A Happy Post!

I really hate to eat my words later – but I am too excited to not share. 

Annabelle is doing so wonderful right now! ….i just don’t know why.

Granted, she is sick with her sissy’s shared cold so she doesn’t look so fantastic, she has a snotty nose, her coughing is just terrible and her temperature fluctuations are making our hearts skip a beat in nervous anticipation over what it may do (remember before, anytime she would run a temperature, it would take days to balance itself from unconscious 93 degrees – 104+ and unresponsive) Right now her temperature gradually rises and will balance itself with a luke warm bath. We aren’t giving her any meds – just watching to see how her little body fights this. This is the first time Annabelle has been sick since last year, when she went into auto-immune and landed herself in the hospital. After 3 months of no relief from the illness, her first endoscopy was performed and led to our first diagnosis of her Auto-Immune Disease, Eosinophilic Esophaghitis. I’ve been scared to death to see what her body will do to fight an illness and the time is here, I am so very proud of her and relived!! Im also so grateful this is simply a cold and not the flu – that could easily be a different story all together. Fingers crossed she fights this like a normal little kiddo and we move forward. This is a huge test for Annabelle!!

I am also VERYYYYY happy to brag loudly for a moment over my latest accomplishment!!! Annabelle’s granulation tissue ended up producing a total of three trouble areas on her tummy around her g-tube. I hate, with a royal passion, silver nitrate treatment of burning the tissue off her stomach. I am scared to death FOR her and absolutely hate to subject her to that pain again. I want more than anything to avoid any of those treatments for Annabelle, so much that I cancelled our appointment last week at the last minute bc I was scared :( Last week during my time off work, I decided I would get very aggressive over fixing this granulation tissue at home, myself, and I did. 

It involved a lot of baths and a TON of sterile gauze to keep exposure to any dirt/germs away.  

I repeated a process of:

• soaking split gauze in witch hazel
• applying it around the stoma
• securing the bandaging with tape and covering with another dry bandage, more tape, to keep it from getting hit.
• cleaning it all off
• letting it dry out
• applying a concoction of house remedies + steroid creams to the granulation tissue
• taping it secure for 1 hour
• removing bandaging, I list this as a step in the process bc it's involving ripping tape off her tummy that is holding the gauze in place instead of allowing it to move around. So imagine having a band-aid/tape applied and ripped off her skin 5-6 times a day. While this is a miniscuel task, it's one of our dreaded :(
• cleaning site, another painful process... I am literally holding her down and scrubbing an open sore and bright red sensitive flesh with a qtip more than 10x a day.
• changing drainage from split gauze every hour
• repeating a bath etc etc etc. 
• around the clock.

It was a non-stop, exhausting process of messing with her poor inflamed tummy BUT(!) it worked!!! I AM SOOO HAPPY!! Beyond that, I am so darn proud of myself and Annabelle for letting me work with her so much the last several days to correct it all. I’ve now set my mind that well never go to the hospital for treatment again, lol. Dream High, huh?

I spoke with the wonderful nurse from the Surgeon’s Office a few times yesterday, and also the Metabolic Dietician and GI. We all share similar concerns about the residue in the feeding bags and treatment moving forward with Annabelle’s diet, safely. I have already begun making changes but I can’t move forward without some type of medically directed assistance to what we can do for Annabelle. We made an appointment for tomorrow afternoon and will flesh a lot of plans out then. I can’t wait to share them with you :)

Overall, I am very proud of Annabelle right now. We are approaching the year milestone from when this all began and my anxiety is building. However, I am so happy to be in this place with her, watching her smile and enjoy days without constantly being plagued with pain. I hope this lasts, I hope this isn’t only a phase or calm before the storm. I hope this is a change and I pray we determine a plan tomorrow to give Annabelle a little more quality of life in the form of more foods and ways to continue caring for and raising her safely.

I wish I could say this is all a fluke of good days, or that they would come in due time. But I am giving ALL this credit to you for the never-ending prayers and support for Annabelle. I truly believe, without a doubt in my heart, these are prayers being answered and we're watching a miracle unfold before us thru Annabelle’s living, breathing, laughing, smile. I do not know what the last year’s intention was to put our family and life in the perspective it’s transitioned us, but I do know that we’ve found the best loving support system along the way. I do know I have seen miracles unfold before me and I believe we are watching another right now. 

At least that is my biggest prayer, 

Let this be a miracle, let this be the time in which Annabelle is relieved from all her pain and suffering from the last year. Let this be the change and hope we have all been pleading for. Let this be the moment of ending tears and worry. Let this become the flood of resources, help & direction we have been searching to provide Annabelle with the best quality of life she deserves. Please God, let me be correct in this prayer and wish.

Lazy Snow Day

Just a lazy little girl lately. 

Today I am grateful for a snow day that wasn't welcomed but became a hidden blessing in disguise. Annabelle has been quite tired the last week. I am happy with her energy when she looks well but I don't like the amount of time she spends curling in a ball or wanting to relax (not to be confused with taking a nap! That's an impossible term to be used around this two year old!) 

Our nurse wasn't able to get her to eat anything today. She slept until 830a (her usual wakeup time is around 630). She's just so worn out. But then again, with this weather, don't we all feel that way?! Annabelle's had quite an appetite lately with the few safe foods were allowing, so I don't know where this new idea of zero appetite has come from! Hopefully it's short lived. 

