Thursday, May 30, 2013

Belle's Update and Ashley's Ranting

Day 6 and Day 7 have been tough on Annabelle, she can't seem to kick this cough that is going on. It's not getting worse anymore but it's also not improving. We are still continuing the nebulizer treatments and hope that they will start to provide her some relief. The cough is pretty persistent when she is awake, though fortunately it is NOT keeping her up at night so we all have a bit more patience than we otherwise would.

I have spent the last several days on the phone fighting with pharmacies, doctors offices and my insurance company. Suddenly, two prescriptions at CVS and our PPI at the Compounding Pharmacy; all require a pre-authorization by a physician to the insurance company to approve the REFILL. This has never been an issue before and now I cannot get my hands on her prescriptions until all these phone calls and thumbs up take place. I take that back.. I CAN pickup the prescription, for the lovely price of $487 w/insurance.. that's only one.. and at CVS, I don't want to know what they would all be together, let alone how much the compounded script is.

Annabelle needs these meds though, they're the top three most important meds on her list.
  • Pulmicort, liquid prednisone that is used to coat her esophagus to help stop the inflammation.
  • Periactin, an allergy medication that we use for two reasons. 1) Helps calm the seasonal allergy flares. 2) Boosts her appetite so we can make sure she is taking in enough formula each day to maintain her weight.
  • Omeprazole, PPI used to treat GERD / reflux. When the reflux isn't controlled, it can easily irritate the EoE in the bottom area of the esophagus and not allow things to heal.
Without these particular meds, Annabelle is uncomfortable and the EoE will likely flare again, very easily and very quickly. I've been battling these phone calls to have this taken care of since May 14th.. it's been over two weeks and I am very close to just paying out of pocket for all the meds so Annabelle will feel better. We've run out and time is ticking! What happens though, to people that truly cannot afford to spend $1,500 on three prescriptions?! How do you look at your child and tell them that you cannot at LEAST give them the meds to make them feel SLIGHTLY better.. they're already miserable with no end in sight to this ordeal, but to be told we cannot afford the med that at least helps?! God what is this world coming to.

AK and I are very responsible with our money. Extremely responsible. We had plans to move from our current home and find a home that better fit our family. We understood our finances well and were saving to make this transition.. then life happened. And life didn't just happen and throw us curve balls. Insurance companies and hospital bills began serving every single bill with big numbers and comma's! Within a year of our sweet Annabelle being born, we had more medical bills than you can ever imagine!! When Annabelle was placed on Elecare formula at 3 weeks old, and the doctor informed us that this particular formula is not purchased in stores, it has to be delivered by a medical supplier.. we knew we were in trouble.


This is one months worth of formula. $3,192


The price you pay to be sick is outrageous. As if being sick was something people asked for.. they don't want to feel this way and the LAST thing they deserve is to drown in debt because of it! It's happening though.

Thank God, and all the heavens above that AK and I have good jobs - not above and beyond jobs, but enough to keep the lights on and food on the table for our children. We work very hard for what we can provide and we work even harder to ensure our children are healthy.. but it's impossible to stay ahead when medical expenses are beyond out of control! So many people CANNOT handle this. Many, many children require their parents to stay home. And many, if not most days, I feel guilty for having to take my baby to a sitter when I know she is clearly in pain, not feeling well or just needing extra time at home with Lambie and momma - it kills me that I cannot be there for her. But I cannot-not work. I work to pay doctor bills, I work to carry insurance and I have to be 100% focused and present at my job to continue to do well. I have no choice. I am blessed with a job and I will continue to push my 40hrs/wk, but everyone is not so fortunate and I just cannot imagine what that is like. My heart pours for those in their situation :(

Medical Bills Cause 62% of Backruptcies. Did you know that? I used to not understand how people could go bankrupt.. are they that irresponsible? are they that negligent? where are their priorities? why don't they just work?
And then I found myself with an unexpected flood of medical bills and with my head spinning and eye-balls crossing, I said outloud "How do people afford this? We're going to drown!" And that(!).. Is exactly how it happens. Staring at a screaming baby that needs a prescription, and you spend $1,500 to provide them with the relief they deserve... that is EXACTLY what happens.
"Most medical debtors were well educated, owned homes, and had middle-class occupations. Three quarters had health insurance."


I am no longer surprised. I am not even shocked really. I didn't know it was possible to rob someone of $3,200/mo in formula that your baby needs to survive. This stuff isn't made of gold! They just know we have a child with special needs and therefore we WILL pay for it.

Wow Ashley, rant over. I'll step off my soapbox.. I have phone calls to make and insurance companies to bless out for my kiddo that's coughing up a lung... or esophagus.

I also need a glass of wine. . . . . that's ALWAYS in the budget, so don't judge ;)

Tuesday, May 28, 2013

And we take the Good with the Bad ..

