what he has seen and we should get the biopsy results on Thursday.

Shortly after, once Annabelle was in daddy's arms, she calmed down and we were able to go home. We spent the afternoon kinda in a trance. I didn't talk much, because I didn't want to break down too soon. I did a fair amount of googling the disease, mostly trying to figure out how to pronounce it. The kids took a good nap and that evening we all had different dinners. Mady had what she wanted, Belle had noodle soup and AK and I didn't eat, I just didn't have an appetite. We went upstairs to clean and I got a wild hair that said "let's take down Annabelle's crib and give her a big girl bed". It's now been a week and I am glad we choose to take advantage of her being sick and sleepy because 8 days later she has never tried to get out of her bed. She lays down and goes right to sleep. I am shocked and so happy! She loves it too, it's the sweetest thing seeing my big girl snoozing.

That evening I wanted to go to Target. I stopped at Starbucks and walked around the store for an hour and a half, silent, no phone, just walking and thinking. I went to bed praying.


Tuesday, March 26th
Annabelle was at Kelly's and so tired. She wasn't herself, reasonably so. Kelly kept me updated really well all day but with each text it broke my heart. She said "We rode all the way to Louie's school and back and she didn't take her shoes or socks off. We know she isn't feeling well!" - See, Annabelle doesn't believe in shoes and socks in the car, it's like her personal mission to have them off immediately as soon as you shut her door :)

Around 3:15pm Kelly called me, "Louie has a temperature and a kid in his class has strep. Im running him to the doctor now and will let you know what they say in case you need to find out what to do if Annabelle's been exposed to strep after having her poor throat biopsy'd!" Fortunately he tested negative for Strep and I showed up early to get Annabelle and went home. All day she only drank a cup and a half of formula. A slice of lunch meat and a couple grapes. My throat would be sore too!


Wednesday, March 27th
Sheila came over to watch Annabelle so I could keep her from Kelly's. Of course when I got home the house was a mess but nonetheless Annabelle was safe and away from what was keeping poor Louie sick, but her cough sounded terrible. She only drank two cups of formula and wouldn't eat all day. I tried for dinner to get her to eat and she just wouldn't, I can't force a baby to put food in her mouth so I gave up. We all went upstairs and took baths, I squeezed Annabelle extra tight after laying her down and went back downstairs. I spent most my evening browsing online. Laid in bed early and zoned out trying to watch TV. AK and I watched The Following until midnight and I swore I wasn't going to be able to sleep. I am pretty sure I fell asleep DURING my prayers asking God to please give us good news tomorrow. I prayed the doctor was wrong in what he was seeing, I prayed for a blessing for my little girl that deserves a break.

We skyped with the Lloyds and chatted for a while. It's so nice seeing our friends on a regular basis, via internet or not, it's so nice having that support system. They've been a bigger support than our entire family and then some. They are praying dearly for us, and to be honest, they're a lot more in touch with the big man upstairs than we have been lately, so hopefully he hears their prayers sooner than ours!

Thursday, March 28th - Our Lives Changed
I dropped Annabelle off and talked briefly with Kelly about what the tests may say. I was clueless and couldn't concentrate on our conversation to save my life, but I welcomed the distraction. I gave Annabelle several kisses while she sat in her highchair and said goodbye. Pulling out the subdivision I started to pray. The further I drove, my stomach began to sink. I just knew today would bring me news. By the time I sleep tonight, I will be upset to not have answers, or upset to have a diagnosis I didn't want. There were so many unknowns and it made me literally sick. I crossed the funky railroad track and my bluetooth cut in and interrupted Elliot in the Morning. The screen read: GI Specialist. The time was 7:35am

Dr. V: Good Morning Ashley. Are you sitting down, busy, or have time to talk?
Me: Yes, yes now is fine! Good morning to you.
Dr. V: You probably want to grab a pen and paper, I have a couple things to tell you.

I was speechless, I knew by the start of this conversation, it wasn't going to be one that I could have while driving down the road and I found the nearest turn off to park. Grabbed a folded piece of paper and knocked everything out my glove compartment to locate a pen.

Me: Go ahead, Im listening.
Dr. V: She definitely has EE, I am so sorry.

He explained to me how they measure and what numbers mean on the biopsy. He explained again what he was seeing, rings, furrows, scarring etc.