This is one of those days where I'm grateful for the horrible tube. I don't have to stress over her not eating. I get to make sure she's well hydrated and fed, whether she does it herself or not.

Her site is looking worse. We keep it cleaned and within an hour or so, it's drained and left crusty residue all over her tummy. It's bleeding all the time and the granulation tissue is spreading :( this upsets me so much. She's handling it well though. It's sensitive but she's a trooper while we clean and reapply dressings... Ripping tape off from her stomach, scrubbing the site with cotton swabs to get all the yuckies off, applying medicine etc. The kid just amazes me. 

Tonight were all snuggling under warm blankets and watching the snow fall. It's little days like this that somehow mean the most and were least expected. Annabelle needed mommy and daddy home today. I'm so glad we were able to be here with her. Thank you for this day. No eating, little energy and bleeding tummy - but a happy little girl laying in my arms and for that I am grateful. 

More happy days, more insurance frustrations

The thought of settling with the diagnosis of ‘we have no diagnosis’ has been difficult the last couple weeks. Annabelle is always showing us more signs for whatever plagues her little body. I want so badly to love and treat her like a normal little girl but it’s difficult. We are trying though, and I am happy to say that lately, we’ve had more stretches of better days than bad days than we’ve had in a long time. This makes us so grateful, and fearful at the same time. We pray it will last, and we fear trouble lies ahead. 

We’ve had more labwork repeated a few weeks ago when Annabelle’s wasn’t feeling well – it showed her amnio acid levels were again off the charts, and her ammonia levels were raised, but not dangerously high. These are our usual results.. abnormal is our new normal.

The newest concern is what is happening within her tummy and what we’re seeing during feedings. A few weeks ago I began seeing sediment or something, inside Annabelle’s feeding bags.. I was immediately concerned. Weve never seen anything like this before in her tubing or bags. A few days later it began to get worse – to the point it is right now. Within hours of hooking Annabelle to a feed, this green pore-like matter fills her feeding bags and tubing from her extension connected to her tummy all the way to the feeding bag itself. We have done everything we can think to eliminate the possibility it isn’t coming from Annabelle. We have switched from tap to only bottled, purified water, we only use brand new, packaged tubing and feeding supply (although this has really started to cost us since we are now using above what insurance allows), we have opened brand new cans of formula, water temperature, everything. Inside the home, outside the home, day – night, zero food in Annabelle’s diet or a usual diet, it’s always there. It’s disgusting.

While Annabelle has been having many better days than rough days, I’ve unfortunately noticed that when she doesn’t do well – it’s extremely fast. Literally within minutes sometimes. I used to be able to recognize if it were going to be a bad couple days, or start gauging if she were heading downhill, but I cant anymore. If she’s going to take a turn for the worst, it comes on faster now than ever.

Last week was hard on Annabelle. For a few days she had a tough time. Her nights are beginning to get very restless again, she’s been waking crying, screaming in pain and struggling to get back to sleep. Last week I noticed she peed thru her diaper (a constant battle), I changed her and she remained asleep. I checked on her a few hours later, and she again had peed thru her diaper, another change (diaper, clothes, bedding etc) and still, she remained asleep. This repeated again and when she wasn’t waking the third time I began to get nervous.. It took entirely too long to wake Annabelle up. My heart was in my throat. She struggled to stay awake most of the day, she spent her entire day laying around and pleading that I curl next to her and snuggle.

These are the times I am most grateful to have our nurse with us. She can monitor Annabelle’s BP that remained extremely low, and continue monitoring her as I do what I know to do best, just be mommy and not a nurse. It’s the best feeling in the world. Annabelle is getting the care and loving she needs and I know in the very best of hands, finally. The day was long and the next day continued the same way. The last several days since, Annabelle has done very well but continues to have spells where she hits a wall of sheer exhaustion and doesn’t walk or move around, she just lays or wants to be held. We’ve been doing her feeds with less volume but the same timing around the clock. I am wondering if she needs to be on a more continuous feed to avoid these spells of becoming so lethargic. I just don’t know what brings them on to weigh what I need to do to help her avoid them.

Insurance has been my biggest battle lately. Insurance isn’t covering any nutritional formulas and very little supplies suddenly. I am spending hours upon hours and hours negotiating and PLEADING for coverage without any headway. Here's my favorite converation:

Idiot Insurance Guy Representing A Company That Believes They Are Doctors And Can Decide What is Necessary For My Daughter Despite An MDs Orders: Mrs. Bishop, your policy clearly states that it does not cover nutritional formulas, I am trying to help you understand that.

Me: I am trying to help you understand that this 'formula' is a medical necessity and absolutely should be covered, I don't know how it isn't!

Idiot: It's formula mam, an insurance is for medical purposes - we don't cover band-aids, diapers, we don't cover a baby formula. 

Me: THIS ISNT A FORMULA! This is a MEDICAL FOOD that is only given thru the tube hanging out of my kids stomach.

Idiot: That's a matter of how the nutrition is given, that is entirely separate from a formula itself. 

Me: One can costs hundreds of dollars and can only be ordered with a prescription, how can you say 'its just a formula'. 

Idiot: You and I have both discussed this as a nutritional formula Mrs. Bishop. Formula is for nutrition, but a formula is not medically necessary and covered.

Me: This formula is the only thing saving my daughters life!

Idiot: You're right Mrs. Bishop, nutrition is one of the biggest keys to life, whether it be by a formula you drink, thru a tube, thru fruits and veggies etc. Nutrition is absolutely key to surviving. 