I woke up this morning in such a daze that I blinked at my ceiling wandering if I actually slept last night. When I sat up I felt nauseous and looked down at my shaking hand. It then occurred to me, yes I did sleep last night and my last dream was receiving today’s test results and hearing over the phone something/anything I didn’t want to hear. This is only round two of scope’s and already I hate the waiting process. Fortunately we had the distraction of the weekend and Memorial Day to keep our minds off the wait. But nothing about today would be easy, because I will stare at my phone every second waiting for that 757 area code to appear with the much anticipated news.
I joined a group of co-workers for lunch and then headed back to the office. I don’t think I’ve ever been so productive at my job. I was knocking things out left and right, making changes and finding updates everywhere. Finally at 12:50p I couldn’t take it any longer, I called CHKD Gastroenterology. The kind nurse informed me they were out to lunch. I called back at 1:15p and the next nurse took my information to give to Dr. Konikoff. I stared at my phone for literally 40m expecting it to ring and it didn’t.. at 4:40 I called back. The LAST thing that I wanted to happen was for the office to close and I have to wait until tomorrow to hear anything. I mostly just wanted to know whether or not the results were even in. If a nurse could tell me that they were not back, than I would be able to relax a bit.
4:50pm my phone finally rang and should have practically been singing angels echoing from my phone’s speaker, as excited as I was! Dr. Konikoff genuinely said “Hi Ashley, how are you today?” I wanted to respond, “ON FREAKING PINS AND NEEDLES BUDDY! WHAT DO YOU THINK?!” However, I was cordial and chatted for a few about how Annabelle was current doing before we went on to the test results.
The results came with some good and some bad. Some discouragement and some encouragement.
The Good: The Eosinophil count in her esophagus is doing tremendously better. The counts in the top of her esophagus were practically cleared; counts in the bottom are still present and still too high to be considered in remission but they were definitely lower. The Encouragement: The treatment we have been doing for the last two months is working. The no-food, 14meds x day, coughing/fussing/crying has all been worth it to help her esophagus heal. The Discouragement: This tells us that since it is not the EoE continuing to flare, the reason she is so sick and not feeling well is very likely a result from all the medications making her feel this way. But because the meds and treatment ARE indeed working, we cannot take the chance to make any changes to the meds because the alternative is too dangerous.
The Bad: Eosinophils were also found in her intestines and colon. The number wasn’t extremely high but they were elevated enough to cause concern. Dr. Konikoff explained that the low numbers are very likely a reflection from the treatment we have been doing the past two months and therefore probably look really good. Considering we didn’t do the lower Endo last time, we don’t know what that count originally started at so it’s hard to gauge how much progress has been made. It is very likely that this area was also highly flared in March and the treatment has brought it into the promising resonable level that it is now. The Encouragement: We now have an explanation as to what has been going on at the lower end of the Gastrointestinal Tract. The condition everything looks on the inside and the current Eos counts, we’ve decided we’re not going to pursue any additional treatment. The Discouragement: This nasty disease isn’t only in her esophagus. She could now be battling it in other areas. Tests, procedures, scopes will likely always been twice as invasive, twice as long and 5x harder to prep for. Maintaining her weight, nutrients and thriving will be harder but at least we understand what is going on, and we will have a bit more patience for her weight moving forward.

SO! One of my biggest concerns and questions still stand. Can we try to introduce a food?
Answer: No. Not yet.. but we can get started on the process.
We are still in the process of moving Annabelle’s records over to CHKD and getting setup to meet with the allergist that Dr. Konikoff recommends. He did warn me that it may take a while to be seen with her, but the good part about that is hopefully we can see him at the same time while we are down there.. and truly there is no rush because we can’t begin a food until she’s in remission. Our best guess will be in about two months. (which is MUCH better than the September/October date we have been expecting)
Finding a food will be as simplistic as finding a needle in a haystack. Annabelle has to pass three separate tests to deem a food “safe enough” to trial: Skin Test, Blood Test & Patch Test, all performed at CHKD. If she can pass all three, we will introduce that food into her diet and watch her extremely close – documenting every single thing. If she begins to show signs of a flare or reaction we will stop and treat the flare with the boost of steroids and begin everything we’ve been thru the last two months to bring it under control. If she seems to be doing well, 8 weeks later we will re-scope. If her Eosinophil count has spiked or is elevated, we consider this a failed trail and the food she was eating a “Trigger Food”. It gets removed from her diet, again begin the steroid treatment and then move on to try to find another food. Meanwhile she will be back on formula only – and I can say for certain already, she will NOT be very happy. On the brighter side: If everything works out well and her Eos are not elevated, we consider this a “Safe Food”, she keeps it in her diet and then we move on to try another food.. repeating the process.
Our fingers are crossed that we find a safe food right off the bat, for sweet Annabelle’s sake. I don’t want to ever have to take another food away from her again. I trust the allergist we will be working with. She only works with other EoE children and I believe she will help guide us to make the best informed decision when it comes time to begin trials.
In the meantime, we’re waiting to hear from the hospital for scheduling that appointment. We are also keeping a very close eye on Annabelle and her current coughing issue. The last time we did this procedure, on Day 4 she ended up in the hospital with Tracheitis. She was fine for the first couple days and then on Day 3, while we were at an appt. she began this choking/coughing round of fits in front of the doctor.. she seemed puzzled and prescribed us an additional steroid to be used with her line-up of nebulizer treatments. That night Annabelle coughed and choked the entire night, I called first thing the next morning and the doctor could hear her over the phone choking, she became nervous and advised me to continue repeating the treatments and if we don’t see relief in the very near future, take her to the ER. That day I took the girls out for some fresh air and while driving down the road, Annabelle again began coughing and choking so bad that she could hardly breathe.. she was gasping and wheezing so heavily she couldn’t even cry any longer.. she just stared at me with wide open eyes. I ended up in the hospital with two girls for the entire day. They pumped her with plenty steroids.. her oxygen levels were so low they kept an eye on her for a while and we finally went home. What we learned that evening is that sometimes children have these type of reactions after being intubated for a procedure.. things become irritated or inflamed.
So here we are now, Day 5 since the procedure and she is coughing her little head off. She woke up this morning coughing pretty heavily. We began nebulizer treatments and hopefully will see some positive change very soon and she gets better. So far, the cough is only getting deeper and progressing faster into a bark/choke. It’s almost like a textbook watching her progress as she did the last time. Im holding out though before taking her somewhere. When Dr. Konikoff and I discussed this, he understood what I was explaining and welcomed her to come back for him to see her but he also knows that this does NOT warrant a 2hr drive for just a cough. He wished he could offer more help but he cannot prescribe meds over the phone without actually seeing her. The best advice he could give would be to have her seen as soon as it turns any worse from moderate coughing. . . . Im still trying to hold out. Is it sad I look at my schedule and pray, “Annabelle hunny, I have off work Friday. Do you think you can wait until then?” lol. Story of my life lately.



The girls had a great Memorial Day otherwise. We kept everyone pretty busy and entertained this weekend.. that may very likely be my fault, begging for distractions to waste the time. We tried to spend a lot of time outside and doing things that both girls enjoy. Mady has been such an amazing big sister and proving how resonsible and helpful she is lately so I promised her a trip to Build-A-Bear if she continues the good work for the next couple weeks. I was so touched by her sincerity when we came home from the hospital last week with Annabelle, and watching Mady's concern for her baby sister that I knew it was time to make that Build-A-Bear trip soon. Annabelle also loves stuffed animals (although NOTHING compares to Lambie) so she also made one for being such a brave little girl. It was a nice day enjoying the beautiful weather outside and became the perfect distraction that we all needed.

Friday, May 24, 2013

Upper Endoscopy, Round 2. Colonoscopy, Round 1 - Ding Ding Ding!