Dr. V: We want to see a reading of zero. 5 is a positive and 15 is a definite confirmation we have a problem. At the lower end of Annabelle's esophagus, she was showing numbers in the upper 40s. The middle was above 25 and the upper was over 15. Here's how we treat this, we remove most the top allergens and switch to an elemental formula.
Me: But, we're already doing that. Those top 8 trigger foods aren't even in her diet! She's already on formula and has been.
Dr. V: I know, I am equally baffled. I am going to call Dr. George as soon as I get off the phone with you and we will discuss a game plan. Annabelle also has a great deal of gastritis in her tummy that was visibly irritated, once this disease is under control and the gastritis is healed, she will, for the first time, feel good. She won't be in any pain. You've done well Ashley, you have a diagnosis although it isn't what any of us wanted to hear. But we know what we need to do to help her. We will get there, it will be a long road but your baby will be happy and pain free very soon.

I thanked him very much, asked a couple random questions including the terrible coughing, he said that most often kids with this disease have asthma, and he will mention it to Dr. George. Once I hung up I called AK right away. No answer. I called Kelly. No answer. I called Kristy - beneath a whisper that tells me she was laying in the bed with her sweet baby's, she finagles her way out of her bedroom to talk to me. I explained to her what the doctor just said. I was very matter-of-fact about it all. I think I was in shock. I didn't have a studder in my voice and just read off the facts. I was almost to work and pulled in the parking lot when it occurred to me, "My baby may never have a birthday cake" "My baby will have this disease and will NEVER be normal for the rest of her life, she will always be fighting to stay in remission. She may never eat food again!" At that time I broke down.. only half way. I was sitting in my car in the parking lot and couldn't look like a mess walking inside. I couldn't allow myself to get upset yet. Then AK called back, I explained to him the results as he was walking Mady inside the school. He was pretty quiet, I don't think he really thought she would have the disease so the news seemed like a surprise  Our conversation was less than 30 seconds. Which was helpful because again, I needed to keep myself pulled together!

As the day went on I moved about in a trance. I didn't rush to update people, I did respond to those that texted me. I kept reassuring myself constantly that everything is going to be alright. Annabelle is strong and no matter what, she will be feeling better and for that I will be grateful. Food or not. I had a meeting at 1p and did my best to concentrate, finally I told him "can we reschedule, I am worthless today, I think we covered enough information already. Let me work on this and get back to you next Thursday?" I scheduled us for the following week and he left. Just then the allergist called me back and asked that I come in that afternoon at 4:30pm to discuss the diagnosis, our game plan, what this all means, get started on meds etc.

AK came to the appt. but had to leave before the doctor even came in to see us bc he needed to pickup Mady. I spent the next two and a half hours talking with Dr. George, collecting stacks of prescriptions and going over a game plan for a diagnosis, all the while trying to wrestle and distract a very cranky 18mo from staying out of trouble. To be honest, most our conversations didn't sit well with me. She seemed to have an extremely lax approach to treating this disease, she even offered the option of doing nothing. If you don't treat and bring the disease into remission you will destroy your esophagus, potentially never be able to eat food, endure painful esophageal dilatations breaking the rings, etc etc. I couldn't believe she even offered that approach which then led me to finish the rest of our conversations. We agreed the most realistic steps are to remove all foods from her diet, ensure she is getting 34oz of formula each day and maintaining her weight. We have two weeks to have her diet in place and the meds doing their job well. After that the clock starts for another scope and biopsy in 8 weeks. So 10 weeks total, we get to do this hell week all over again.


Friday, March 29th
That night Annabelle was up from 2-4:30a coughing and choking. I was less than a minute from taking her to the ER. It looked so similar to an asthma attack but different, it also looked like croup but sounded too raspy/wheezy. It was bizarre. I called Dr. George the next morning to discuss two things: Pulmocort prescription costs $435, we need another option. And the coughing, I need help. She listened to her over the phone as we were talking and said that if she starts again that she needs to go to the ER. In the meantime she would work on the prescription. She did call back, and that WAS the generic and it WAS with my insurance, for a price of $435! Good god, Im going to need help.

I decided the kid had been inside so much this week. It's Good Friday, let's go see the Easter Bunny. All was going well until we were standing in line and Belle started coughing again. We quickly took our picture and I left. Drove straight to Chippenham ER where we hung out for the rest of the day. She had Tracheitis from being intibated Monday during the procedure. They gave her a couple meds and she took a nap on my chest. Mady was an ANGEL for being stuck sitting on a hospital bed for an entire day. I was very proud of her, she's been a champ this entire time. She tells people "My baby sister has boo-boo's in her tummy. She can't eat". lol