Me: My child cannot eat food like you and I. She cannot eat fruits, veggies, meats etc to sustain - her life depends on this formula! It's medically vital she has this formula to survive. 

Idiot: We as your insurance company are not denying you to provide your child with the nutrition she needs, we are simply not able to cover it under your policy, it's not part of your coverage. 

Me: No one can afford the monumental costs of these formulas. I cannot afford the costs of these, without coverage, I cannot feed my child - prescription or not - I can't afford it! 

Idiot: Mrs. Bishop, would you like me to send you a copy of your policy, maybe that can explain things better. 

Medical Supplies and Formula Coverage for the month of October only:

Formula coverage only for the month of January:

And the worst phone call of all - the phone call that brought me to my knees in tears:

The Home Health Agency that employs our nurse informed me last week that I have an outstanding bill of $9,870 that needs to be resolved before they can allow our nurse to continue working for us. I wasn’t aware that insurance wasn’t covering the nursing care! Apparently our primary insurance policy is only willing to cover 30% but Medicaid will not pickup any of the difference. Our nurse works under a Medicaid Waiver (EPSDT), therefore I have always assumed this is a Medicaid covered service. Never once was a cost discussed when I hired our nurse, nor have I ever received a bill until now. I cannot live without our nurse – she has been the ONLY lifesaver and blessing to our family since Dr. Young. We simply cannot continue without her. I also cannot work without the nurse in our home. There is no one that can care for Annabelle beside myself, AK and our nurse. We’re in such a terrible place and I pray with everything the insurance battles are resolved soon. My last conversation was made crystal clear “I don’t know what to do to resolve this, I have never been informed about any outstanding bills until now, but there are two things that I do know for certain. 1) Annabelle cannot live without this nurse, she is a blessing in our home and Annabelle’s care fully depends on her being with us. 2) I do not have $10,000 to give you. So please tell me what I need to do on my part to resolve this issue, because I cannot fix this on my own.”

I've said it before and i'll say it again - you can be a millionaire and not be able to afford the costs associated with a sick child. We have two insurance policies and make great money - and it's not even a fraction of enough to provide the proper care Annabelle demands. The poor child didn't ask for a broken little body and she sure as hell shouldn't be denied the help she needs because of financial reasons. 

Side Note: Please don't allow this post to carry someone on a political / health insurance rant. The changes in the last health care have rearranged our coverage so substantially it has killed our family more than I ever believed to be possible. Moving to all the new plans and coverages that are mandated, Annabelle STILL does not receive the care she needs - Enteral Formulas are still not covered. Prescriptions are still not covered. The expenses haven't been relieved, our premiums have only doubled and the bills have piled faster. So please, do not reach out to me on an insurance educational standpoint. We have sadly, done plenty research on our own.

Annabelle’s tummy is infected again. We have a steroid cream that we are allowed to use for only two weeks max and then have to stop using for at least a week to give her skin a break. Within days we stopped using it this last time, her stoma produced two separate trouble spots of granulation tissue. The area around her tube is so red and sensitive. I keep wondering if this is why she’s been waking at night crying in pain. In a sad way, I really hope that’s the case – because I know it can be resolved. The very worst though, is that it is going to require another trip to the surgeons office for another silver nitrate treatment to have the tissue burnt off her stomach. God it’s the worst darn thing ever.. I hate this most for Annabelle – of all the terrible things this kid has had to endure, this  is undoubtedly the worst

Today is supossed to be a beautiful day. Annabelle woke up a few times during the night crying but overall has had a good morning. She's pleading to go outside and we're going yo do just that. We're not looking forward to the upcoming snow, we need more 70 degree days of sunshine. Our entire family needs fresh air and today were on a mission to find it. 

Outdoors we are, side walk chaulk, bubbles and a sliding board. 

Happy Sunday. A Blessed Sunday.

Today is a tough day for Annabelle. She's been doing so well lately and suddenly she's turning downhill... I will update this evening on whats been happening the last couple weeks - but keep her in your prayers today, please.

Feeding Tube Awareness, in our world.

  

Today concludes Feeding Tube Awareness Week. 

A year ago this week, I remember watching so many videos of these heroic children and fighters that were living with a feeding tube. I remember watching these videos and scrolling pictures that we're being uploaded with tears STREAMING down my face at the sadness of it all. The song that played along was intended for happiness from it's creator but that was the last thing I could hear, I could only feel my breaking heart for why these innocent children were living such a sad, sad life. I stayed involved with these families and have continued to follow their stories, because unlike my own daughter, they were also sick. Annabelle was on the beginning of her toughest journey. March began our year from hell but exactly a year ago, Annabelle was deteriorating quickly. I found myself becoming involved with groups of children with severe allergies, feeding issues etc. This was beginning to be our life, the doctors appointments were quickly beginning to fill our calendars and I could have never, ever known what a year from then could look like. One thing I DID know however, was that my child will never be put on a feeding tube. She will never become so ill that I cannot save and nourish her on my own. Because after all, Annabelle will eat food on her own! If she can eat food, we have absolutely no use for a feeding tube. Ever. End of story. 

 

All that to say, my uneducated knowledge of feeding tubes has unwelcomly been changed dramatically during the last 52 weeks. In many many ways I used to associate a tube as a placed, set device that simply delivered food. Delivered food to only those gravely ill and unable to eat.