2:34 a.m.

That was the time the Poop-A-Thon began. I crawled in bed a little after 11pm and fell asleep shortly after 11:30p. I haven't slept in the same room with Annabelle since she was a newborn, and even then I hated it because I listen and hear everything, with each grunt or moan, I wake up. She was moaning and whimpering a lot in her sleep and I just knew from the second I laid down; it was going to be a long night ahead.

When she finally started fussing, I checked my phone to see the time and I got up. When I picked her up I noticed she was soaked.. with poop.. head to toe. She was shivering and I needed to get her changed, but I was in someone else's house with two very precious babies sleeping right down the hall, I couldn't just give her a bath like I normally would at home. I resorted to the baby-wipe-scrub-down and changed her into another set of jammies. I pulled all the blankets from the pack-n-play and explained to Annabelle that she was sleeping with me now. THIS was fun, she also has never slept in the same bed with us, to date = EVER. She wasn't feeling well though and was very fussy and clingy. Finally after a couple minutes she laid her head down on me.. a minute or so later she began vomiting. After cleaning vomit and changing myself, she pooped thru her diaper and jammies. And this is exactly how our night went.

Annabelle doesn't speak much. She will parrot a couple things back to you if you ask her to say something.. and she will come over to you chanting 'UP! UP!' if she wants you to pick her up, but that's about all she does. Beside the word UP and Uh-Oh, she doesn't say anything on her own. Laying in the bed with a whimpering little girl.. begging for food and I couldn't feed her.. crying every time I needed to change her diaper and wiping the tears from her face every time she would vomit.. she laid beside me, curled up as the little spoon and held my finger. I then heard her mudder the words "Wuh-Woo", her two sounds to say "I love you." My heart literally skipped a beat and it literally took my breath away. I kissed her sweet curly hair on the top of her head and held her tight. Around 6am is when I laid in bed and believed she would be able to get a rest of this last episode of pooping and I told myself  "Ashley, you need to sleep this time". And I did, I closed my eyes with her in my arms and we fell asleep for about an hour together.. I would open my eyes here and there to check to see if she was sleeping but then fall right back asleep. I needed that hour, I was so exhausted.

We went downstairs and I made Annabelle another cup. She wouldn't drink anything the entire night and I was getting worried she would dehydrate if she didn't have something soon.. plus, she had to stop all fluids at 10am. It didn't go well. The rest of the morning was wonderful, all the girls had breakfast together (beside Belle of course) and we tried to keep the distractions coming. The hours from 9-11am were beyond horrible.. for so many reasons that I will spare you, it was terrible for Annabelle and I. She screamed her little head off for hours between feeling sick, tummy hurting, being hungry but couldn't eat/drink, and I couldn't carry her 24/7 because we were getting ready to leave and I was trying to pack the car, in the pouring rain. Finally I got everything loaded and we headed out.


Once we got in the car, she was much better and I prayed it would stay that way and the next several hours would fly by.

I made it to the hospital in the pouring rain and met AK in the parking garage. We couldn't have had better timing. We got all our things together and Annabelle was very happy to see her daddy.





Once inside, I found my trusty Starbucks again. I needed something anything to put on my stomach.. preferably caffeine, because it would look quite terrible if I were bored enough to fall asleep during my child's surgery! I was just SO tired and it was hitting me like a brick wall. After I secured my crack-in-a-cup, we checked in. Received our badge that read our Name, 3rd Floor - Surgery, Annabelle Bishop, Date and our Driver's License Picture. I swear, you won't be getting anywhere around this hospital without permission! 

Pre-op Registration wasn't too bad.. beside the b!tch registration/check-in lady that scolded me for bringing a coffee cup into the waiting room, even though NOONE was in there - she demanded that I walk outside immediately and every nurse around her was rolling their eyes. I guess we all work with one of them everywhere, huh? The real nurse was wonderful and got all her vitals with lots of distractions. Annabelle doesn't like anything about a medical office, NOTHING, she even hates the ID Bracelet and flips out, so just getting a temp is excruciating for this drama-queen. Once all the questions were answered and I exhaled after answering the question "Is Annabelle allergic to anything?", we got to play for a couple minutes before going back to the next area of Pre-Op.


In our next room we were instructed to change Annabelle out of everything and into the way-too-long-pants they provided and a gown. Remove earrings.. you know the drill. We then waited for the nurse to come in and re-confirm all our information and walk us thru what will happen in the OR. We got to pick a flavor of gas/anesthesia, AK chose Cotton Candy and I think it was a great choice. Something about being in a confined medical room, sends Annabelle's anxiety thru the roof.. it's heartbreaking to see her reaction when she knows something is not in her favor and I can't do anything about it.. in fact, I am the one that brought her here and asked for this, so I feel guilty the entire time - with every tear.




Water is our new favorite thing. She loves running water.. washing her hands.. playing with the soap.. mostly, just feeling the water dripping. She loves it. Anytime we are in a doctors office, I find the sink and we spend 99% of our time running up their water bill. Hey, whatever works - you do watcha gotta do.


After the nurse finished discussing everything with us, she asked if we wanted to wait for the doctor in our room or go back to a playroom to wait. We needed to get out of that room for everyone's sanity, especially Annabelle's so we agreed to take the walk to the pre-op playroom (which was a really good choice because we spent an hour in there waiting..) Finally I saw Dr. Konikoff come to speak to us with an anesthesiologist. We discussed her current condition, what we would be doing today and any concerns. Of course I thanked him and he winked to Annabelle that he would see her soon. We spoke to the anesthesiologist briefly following and then waited for the nurses to bring us back.


Saying goodbye this time was a bit more bittersweet than the first time we went thru this procedure. In many ways it was easier, probably bc it wasn't her first time with anesthesia.. and most likely because the nurses were so much more comfortable to work with. This was a place that deals with only children all day and they knew just what AK and I needed to feel comfortable and they held such comforting open arms to Annabelle so she would also feel safe. I gave her lots of hugs and could feel my arm shaking and turning weak when AK asked me to smile for a picture. I am glad he took so many this day - it makes the memories and the process much more enjoyable than the bad thoughts I tend to hold onto longer than the smiles that actually did take place!
We then went to the Surgery Waiting area. I hated this room. I signed in and looked at the chairs and then turned around to AK and said, "Nope. Im not sitting there for over an hour.. let's go eat" I noted on the sign-in that I would be going to the cafe and we headed towards the elevator. We didn't have a clue where we were going so I just pushed " 1 " and when the doors opened it was as if a flood of fried chicken just poured down the hall.. or maybe I was just REALLY hungry! I followed my nose around the corner to the right and sniffed all the way to the greasy, hot and fresh onion rings!! :) They were everything I wanted them to be. While we were eating, Andi called and we talked for a bit. Again - thank you distractions! My phone was dying though and I was simultaneously having a panic attack that it would die as the hospital called from upstairs for something. We got off the phone and made our way back upstairs to check on Annabelle.