Saturday, March 30th
I wanted to go to Short Pump to try to begin the kids easter shopping. I haven't bought the first thing and wanted to at least get their easter shoes, a bathing suit for their basket etc. We left the house so late that we only had time to lap the mall unsuccessfully and then run to Whole Foods to pickup an insanely priced chicken salad to take to Shawn & Amanda's Easter Egg Hunt. This was our first event since going off all foods. In many ways it broke my heart, BUT Annabelle did end up doing great! I just kept pushing the formula on her and she seemed to stay satisfied. We hung out until everyone was on the verge of meltdowns. Got home and got both girls in bed, Annabelle's neb treatment and then I ran out. I went to Southpark Mall to find the kids some shoes.. side note: we have GOT to move from this ghetto, ridiculous place. Im over it. Then I made my way to TRU and spent entirely too much trying to fill an easter basket with no candy or chocolate! I finished the night at Target getting the loose ends and buying every sippy cup they sold for the little girl. Mady made out pretty well too. It was nice to get out, but I was exhausted. I assembled the kiddos baskets, made sure everything was placed just perfectly and went to bed.


Sunday, March 31st             Happy Easter
Of all days for the kids to sleep in, they would on Easter Sunday when we need to be at church! AK jumped in the shower and I went upstairs to get the girls. We brought them down and destroyed the baskets, I really expected more excitement, but without chocolate and only an outfit and sippy cups, you can't get too much excitement. While AK dressed them, I showered and we moved quickly into our routines of getting our family of 4 out the door without running 30m behind. We actually made great timing and beat mom and Mike to church. I stepped out the van and realized I was incredibly overdressed. What kind of church is this?! Belle went straight to Sunday School and Mady wanted to go to church with us. I was hesitant but she insisted. We stopped first for coffee and warmed banana bread with butter, mmm. I like that the church did that. It doesn't cost anything really and I loved having a coffee for the service!! The service started with an exerpt from the guy on Duck Dynasty, I really enjoyed it but the rest of the service was odd. It was like being at a rock concert with a cross on the stage. The pastor wore jeans. I don't know, I think I really looked forward to being able to sit in church and being in touch with Jesus, there were a lot of things I needed to say to him, pray with him, thank him for and beg for help. I needed to feel him and his spirit and it was hard to get there with banging drums and four electric guitars and the singer jumping up and down as if she was at an ACDC concert! Odd. When the service was over the doors opened. It was POURING! I hurried to get Annabelle from Sunday school, I missed her, and we waited for AK to pull up with the van. Moms dinner was actually very nice, we met Mike's parents and they were so sweet. Annabelle napped while we all ate and Mady sat in the highchair :) It was a great Sunday.


Afterwards we headed to Prince George. There was a little harder because again, another function, more food, and my baby can't eat. We tried to hang out outside a lot but it was so chilly. Fortunately the time passed quickly, the easter egg hunts were adorable watching the kids run around and the big kid hunt was fun as always. I got closest Ive ever gotten to Chris, I got 52 and he got 58. I swear he cheats somehow, I don't know what he does but one year I will beat him.







Whew, I told you it's been an adventure!! It was a whirlwind of a week. I have spells where I can't hold back the tears from dripping off my chin. I am heartbroken that my girl will never be 'normal' whatever the hell that's supossed to mean. She will never be able to eat in a restaurant, ever. Our best hope is for remission, this disease will never go away! Mady is the biggest trooper I have ever seen. She's as sweet, tender, compassionate as ever. I love those qualities about her. She is the perfect big sister, hands down. Annabelle will be just fine, I know she will but she has a long road ahead of her. I promise I will be there every single step of the way. I will always fight for her and the answers and help she deserves.




My mission right now: Medicaid as a secondary insurance. We make too much money to qualify but I found a waiver that excludes the household income and only pertains to the income of the applicant, Annabelle, and she doens't make any money. So now I can just pray she can get approved. Im working my butt off for that.

I need to get organized big time. I am already loosing track of the insane amount of information that just stays in my head, eventually things are going to start get deleted in order to hold what I put in! I bought a couple things to begin a binder to keep everything organized the way it should be, so hopefully that works out for me.

Resources saving my sanity and draining my phone's battery:

You never think it's going to be your kids that get sick. I read stories, blogs, watched videos and the research of kids with EoE and never in my wildest dreams did I think she would be that 1 of 10,000 kids that would have it. Here I am, I now have a kid with a disability. Never, in a million years would have guessed it. I didn't ask for this, Annabelle didn't deserve it but it's the cards we were dealt. The way we get thru this journey will make all the difference and we will, with flying colors, soaring high we will get thru this!


The best things in life are about so much more than just food.