• I never realized or respected the intense amount of care and maintenance feeding tubes involved. 
• I thoroughly underestimated the hell the Tubie goes through, routinely, to use these devices. 
• I didn't even consider that a parent of a tube fed child can never go out again or leave their Tubey with someone that isn't educated and trained on tubes. 
• I never imagined the weight or burden on the family, that feeding tubes impose. 
• I didn't consider all the ways the life of a Tubie could be changed and impacted.
• I could have never fathomed the sheer amount of medical supply needed to tube feed.
• The costs associated never crossed my mind, I ignorantly assumed insurance covers it. We have insurance, they have insurance, I'm sure it isn't a burden!
• Most importantly, feeding tubes are used for an incredibly long array of reasons.
• Feeding tubes are life saving devices. Annabelle's feeding tube has literally saved her life, whether I love or hate the thing or not. 

The first hurdle of transitioning life with a Tubie was the upfront emotional support and lack of understanding from our family and friends. Annabelle started off with an NG Tube instead of a Gtube. We couldn't hide the tape and tube across her sweet little face. This was a monumental change in our family.. For so long we knew Annabelle was sick but with this change, it was suddenly very present and in our faces everywhere. It took weeks, months maybe before I could see past the ugly tube. It didn't take Big Sister Madelynne as long, fortunately. When Annabelle would laugh or do something silly, Mady loved it and asked if I saw that too - with a blank stare, I found myself so blind sided by the hideous tubing and taping, that I would forget to watch my little girl living!! I hated the feeding tube. I hated everything about it. But I loved that my daughter was finally thriving...

Stores and the public are difficult. To be honest, adults are much worse and more critical than children. Children are innocent and curious - adults are narrow minded and judgmental. I can't tell you how many times, with both an NG Tube and Gtube, we've been told by complete strangers;

"Do you have to do that right here.. People can see you!" 

"Shouldn't she be in a hospital and not out shopping?!" Excuse me for needing to make a target run for more Tylenol, wine and diapers. 

"You know, I'm old school and they pushed me to use formula in the hospital too - but there are a lot more breastfeeding resources now.. My daughter and my daughter-in-law breastfeed, it just takes a lot of work and not giving up." Thank you, as I fill a feeding bag and rehook tubing. I believe our situation is a long stretch from breast feeding laziness. But thank you though! For reminding me of a very personal and sensitive fear that I have about not being a good enough mom in the beginning with Annabelle, that maybe had I tried and nursed longer, then maybe we wouldn't be here.. Thank you complete stranger.

Mady educates kids very quickly if they stare too long at Annabelle's Tubie. She will pipe up and announce: "That's my sister. She has boo-boos in her tummy so her Tubey is like a straw and it feeds her. You don't have to stare, you know."

As much as I can, when asked and approached nicely, I am always positive about our Annabelle and always keep it tiny, short and simple for adults and kids that are intrigued. I admit I was a person that would stare before, purely because I was curious about their situation and what constituted their need for tube feeding - because often, tube fed kiddos don't look sick! Never though, did I relate that tiny tube to the monumental life change it puts on a persons family. Had I known any of what I know now, those stares would have been a lot less "intrigued for my own curiousity" and a lot more looks of compassion and support from one mom to another. That's what feeding tube awareness week is for. Simply for the education and awareness for feeding tubes purpose and what lives are like for those that use them. To help educate and provide a little understanding to the incredible supporting friends and family like you! To people like me a year ago, that are compassionate to help, but curious and oblivious to Feeding Tube reality.

Meet one of our best friends, Ryan. His mom and I became instant long lost sisters from the first time we met; outside of a doctors office, in cold February while we both looked exhausted, run down, desperate and in yoga pants. Sweet Ryan had just become a Tubey of a G-tube, and belle was a few weeks away from receiving the same diagnosis Ryan had just been given. My heart poured when I first met Ryan, I looked at this sick little boy in a car seat and his sweet face haunted me for days, I couldn't sleep. 'That baby was so sick.. Belle cannot possibly have what he does.. That moms life just became hell. And the equipment, oh god all that equipment!' A few weeks later I was trying to comprehend our first diagnosis of Eosinophilic Esophaghitis, just like Ryan, my life was upside and so I called the only person who could calm me in this situation; Ryan's mommy. She promised life would freaking suck but it will be ok. Soon after, we truly began to get to know their family. Ryan is sick, he's tube fed and he's been thru his own share of hell - but a year later, I'm not haunted by that little boy and his intimidating equipment, I am empowered by another family who truly understands our hell. Ryan's mommy coached me all the while we began our tube feeding days and held our hand because she knew I didn't want it more than anything. She promised me it would suck, but will save her life. Ryan visited belle in the hospital for Tubey Buddy support after she had her gtube surgery. Ryan's older brother plays with Mady and they both laugh and joke as if their lives are not upside down in their families. We find normalcy in our insanely abnormal families. Ryan is Annabelle's little hero, Kelly is mine in this crazy EoE / Feeding Tube world.

Video 

The supplies is overwhelming. The storage is a joke and always changing and evolving. The costs are monumental. 

 

Here is one week, seven days worth of supply:

4 cans of BCAD1, $149/can. $600 a week

1 can of Anamix Jr, $129/can

35 (minimum) 60cc syringes to vent (release gas off her tummy), $47

At least 60, 5ml syringes. Used for medication administration, flushes before and after venting, feeds, meds etc. $36

7 feeding bags, $22

7 Ferrell bags, $18

2 right angle feeding extensions, $44

2 bolus feeding extensions, $36

Sterile water for flushes while were out and not at home.