Her number was 4226. I loved this monitor. I stalked it like a hawk but I did love it. I enjoyed watching how she was doing.. and knowing that even though the doctor was taking longer than he said he would, that she was still in the OR and for some reason that made me feel better than her moving to the PACU and I wasn't getting an update. I was patient. I was silent. I prayed. I gossip'd with AK. We contemplated what the doctor would say. and we waited.. God the wait is nerve-wracking! Finally I saw Dr. Konikoff walk thru the doors to come speak with us.

He explained that Annabelle, from just a visual look, appears to be making a lot of improvement. Her esophagus looked much better than it did before which tells us that on the surface, the ridiculous meds and no foods/Elemental Diet is actually doing what it should. Just hearing those words gives me the energy and motivation that all this hell is actually paying off for my sweet child. I was relieved.. but then he stopped me. Dr. Konikoff reeled me back in and spoke very medically and told us that often times, visually, this disease may take different shapes and forms.. where it appears she is doing better, the truth will be in the biospy results and that very well may tell a completely different story so I CANNOT get exited too soon. I agreed and I remained focused and open-minded.  I asked if her biopsy results show that the EoE IS improving and her Eosinophil count is low/0, could that open the possibility for us to begin introducing foods? He immediately said no. Then he saw the reaction on my face and he looked down and thought for a bit... a LONG bit and looked back up and asked, "Do you think she would actually eat?". YES! I do! I do believe that if I were to give her food, she would eat! He has a LOT of hesitation when he agreed, but then he heard me out. If I could give her food, no matter what it is.. even if it's only one thing, I believe her spirits/quality of life would improve so much that she will take feeds easier - she will eat more - she will gain weight!!! I truly believe this will be the ticket to avoiding a feeding tube, I do. And I begged for that opportunity to do so and avoid that route. He agreed and we spoke quickly about the allergist I am using. I explained that I have nothing against our current allergist, however her position on this disease does not sit well with me at all times and I would feel more comfortable using an allergist that he works closely with and will stay in communication with, preferably someone more knowledgeable about Eosinophilic Esophagitis. He recommended a woman that works at CHKD and has a big interest in EoE - just the sound of the words run giddy chills up my spine. I immediately agreed that this would likely be the best fit for Annabelle and we signed over to have all her care moved from Richmond to Norfolk. Shaking Dr. Konikoff's hand, I felt my body exhale. I truly believe we are in the best hands and best care for Annabelle and nothing in this world gives me more comfort in that. Granted this is easily a 2hr trip every time we need a visit, but it will be worth every mile!!! I know it will!!


Once the doctor stepped away, the nurse soon after asked if we would like to come back to the PACU to see Annabelle. We followed her into the room and around curtain #6 and met another sweet nurse standing up holding her in her arms with a blanket. She told us that she was just starting to wake up and her and I wiggled our way around one another to pass off Annabelle into my arms. I took a seat into the recliner and held my sweet baby so tight. She would cry pretty hard at times, but mostly she was so tired that she just whimpered between drifting back off. I asked the nurse to bring me a cup of something for her to drink and she brought me a sippy cup of pedialyte. Annabelle nearly chugged the first one and cried when it was empty - we refilled it and then did another round of stat's. Afterwards we began detaching all the cords and wires from her; blood pressure cuff, heart monitors, tape from oxygen, IVs, pulse thingie.. the works. Finally I asked if we could go home and she agreed that Annabelle was looking ok for the ride. I dressed her into the most comfortable outfit I could find to pack and we refilled the sippy cup one last time. Thanked everyone tremendously and made our way for the door. It was so nice walking across that parking lot with our little girl. We packed the car, strapped Annabelle in tightly with me in the car and I followed AK home. We took 460 home and drove thru some of the worst storms I've ever seen. Our timing was amazing however and we got home without ever hitting traffic.

Mady was out with Aunty-Dandi, shopping, eating dinner, buying pools and all sorts of fun stuff. Annabelle was so tired once we got home that she could hardly stand up without falling.. I made her a cup of formula and we put her to bed. Once Mady was also in bed, AK and I made ourselves dinner and sat back. That lasted for about 3 minutes and I put myself in bed. I was asleep by 8:45pm

Annabelle made it thru the night very easily without waking up. She was very clingy the next morning and has been extremely attached to lambie lately too. Kelly said she slept most the ENTIRE day Friday and ate like a champ. I was glad to see it and happy to know my baby was recovering well. She was still very clingy and fussy at times, but all things considered she was doing wonderful :) Now onto crossing our fingers and saying lots and lots of prayers for good biopsy results next week! Please Lord give us good answers for this little girl, she really deserves a break, I want to be able to finally look into her sweet eyes and tell her "Im going to make you better sweetheart, I know what to do now" That is my prayer.

Wednesday, May 22, 2013

Time to pack our bags and head East


Our day began this morning with a visit from a great friend who I got to talk, share laughs over coffee and zuchinni bread and gossip with. It was a welcomed distraction and Annabelle was moderately entertained at home. I began giving her Miralax & water at 7a.. she drank a bit of it but then kept asking for another cup.. she wanted formula because she was hungry. I decided to break out the apple juice that I sent AK to the store the night before, to pickup. She cannot have anything outside of water or formula - and hasn't for two months, but I knew that I wasn't going to be able to get her to drink yucky water the entire day.. and definitely not enough to get enough miralax in her and also stay hydrated. The first couple rounds of apple juice didn't even do the trick ( I was shocked! She never gets juice! I thought she would welcome a different flavor of something in her cup.. but she wasn't buying it)... so I made the next cup EXTREMELY concentrated with Miralax and she drank a little. I waited stalked her all morning waiting for the Poop-Fest to begin and it didn't.. I didn't want to get on the road until I thought it was coming to an end but it just never started!