35pkg (minimum!!!!) 2x2 split gauze for drainage around gtube / cream application etc., $16

Tape, tape, tape of every variety for numerous uses: keeping button in place, taping extension secure, securing extension to clothing, taping gauze together so it doesn't fall off, taping gauze to skin so it doesn't move and irritate. Etc

Mepilex used for heavy drainage when site is bleeding, $19

DuoDerm: skin protectant from the tape, $15

Steroid cream for granulation tissue, $45/tube

Neosporin, $8

AMT clamp, $16

Million, Cotton Tip Applicators for cleaning, medicine - everything! $5

This list doesn't include the following expenses:

1 Gastrostomy Tube that must be changed every 60-90 days, $239

2 IV poles, $129, each

Kangaroo Joey Feeding Pump, $1,600

Red Bull for mommy and daddy, 2/$5

Blending bottles to mix formulas, $6-10 each

Numerous sheet protectors for leaks, $25 each

Various backpacks and bags for on the go, $79-$180 each

Tubey pads to make it more fun, $5 each

Billion stained clothing from either one or combination of: greasy meds, stomach bile, medication, formula, blood, granulation drainage etc

Various medications, co-pay $10-$50, without co-pay $20-$600 each

Linkadoos in every car and all over the house to make feeding easy everywhere, $8 

The rare occurrence we try to leave the house and must have a qualified nurse care for Annabelle. We currently employ a nurse who works for us 40hr x week. If we would like time away, we have to pay additionally out of pocket for her to watch Belle on her own time. Obviously, this can only happen when absolutely necessary.. 

The rough costs for tube feeding Annabelle right now is nearly $1,000 a week. 

With the costs added for using a medical supplier to facilitate all our supply shipping, that's over $4,000 each month.

This is tube feeding supplies only. 

Some people are very fortunate to have all their costs fully covered - but the majority of us are not as lucky. The majority will have some costs covered and many will have no help paying these bills at all. This is a monthly number! This is the cost it takes to keep your child alive, children and people that use feeding tubes, do so because their lives literally depend on it. These numbers and pictures are their reality. This is our families reality to saving Annabelle from a nutritional standpoint alone.

This is Feeding Tube Awareness.

What I would love for everyone to know about my Tubie is this:

• Even though she has some fat and love around her thighs, doesn't mean her feeding tube isn't essential. 

• Most tubies do NOT look sick! While this is hard for you to understand, as the parent of a Tubie, this is our proudest moment. Look at our children and how well they look - dig slightly deeper and recognize the HELL we survived to bring our children to this point of looking well.

• No parent and no child wants this or would ever ask for this life. We smile and appear strong, but only because it is our life and we don't have a choice. Every day, every hour, every minute.

• Treat our babies like one of yours, in most aspects. When our tubie melts down in a restaurant or at the dinner table, understand eating and these normal family routines have been a picture of heart-wrenching change in our lives. Some of these kids like Annabelle, used to eat but now cannot. Some have never put food in their mouths in their life and can't, but want to. Some children are just learning to eat, and it may only be one food. Nonetheless sitting at a table for an hour while everyone else eats is an adjustment regardless the 

We too used to have a routine around the dinner table until it simply became unfair and uncomfortable for all of us. For over 6mon Annabelle didn't eat food and we never sat around a table any longer. Now, she is allowed a small amount of food but is intrigued and wants so badly to eat what everyone else is having. She has little patience to sit back and watch as it takes us 4x longer to eat than it did for her to enjoy her 1/2 bowl of green beans only. Meal time is a continuous adjustment.

• When we have friends or family over, or vice-versa, we love and appreciate you including Annabelle, but please, don't take on the stress of specialized meals on her account. Her life is part of everyone's and sadly, we cannot accommodate all the differences only for Annabelle- it's been a compromise on all accounts. When you're planning your meals, let us take on belle's menu. We always travel with all her needs. Have us over and let us all pretend to be as normal as we can :) we like the escape every once in a while.

• A Tubie mom isn't crazy or neurotic. She's protective and aware of her child's every move. She is aware, sometimes too aware of the hidden dangers everywhere. When she appears the most frustrated and overbearing about her baby is usually when she knows something isn't right and is 10 steps ahead of where life is about to take her. Tubey parents can read their children like a mechanic can listen to a car and diagnose it. Just like any parent knows their child, we also know when things aren't right and we que into them. Something being off could mean a laundry list of things and we are constantly, I mean CONSTANTLY, gauging and measuring them! So when we're looking our worst and appear to be unraveling, that's the moment we need the support and non-judgements the most.

• Do not. I repeat, do not lecture me or a fellow Tubie parent on what you did for your picky child. It's belittling and hurtful and I'm certain you didn't even know it. I promise, we have read every single article, story, blog and support group post on how to help our child and are doing so more often than you check Facebook. We take our children to doctors and specialists, and therapist for help. We've tried everything we can and beat ourselves up daily that we may not be doing enough. While your advice is coming from an honest, sincere place, please keep it to your friends that have children more similar to yours. A Tube Fed child is it's own species, and every single Tubie has their own story. I have yet to meet two that are alike... but i'm just getting started(!)

• Our babies are our babies, not medical experiments. They are siblings to another, they are unique and hilarious, strong and sweet. They hear what you say when they're around and they understand more than you can imagine. They do not like being recognized based on their Tubey, call her Annabelle and ask her about Mickey Mouse. Please.

• We have other children too. Her name is Madelynne and she is equally awesome. She is also strong as hell, smart, funny and sweeter than ever. She has so much more to say than to answer the repetitive question,"do you help take care of your sissy? She's sick huh?" Mady loves to color and spell and more than anything, she loves individual attention. She's seen more than most toddlers should see. She's experiences hospitals on the other side from her sister. She's watched her sister subjected to pain and receive feedings. She sleeps in the same room with the loud feeding pump that beeps constantly. She has nightmares (dreams?) when Jesus wraps her in his arms and tells her that he is taking care of her sissy so she doesn't have to be afraid for her anymore. She is shy of 5yo and asks if Annabelle is going to live forever and I can't answer her questions. Mady is almost 5 and is an amazing little girl. Her sister is a Tubie and she's passionate about helping her sissy and defending her at the playground when everyone stares. Invite mady over sometime so she can remember to be a kid without being a sissy to a Tubie. Feed her French fries when Annabelle isn't around!! ;)

• Ak and I are the same people we've always been. We like funny movies, a huge array of music, we love time spent with friends and low key life. We're also tired, just like you too. We try to make ourselves feel just like any of you and remind ourselves that we're no different even when our lives feel like they're from a completely different world. We like normalcy though, and love to be reminded what life used to be like. We still have a beer when the night is right and wish we could share it with others more often than what life allows. Our life is restricted though, dinner out with friends isn't easy, a trip to a germy museum is dangerous and an adults only evening on the town just can't always work out. We're hard to be friends with, but I promise we're worth it! One day, I just know it, one day life will begin to slow down and everything will fall back into place. Please remember that were a family built on only the best of intentions, but struggle to keep everyone happy. We're the same ol' Ashley & AK though. We love and miss all of you that we haven't been able to keep as near as we used to.

The parenting of a tube fed child, the parenting of a non tube fed child, the spouse of an overly tired fellow teammate, it isn't easy. But this is our life. A year ago, I could have sworn my life wouldn't be where it is today. I never imagined life could be so exhausting and expensive to keep a loving and deserving child alive, but that's our reality. Feeding Tube Awareness is about shedding light to all those that are on this journey with us and supporting us, but sharing knowledge into our lives, one winding path at a time. Annabelle is our rockstar Tubie and she's strong as hell. All Tubies are superhero's, without a doubt. The next time you recognize a kiddo or person walking wearing a backpack with a tube line trailing around towards their tummy, or you see a parent shuffling medical supply to feed her baby - instead of stares of judgement, offer a simple smile and head nod of acknowledgement. Acknowledgement and small bit of understanding into her life thru what Annabelle may have just been able to share into yours. Recognize that parent likely hasn't slept full nights of sleep in years, she's likely being robbed daily by healthcare and desperate to just feel 'normal' in a very public place. That person that looks frazzled, never asked for that life but she's stronger than ever! I promise you that much.

http://www.feedingtubeawareness.com

Mystery Diagnosis

Updates aren't always easy. It takes me so long to update following discouraging hospital visits. It's not that I want those that care to stay in the dark on our journey, I simply cannot rationalize the way some doctors think or make sense of the appointments myself to even try to share them with you! Unfortunately we had two of them last week and I am clueless what to share about either - because neither of the appointments made sense nor what we needed to help make any headway for Annabelle's care.. safety.

Monday we met with Gastroenterology. It's important to remain updated with our GI (although she's new for Annabelle, she's our 4th GI doctor in two years.) We did not see the GI for tummy reasons, we didn't see her for her Gtube site, feedings, weight/health, we didn't meet with our GI because of our Eosinophilic Esophaghitis diagnosis. We are staying in contact them solely to keep everyone up to date, weekly/daily/hourly re: any health changes in Annabelle and what that means when riding the cusp of a transplant. Annabelle's health changes often, and when it does it can decline rapidly to the point we could easily and quickly loose the potential as a candidate for a transplant. The specialists and our GI can gauge this better than I can, so for that reason we make visits simply for checkups so we can all be ready at the drop of a dime when the time comes to launch into whats next. 

I did learn more regarding the transplant at this last visit though. What I was interpreting as a 'Partial Living Transplant' is not partial at all for Annabelle. What would happen is that the living donor that is a match and donating their liver to Annabelle; 1/2 of their liver would be removed. Annabelle's ENTIRE liver will be removed and replaced with the donated portion of the new liver. The donated 1/2 liver will act as her ENTIRE liver. So while the donor is a partial living donor, Annabelle is still the recipient of a full liver transplant. This scares the bejezus out of me. Annabelle's immune system attacks absolutely everything. There is very little that we've found to be safe when it pertains to her Auto-Immune Disease, and simply the thought of not salvaging her own liver and trying to patch something together, the process of asking her little body to accept and not reject an entire new organ - God that is absolutely terrifying. I left with a nauseated stomach. The last thing I want to is to ever hand my child over to a surgeon for a transplant. However, for a while now I have been told by so many that this will save her life. I've accepted and embraced the transplant idea for the safety and best interest of my baby girl. And now, I've suddenly got cold feet at the thought of it's process. ICE COLD Feet. I want to pull the plug on it all, I want to cry and throw a tantrum, and SCREAM for all this to PLEASE STOP! JUST STOP! Just let me take my daughter home! She will be fine.. she will be OK if I love her enough. She will survive if I just do exactly as I am doing and read her bedtime stories. Maybe if I take her outside more and let her try to live more like a normal two year old? Yes, maybe that's it. Maybe if we just pretend this isn't all happening, she will be just fine! Just make it all stop.. make it all slow down and STOP! Please God, for this child, make it just stop :'(


Tuesday was another day and another round of hospital visits; Genetics, Metabolics, Dieticians, Labwork galore. Tuesday was also another flood of unexpected news that I wasn't prepared to hear.