My friend took Belle and I to the car dearlership bc I need the oil changed / tires rotated and wanted to do so before hitting the road. We got home and I packed our bags and continued to sniff tiny-hiney's waiting for a fun surprise... nothing. UGH! Another friend texted me and asked to stop by before we hit the road, I welcomed the distraction and knew that it was probably good to wait this travel idea out a little longer. Because we ALL know that the moment we get in the car, she's going to start exploding all the way to the beach! My girlfriend and I talked for an hour and enjoyed each other's company and played with Annabelle.

Finally I loaded the car and we hit the road. Stopped at the gas station, even though I had 3/4tank (I don't know how to begin a roadtrip without topping it off). As I was merging from 295 onto 64 East, my stomach sank. I don't know why I do it to myself but I always calculate all my 'lasts' before something big. "This is the last time I'll be on 295 until after this procedure.. This is the last time I'll be doing xyz until I learn of the next biopsy results" It's like I am setting myself up for an anxiety attack and I just need to stop it. But the further I drove, the worse it got and I began to feel nauseas.

I looked in the back seat and saw my sweet Annabelle snoozing. She managed to wrap the blanket around her head and fall asleep. I felt like doing the same. We had been on the road for 25m and I never cut the radio on, it was silence. Maybe that is why my mind is wandering so terribly? I cut the radio on.. every country song made me want to jump off a cliff. I turn it to Classic Rock 96.5, "Hootie and the Blowfish - Take my hand" Lord Jesus, are you trying to break me today?! I was watching signs for the nearest exit because I needed to pull over, I was going to get sick. I haven't been carsick in years so I don't know what it was about, but I sure was NOT puking in my new car!! I picked up the phone, called Kristy and told her "Start talking. I don't care what you talk about but don't make it Annabelle.. tell me about the Destination Vacation Home you are setting up for me in Orlando, and tell me about your palm tree in your back yard!"

I didn't hang up the phone until I got on the bridge for the tunnel and knew I would loose signal. The power of distraction is a wonderful thing and I use it constantly! When we got out the tunnel, Annabelle began to wake up - but she was silent, just looking around and dozing on and off. Ginny and I touched base, I reminded her of the brake lights I was watching and how inviting VA Beach traffic is. :) We chatted for a bit and finally I made it to her house.

Her home is absolutely beautiful and so is her sweet family. The girls all had a great time playing together and I thoroughly enjoyed catching up. We went for a walk, played outside, played inside, took baths and poured glasses of wine. All in all it's been a great day.. but still no poop.





Tuesday, May 21, 2013

Preparing to leave for CHKD tomorrow

When I left CHKD, I spent the afternoon kinda in a haze. Grammy knew I was trying to enjoy the day, and I definitely did, but I was also trying to process over and over how my conversation with Dr. Konikoff went. I made up my mind on the drive down 295S, looking in my rear-view mirror at a silly little girl blowing bubbles, that I would give the new medication a good shot and try my hardest to push foods and work on more smiles all around in the home. I have 2-3 weeks and I think I can handle it!

Two days later I received a call from the Surgery Center at the hospital, ready to schedule Annabelle's surgery, just like I expected. She informed me that Dr. Konikoff himself called down the day before and asked that we get her in as soon as possible, which happens to be next Thursday. Wait, what? I thought I had a couple weeks to show off all our improvements and great strides, what do you mean I hard have 7 days?! He wants her scheduled Thursday afternoon but wants her near the hospital next Tuesday evening to check in so we are near during the prep-work for the Colonscopy in case anything goes south. The wonderful nurse put me in touch with the Ronald McDonald House for accommodations and we discussed my goals in the meantime and what would happen once we arrive next week. Everything moved very quickly from there, and I am now staring at a computer at 11pm the night before Annabelle and I head to Norfolk alone and I cannot make my mind stop racing to save my life.

I speak with someone from either Dr. Konikoff's office or the Surgery Center almost daily. They call to confirm another bit of information, discuss allergies to medications / prior experiences with surgery / etc etc. I am pretty sure at this point I shouldn't hear anything further and we are all set to go. I will call tomorrow morning at 10a to ask what time to report to the Surgery Center at the hospital, they currently have us scheduled for 2:00pm which will require we arrive at noon. The procedure itself will take about an hour, then a couple hours afterwards to make sure she is coming out of anesthesia safely and is doing well. I figure we will get on the road from Norfolk at perfect rush hour 5:00pm, with a very irritable baby that just went thru hell in the backseat alone with me for 3 hours. This is promising to be quite fun.

I decided to pass on the Ronald McDonald House and take a friend up on a generous offer to let us stay with her at her home with her two sweet little girls. I fear sitting in a hotel room / equivilant alone with just Annabelle and myself, and watching her beg me to eat all day while I am unable to keep her entertained... for two days. I am looking forward to catching up with Ginny and I think Annabelle have new friends and toys to play with and I have a girlfriend to also talk to, will be a welcomed distraction until it's time to head to the hospital. She lives very close to the hospital so it will be a benefit all around. 