This is the part where I still cannot wrap my head around the appointment and the conversations that took place in that room. There were a total of 6 experienced DOCTORS in our room at one point, all of which had a different set of questions and concerns for me. Names kept getting passed but who they were and which department they represented were hard to retain during the chaos. Some names I was putting with faces for the first time and were people I had been exchanging emails/phone conversations with for a period of time. Occasionally there was a resident who wanted to pry for information I was too tired of repeating nor did I have an interest in devoting my time to. It was chaos.. all the way to the moment we were leaving.

Basically, the thought process from the Geneticist and Metabolic Dietician we've been working with is that Belle does not have a Urea Cycle Disorder. This conclusion was based upon labs that did not ALL match perfectly for any of the UCDs to give us a perfect match. We have a flood of positive clues to a UCD but a perfect match to any of them in particular.

There is good and bad with this decision.
The Good: If it's not a UCD, then it's not OTC - which is great news for everything OTC means. If it's not OTC then there is no immediate reason we need to press for the transplant. And as you know, Im suddenly on board to cancel this whole transplant idea as quickly as I can after the Monday appointment!

The Bad: Whatever is wrong with Annabelle, presents itself with the exact same symptoms and also with the exact dangers of OTC. So while we don't have the OTC diagnosis, we still have all the potential dangers of the disease, but without an explanation. To me, this is 10x worse. My fear as a parent is that if I do not know what is wrong with Annabelle, then I don't know what is safe or dangerous in 'raising her!'. What if she accidentally eats something. What if a doctor puts her on a medication that contains a dangerous ingredient?

Perfect example: Soy can kill Annabelle. Did you know soy is in liquid anesthesia? Had we not known her allergies and their severity, Annabelle would have never woken up after her very first surgery last year! Did you know the flu vaccine has protein in it? What if I wanted to be cautious and give Belle the vaccine? That would have landed her in a coma within a matter of hours/days. These are the true hidden dangers that I KNOW about. Without a diagnosis, I have no idea of the hidden dangers that we DONT know about! I live in constant fear everyday that I will buy a shampoo or lotion that can hurt her, that running too far down the driveway and watching her fall down bc she is fully depleted of energy, that it can damage her even more. The fear is relentless and never-ending.

The Bad in not having a diagnosis is discouraging, heartbreaking and dangerous. I was NOT expecting to walk into the appointment last week and be told that doctors have concluded our best shot at a diagnosis, is now dismissed.

With that decision, we then evaluated Annabelle's diet. Because without the supporting diagnosis, the formula regimen she is on, can actually be more dangerous than helpful. However, we learned without this formula, her condition and health deteriorates faster than anything we've seen. So were stuck between a terrible rock and hard place re: what to do with Annabelle's nutrition. The formula isn't safe. The formula that should be used instead, is more dangerous to Annabelle than anything else. She cannot go more than 2hours without being fed. We chewed on a couple thoughts and suggestions as to what to do with her diet. I did ask to have a dietician come out to our home and help work with us to make safe 'meals' (ha! what a joke! a meal? we wish.) But until a dietician can come out, we need to meet with our allergist again to do a repeat of all our allergy tests to ensure we will be including only the safest foods in her 'diet' moving forward. They cannot use the tests we performed over the summer because they are now out of date and allergies could have shifted. (Albeit, we didn't have many foods we could offer at that point anyway.. 3-4 at the most. While the doctors are fearful those 3-4 foods are no longer safe, I am hopeful that maybe we will gain 5-6 this time instead of losing the little we have.) So back to Norfolk we will be traveling to touch base again soon with our Allergy team.

I broke down in the office Tuesday afternoon. It had been a long week and it was only Tuesday. The appointment took almost 4 hours and Annabelle was overly tired, her anxiety was overwhelming with so many doctors in a room. Our nurse was FANTASTIC with her and then my mom joined us and I asked if she could take Belle away to go play somewhere else for a much needed break for all of us. After Annabelle was out of the room, I broke down. I couldn't hold myself together. The Geneticist asked "What is wrong mom? What is bothering you so much?" I looked up thru mascara run tears, "Don't you get it? I want more than ANYTHING for an answer for that little girl! You don't live at home with her and in fear. That isn't motherhood! I shouldn't be scared of my own child and doubt every ounce of my parenting because I am scared of hurting her somehow. You cannot POSSIBLY imagine the sinking gut feeling I swallow over every single time I walk into her room at night/morning and literally hold my breath until I feel her WARM skin. Do you know what that reality is like? To anticipate your child to be dead laying in her bed as you move about your house. It's raw, it's real, it's nauseating and I HATE every bit of it! I have put that child thru HELL to gather as many pieces of this puzzle together for you and today I was told 'start trying to feed her food, we need to back away from the formula, we're discrediting the original believed diagnosis but we're not going to actively figure out what this is either, we'll see you again in 7 months'. I am on the same page with our plans for the immediate future, I hate them yes, but I am on board - what I have a problem with is the feeling I get that you're not going to help us find an answer for Annabelle and that little girl and our family NEEDS an answer. Where do I go? What am I supposed to do? I AM ONLY A MOMMY! I am NOT a doctor, specialist, nurse or wizard - I am JUST a mom and I've put all my trust into the health system to save my daughters life and you're all turning your cheek. What am I supposed to do???"