What's racing thru my mind right now:
  • Anesthesia. That will never be something in the back of my mind, I dwell on it constantly. I don't know what it is about anesthesia but I cannot stomach the thought of my daughter being put to sleep but not waking up. Ive never had a bad experience with it, but something has also never sat right either. I hate it, I hate every single bit of it.. and this time it won't be 8min, it will be over an hour. 
  • Keeping Annabelle distracted. She's going to be starving and I cannot feed her for TWO DAYS. It's one thing not being able to feed your child food any longer, and it's heartbreaking but it's another not even being able to give her formula when you know her belly is growling. I hope we can keep her happy and smiling.. even during the long drive down there.
  • Oh crap! Yes, literally. My tomorrow will be full of changing more diapers than I can blink at. Im not concerned about my responsibility in this as much as I am worried about how it will make Annabelle feel. I don't want her tummy upset, or hiney raw (as it usually gets anytime she has these issues. She goes from a perfect hiney to open, bleeding sores in hours and I worry this will happen). Tomorrow may also promise to be a lot of baths for us too. I hope she can slow down and get comfortable enough to give us a break in the day to get to Va Beach without too many stops to change. I just have no idea how the day will work and I hope I can navigate around this un-fun part of the process and keep everyone from getting frazzled.
  • Madelynne. I try hard to spend lots of one on one time with her.. letting her stay up later, watching movies and cuddling together but also keeping her informed on whats going on around her and in our lives. She deserves to know that her sister is sick and when she asks questions, I will give her the honest truth. I told her that tomorrow I will be going out of town with Annabelle and she will be here with daddy by herself. She was upset because she also wants to go with me.. explaining that she cannot and needs to stay here was a little difficult. I told her that Annabelle has to go to the hospital and she distinctly remembers what happened last time this procedure was performed, and how scared and upset Annabelle was. I think she is nervous for her sister but I don't want Mady to have to carry that fear or burden. I hope this time with us away from home this week will move by very quickly for Mady too and all be over before we know it.
I need to pack our bags but I have no idea what to pack. Something comfortable of course. Lambie, duh. My new CURED T-Shirt that just arrived, absolutely. Jammies and probably 15 extra pair of clothes in case they get soiled over the next two days.. I just need to get started, but everything inside me is procrastinating because I don't want to leave. When I get in the car tomorrow with bags packed, just Annabelle and I cruising East sporting our sunglasses, I know that when I come home I would have just conquered a new level of 2-Day Hell and that in itself scares me, for both of us. Annabelle is so strong, she's brave, she's a trooper but she also has no idea what is in store for her - and that too makes me feel so guilty. Oiy. Wish us luck. Keep my sweet baby girl in your prayers and say a good word for her upstairs that we have a safe surgery Thursday afternoon and get good answers next week.

Sweet Dreams

Wednesday, May 15, 2013

Our First Visit to CHKD!

Yesterday was quite an adventure. AK was out of town and Annabelle's appointment was scheduled for 10a in Norfolk. My alarm went off at 5:45a but wasn't necessary, I had been up almost the entire night anyway, nervous about what the day would bring. I pulled myself together and everything for the girls, packed the car and then headed upstairs to get them dressed. Mady was so excited that I would be taking her to school that morning and even more excited that she would be able to go to Daycare before class (she loves going, and I feel guilty for sending her.. it's an odd combination.) By 6:50a I was on the road and heading east to kidnap Grammy for the adventure and find the beach!... err... hospital.

I've fought hard, VERY hard to secure this appointment. I have nothing against our current G.I. Specialist, I think he is wonderful and has the best Bedside Manner you could ask for small children. But Annabelle is not getting better. She is still very sick and I am not seeing the improvement I would expect from such a dramatic treatment plan. Maybe not dramatic in the grand scheme of things and in comparison to many EoE kids, but it's definitely the biggest change my family has ever had to make! As a recap; Last Monday I met with our GI and begged him to reconsider our treatment plan. I explained my concerns and he seemed to agree and would consult our Allergist that has prescribed the 12 meds she is on. The nurse called me the next day to inform me that our GI agrees and is sticking to the treatment plan;  no changes will be made. At the same time I hung up the phone, I tuned around and Annabelle was coughing her little head off and choking. I said to her, "I will find you a second opinion. I'll find the best doctor in the state!"

That's exactly what I did. I called every hospital until I found Dr. Konikoff at The Children's Hospital of The King's Daughter's in Norfolk, VA. The moment I read that he came from Cincinnati Children's Hospital (one of the top two hospitals specializing in this disease) and that he only focuses on Eosinophilic Esophagitis, GERD and IBD - I was sold. I keep calling him my Golden Ticket Doctor! When I called to schedule, the soonest he could see us was July 1st. I accepted and then called Annabelle's PCP and asked if they could pull any strings to get her in sooner. Our wonderful PCP called and spoke directly to Dr. Konikoff and he got me in 3 days later :) I felt quite victorious.
So here we are. I have faxed all her medical records over. I have three pages of notes and questions written down. Videos to explain her EoE flares, the car filled with gas and my SuperWoman underwear on! We were ready for the day!

Children's Hospital of The King's Daugther's

I cannot go on without stopping now to say, this organization has a really, really great thing going. Top to bottom, without a doubt, this is a wonderful facility that really knows it's patients and the families that are traveling to visit. From the moment you valet (for free!), to walking thru the door greeted by happy smiles and helpful faces, you just know it will "all be ok. You're in good hands here." I felt my shoulders relax and drop and the world of ease when stepping over that threshold.


 
The first nice lady asked where we are visiting today, I told her Gastroenterology, and she gave both myself and grammy a sticker to wear on our shirt that read "..CHKD...... 4th Floor" How helpful, that tells everyone that works there and see's me on the third floor, that Im lost and "HELP!" :) But that wasn't the case.. with so much help here, you couldn't get lost if you tried. After getting our sticker and letting a squirmy Annabelle out of my arms to RUN and play in all the fun stuff, she directed us towards both the restrooms and Starbucks. Smart, smart lady AND hospital - we needed both after being on the road for three hours! After we secured our Caramel Macchiatto's another lady directed us towards the elevated, hit " 4 " for us and wished us a happy visit. I felt like I was in Disney World! For a mom of a sick child that is constantly full of worry and fear, this WAS like the Happiest Place on Earth!! ..wait, that's the circus. You get my point!
On the 4th Floor we were immediately checked in and directed to the first door towards Gastroenterolgy. I exhaled, more toys! AND Mickey da-Mouse (as Mady would say) playing on TV. Not 2 minutes after sitting, we were taken to the back. Height, weight, vitals and back into our room to wait for the doctor. The moment I sat down, our doctor walked in. He didn't know it but I already knew more about him than he could imagine, I knew what he looked like and in my eyes he was glowing with sunrays beaming off him as if he were walking in as Jesus about to heal my daughter with a single glimpse.

Annabelle was playing, enjoying washing her hands a little too much, so Dr. Konikoff just pulled up a seat and asked me to start talking. Well that's easy! That's one thing that I know how to do REALLY well! And talking about my kid... you might as well grab an extra cup of coffee!


Grammy was amazing, incredible beyond belief and took care of Annabelle the entire time, leaving to go back to the playroom after a few minutes and gave me and the doctor time to have serious discussions about what is going on. I started from the beginning, when she was in the NICU, leading to where we are now. What I appreciated most from this doctor, is that he did not disagree at all with our current treatment plan, he supported the doctors we are working with and what they are doing. Then he offered a different / his perspective with how he would handle Annabelle's case.

  • The current treatment plan is great to treat EoE. We are doing everything right but in some very rare cases, that doesn't work. It may be the formula, although she vomits Neocate and refuses Splash. Or something else, not yet determined. OR maybe we are treating the EoE and the treatment is working perfectly fine and the EoE is actually getting better.. just on the surface, what we are seeing looks like EoE and perhaps it's something different. The only way to know if things are getting better is to take another look and get a newer Eosinophil Count to see if her numbers have come down. If they have come down from the upper 40s they were before: The treatment is actually on target and we need to investigate what is keeping her sick since it is not the EoE. If the numbers have not dropped dramatically: We have a problem and need to make major changes to her treatment plan.
  • Her bowels have been very inconsistent lately. As they have since she was born. I have chaulked that up to the variability of her diet for so long that I haven't kept much of an eye on it until very recently. At this point there is nothing variable in her diet, it's only formula and consistent meds. But some days she will go 5 days w/o a BM and then have loose stools 4x in one day and other weeks she is regular. She has traces of blood in her stool often and at this point, for no clear reason. Eosinophilic Disorders can be in several different places, we only know right now of the disease active in her Esophagus but have not checked further. Dr. Konikoff believes it's time to dig a little deeper (no pun intended) and make sure that we have all the diagnosis covered before we begin treatment, expecting stellar results. He wants to perform a Lower Endoscopy at the time of the Upper Endoscopy.
  • Feeding Tube. This has become a personal battle and war of mine. I do NOT, repeat do not want my daughter on a tube. I fear that the moment it goes in, it will never come back out. Dramatic of me, yes. But I also have this terrible mindset that if she is placed on a tube, that means I have failed in some way and didn't work hard enough with her to avoid that. I know it will be uncomfortable, painful, messy, life-altering, and just not pretty or an accessory I want my infant wearing. During this meeting however, I kept my mind open and didn't immediately cut the doctor off when he mumbled the words. We discussed the purpose, pro's and con's and in the end, I bought two more weeks :) Victory! He gave us a new med that can replace one we are already taking, but this one boosts her appetite and maybe she will eat thru those tough times when she isn't feeling well and get some more pounds on. She currently is not underweight.. but she is struggling to keep the number on the scale where it needs to be for an Elemental Diet (Formula fed ONLY).
..Dr. Konikoff sat down in that room for well over and hour talking to me.. He didn't rush anything that I had to say, he asked several questions and was extremely sensitive to the battle we are facing with this disease. He was supportive in every way and truly allowed me to lead where we wanted to go, by offering his medical direction and advice. Without a doubt, I feel like Annabelle is in the BEST hands at CHKD with Dr. Konikoff. There is no way I could have asked for a better day or experience than what we walked away with.
The hospital will be calling very soon to schedule Annabelle's Upper and Lower Endoscopy. I have two new prescriptions (that makes a total of 14 medications daily). And plenty labs that need to be completed for the procedure, including a trip to CVS for Miralax to prep for the Lower-Scope. Oh what fun this will be!! :)

Now. All that to say, at the very end of our conversation, he looked over and said "you look disappointed." It took me a second, and quite a bit of hesitation to admit, I kinda was. Deep down I thought we would be leaving Norfolk with a new game plan. Some miracle drug that I could put her on to solve all this. I even feared/prayed that I lost my Feeding Tube battle and it would have been put in and solve everything. The fact is, we were actually leaving with no changes to our current plan, except a couple added drugs that will not cure her.. just help a little here and there. I pray every night that THIS will be the last night she has to feel so yucky, be in pain, take all the drugs or be sick. I hate looking at my little girl and cannot help her, and to think "Next week she will be just as sick, if not worse". We didn't leave Norfolk yesterday with the promise of making her feel better right away, and I was really really praying we would. For Annabelle's sake.

I fully support the road we are on though. I agree 110% that the next step does need to be figuring out everything that is going on and finding something measurable to base our treatment plan off of. I look forward to the next Biopsy results to see what improvement (if any) we have made in the EoE in the last two months and I pray we find more explanation to why she isn't getting well. At this point, even bad news IS news and with that we know how to help her. Without knowing what is keeping her sick, we cannot help. I am grateful that Dr. Konikoff is willing to take the next responsible step to re-scope and I look forward to this experience with him leading her care at CHKD.

We finished our day at a great hole in the wall diner in Norfolk where Grammy and I split a huge seafood platter that held the best crab cakes Ive had in years. Annabelle feasted on Neocate Nutra but was full of smiles and giggles. Afterwards, somehow, no clue how it happened.. but we also sumbled upon the Williamsburg Outlets ;) And the girls racked up on plenty new summer clothes.




















For the procedure, I am not going to even think about it beyond "which hotel do I want to stay at in Norfolk?" because if I wrap my head around my baby + anesthesia again, I will fall apart.
Yesterday was a good day. It was a wonderful day and was finished with shopping at the outlets with grammy and Annabelle. We got home around 5:30p, Annabelle was unconscious at 6:15p and I was out at 8p!


Sunday, May 12, 2013

Mother's Day


6:04am and I hear a certain little girl over the monitor whimper 'dadada'. I nudge AK and like a robot he crawls out of bed, half asleep and throws a t-shirt over his head.. walks upstairs to greet the girls and reminding them the entire time, 'shhh.. Mommy's sleeping. Let's let her sleep in today!'

I needed the extra sleep. This week has been the week of hitting my wall both physically, mentally and worst of all, emotionally. I feel like I have suffered thru each phase of mourning these last 6 weeks since we've gotten Annabelle's diagnosis. It all just plain sucks. Point blank. It sucks. 

I laid in bed this morning and tried to fall back asleep several times, but I couldn't ignore the sweet giggles coming from the living room. I'm so tired and needed the sleep but I was missing all the fun! 7:25a I had to get up. 

After squeezing both my girls with morning breath kisses, I fixed my cup of coffee and sat down to enjoy The Smurfs with them. Mady was so proud to give me the pictures she made at school for me and I was equally grateful. I sat there in my messy living room with a coffee cup almost empty holding both girls in my lap. On my right I have a super smart 4yo who uses every effort to make daddy and I happy and watch us smile or laugh at her. 