What she said next was less than reassuring but did offer a slight bit of comfort. She stepped forward and put her hand on my shoulder as I held my dropped head and watched the tears fall onto my lap. I couldn't look up. I only tried focusing on deep breaths so I could stop crying (I HATE CRYINGGG!!!!) "Mrs. Bishop, I have three patients and now Annabelle makes four; I do not have answers for these children. I cannot find a diagnosis or explanations for cases like these four, no matter how much I have tried. Medicine is never-ending and always changing and evolving. Annabelle may be one of the so very special, but unlucky ones, that is suffering an undiagnosed and not-yet-recognized medical disorder. I cannot name it on a piece of paper but that does not mean we don't want the best for her. We just cannot give you an answer or guidance and for that, as a doctor, I hate just as much as you do. We need to follow the direction you have always led, and that is keeping Annabelle happy as much as we can, and now as 'normal' as we can.

The room was quiet. It was silent until the whispers of the doctors finally wrapped their thoughts quickly and slowly, and excused themselves from our room to further discuss anything else in the hallway (probably how crazy I am). I couldn't lift my head. I didn't have any, and I mean ANY words. I do remember mumbling 'thank you for today..' and that's all I could give from my dropped head. Annabelle's nurse handed me more paper towels/tissues and said, "It's going to be ok Mrs. Ashley, we will do everything we can for Miss Annabelle, we won't let her starve or hurt any longer." I remained numb.

I met my mom outside to collect Annabelle and then made the walk in the bitter cold outside to another hospital office to have even more labs drawn. It took three sticks to get blood and I felt terrible for Belle.. I guess we can't always be lucky for one-and-done easy sticks like we've been having lately. She fought this time, she screamed and begged to stop. Annabelle has been handling needles wonderfully lately until this day. She was done, and in her defense, I know it hurt. She is pretty bruised still and it's been over a week since the labs were drawn. Finally it was time to leave. We headed to Valet to get our car and wait.. and wait and wait for our 'red cahhh (car)!', Independent Annabelle prefers to carry her tubey backpack vs. wearing it these days. I think it keeps weighing her down and knocking her over..

On the car ride home from the hospital, I got a call regarding the sale of our home. The buyers want to move the closing date from Feb. 28th to the following Friday. I accepted and just as I thought we were ahead of the moving game, the rug was pulled from under us. I had been home alone with both girls for almost a month and now we had literally a handful of days to move. With the anticipation of snow coming during the weekend, we had only two days to get it all done. We've done it and that's where we are now. Living with our in-laws with half our things in boxes in our bedroom and the other half of our home in storage. Both girls are tired of moving, AK and I are EXHAUSTED from moving and life still isn't giving us a break or slowing down.

 Annabelle has been struggling with retching (Dry-heaving / trying to vomit but she cannot because her stomach/esophagus is sewn together), and diarrhea - this has been going on daily for almost a full week. The biggest issue is the fine line of her needing tube feeds nearly continuously, but that isn't allowing for any tummy rest. She has times where she is happy and playing, and then she falls and has long periods where she is completely exhausted and pained. The roller coaster we're riding is absolutely unreal.
 
I tucked her in with a heavy heart the other night. When I went to check on her, I immediately recognized her whimpers and moans in her sleep. I swept her soft brown curls to the side and she rolled over, exposing a pillow filled with tears. She continued to cry in her sleep. Dear Lord, can my baby not even have happy dreams of sunshine, rainbows and lollipops? She needs to hurt and suffer in her sleep too?  I am helpless to this little girls needs! She wakes and cries hysterically "Medicine mommy! Please!!!!!" and I have nothing to give her.
On that note: Thank you more than ANYTHING in this world, to all the selfless, loving and amazingly heroic people for your donations of support to Annabelle, because of you, I didn't have to ask Annabelle to wait another week for another prescription that she desperately needs to stay comfortable and without pain (relentless gastritis that just boils in her tummy and leaks out of her gtube site/hole, to also eat around the fresh skin on her stomachs surface), insurance isn't willing to cover the medication until Friday and we ran out last week.. I didn't hesitate or ask the crying child to wait any longer and paid cash for the damn prescription so my child could have some relief. Without you, I would not have had the ability to comfort her for another 3 days. Thank you, Thank you from the bottom of my heart and from Annabelle also, thank you.

Right now we are winging it, one day hour at a time. Yesterday we did get all our lab results back from the the last two weeks lab work. My blood boils when I read the sheets of abnormal labs. All I see across the worksheet is 'Elevated.. Elevated.. Elevated.. Low.. Elevated.. *normal*.. Low.. Low.. Elevated'. It makes your stomach drop when you read a worksheet like that, and then realize "But they don't know what any of it means. It's there. Something is so terribly wrong. And we don't have a damn clue what it means....." so we buy another day on a prayer. Oh hey Bon Jovi!