And under my left arm is the bravest 19mo I've ever met. I look at this child and have so many questions, fears, worries and guilt its hard to even put into words; then in the next fast passing moment, she looks up with her big brown eyes & long eyelashes and smiles. She leans over and out of nowhere gives me a tight hug and wet kiss and jumps out of my lap to go play. As if she were telling me 'It's going to be alright mom! I've got this!' 

And that's where we are. Somewhere in the middle of Happily Ever After and a Highway to Hell. EoE is part of our lives every day. Some days eating is a full fight, some days were in public and Mady tells curious strangers' my baby sister can't eat bc she has boo-boo's in her tummy' and some days everything is running perfectly but I still lay in bed for hours and hours researching until my eyes bleed. 

It's Mother's Day and EoE doesn't damper our day in the least. But it does define how special of a role I get to live as these two beautiful girls momma. I get to celebrate this day bc of these two sweet girls and what an honor it is. I dont know much yet about what were dealing with but there is one thing that I sleep well knowing: Annabelle does not deserve this disease and my family has done nothing to ask for this nightmare BUT Annabelle does deserve me as her mommy and my family deserves every ounce of my effort to maintain normalcy, laughter and love that I will make sure is always thriving in this home.


Today I am so grateful for the perfect children that have taught me everything I need to know about life. I thank them for being able to celebrate and appreciate this day.

Thursday, May 9, 2013

Fear the mama of the hurt baby cub.

I never knew what kind of fight, determination and drive to get what I need, lived inside me until I see the pain in my child's eyes.

Annabelle isn't doing so hot. She isn't doing awful but she also isn't doing great. We have great days and we have crappy days. But mostly these come in waves of weeks. You see, when she is on liquid prednisone she is fine and we have great days. She is smiling (albeit crazy) but she is happy and eats great with no side effects. When she is off the prednisone she relapses, and fast. She returns to coughing, choking, wheezing, vomiting and overall miserable (I believe to be suffering from Roid-Rage). Each time we return to the doctors with the same issue, they add another medication on top of our current treatment. And were not getting any relief! Currently, we are in the phase of no prednisone and coughing, choking and wheezing. I took her to our GI Specialist two days ago and begged him for help and a change in her treatment plan. He agreed she was on entirely too many meds and said he would speak with the allergist and together they would determine a modified treatment plan.
Last night I get a call from his nurse: Keep all treatment plan the same, don't make any changes.

Me: What? That can't be right. He isn't remembering our discussion yesterday because he agreed she is on entirely too many meds!
Nurse: No. He agrees with Dr. George and the treatment and thinks that it will all work out.
Me: Work out? My child is a textbook with these meds. She will only get worse the longer she's off the prednisone. I guess I will just wait another couple days for her to get worse and well see you again in 3-5 when she's miserable.
Nurse: Well, Im sure she will be fine! Have a good night!

W.T.F. ?! UGHHH!!!!

I haven't been sleeping well lately. You know those nights when you lay in bed and cannot solve the puzzle spiraling around your brain? You just keep thinking of so many different ways to solve the issue and it just keeps manifesting into a long drawn out - still not solved - issue. You roll over frustrated and it's 4:30a. Toss and turn and fall asleep at 5:15am. Alarm clock goes off at 5:30am. :Exhale: Yea. Ive been having those days. I need to fix my baby. She's sick and she looks to momma to be able to help her and I can't. I don't mean to say that our doctors are WRONG but I do think that this warrants a second opinion. And after a couple sleepless nights that was the conclusion that I came to, to solve this pain in the ass issue. Getting a second opinion though? Not as easy as it seemed at 3:47 am on a Tuesday night.

VCU Doctor. Ive seen lots of news articles on her and she specializes in EoE. First available appt. June 15th. I took it.

Kluge Children's Hospital in Charlottesville. Old as dirt but specializes in EoE. They're waiting on the August calendar to get me on the books. I declined.

Inova Fairfax Hospital. Can't pronounce his first OR last name but he looks to know what he's talking about. Soonest availablity, sometime in July. Declined.

Pediatric Gastro Assoc. Another old doc but he came recommended from a fellow mom of EoE (actually two moms). I fear him bc both their kids were immediately placed on a feeding tube and we are avoiding that route. Soonest available appt. is June 10th and I accepted. If I drop off her medical records to the office, they may be able to get me in sooner.

Duke University Medical Center. They couldn't even talk to me without cringing at their August calendar. Nor did they have a specialist that focuses in Eosinophilic Disorders.

The King's Daughters Children's Hospital in Norfolk. I found a doctor that did his internship and began his career in pediatric gastroenterology at Cincinatti Hospital!! Cincinatti is one of the two hospitals that specialize in EoE, the other being the Children's Hospital of Penn (CHOP). His areas of focus are in Eosinophilic Esophagitis and GERD, both things Annabelle has! I feel like he is the golden ticket.

Soonest appointment available, July 1st. I took it without hesitiation and put on my hard hat and began to think around. I called my pediatrician and spoke with Dr. Young, I am so glad I got her on the phone and explained the situation. As soon as she heard Annabelle's diagnosis, she began pouring with sympathy as to how sorry she was that I was beginning this nightmare. She explained that a good friend of hers is living the same hell and is currently at The Children's Hospital of Philadelphia but still living a nightmare. Then she excused herself and began apologizing for not being very PC and tactful over the phone but wanted me to know that she understands what I am fighting against and wanted to do anything to help. I explained the situation and asked if she could pull any strings to get me in sooner, without hesitation she took the phone number I had and called the DOCTOR right away. They spoke for a bit and he asked that I send over Annabelle's medical records and he would get her in right away. Ta-Da! I feel like a woman on a mission and nothing will get past me. I never knew I would have to work so HARD to find answers and push for help for my daughter but I am. And I will continue to jump thru whatever hoops I need to do the best for my little girl. No matter what.

So now we are waiting for the hospital to call us about where to send medical records and when our appointment is rescheduled for. I cannot wait to take our trip down there, I pray we get good news, at least a different treatment plan. OR even if this doctor does agree with our current treatment plan, I would like to hear that. Because right now I have lost of questions and reservations as to what we are doing. I also pray she doesn't get worse too fast and we cannot see this new doctor before needing immediate help here in Richmond. Fingers crossed!