Tuesday, February 24, 2015

A crappy lower GI

A persistent battle with Annabelles little body is her lower GI system. No one will tell us what the problem is.. I struggle to even find a doctor to look into it for us. But the constipation and short amount of time that she becomes impacted is just unreal. Last night was no different. 

Soon after getting home, she began to complain that her bottom was hurting. I asked her what was wrong and she wouldn't answer me. She's too scared to talk about any pains. She would rather lie and tell us she isn't in pain, than tell us where it hurts so we can help her. It's heartbreaking. But it's our reality and in her defense.. When she needs help, it usually does involve more pain before it gets better. I don't blame her :(

Our evening was spent upstairs in the bathroom for two hours. Fortunately our neighbor is kind enough to take Mady to to dance class so AK and I both were able to stay home with Annabelle. She was trying so hard to pass the stool but it was visibly excruciating. I won't go into detail.. Just know this poor kid went thru hell. Once we were able to make headway, I ran to the store to grab more enemas and administered that. 

Annabelle is 3 and a half. She laid in the bathroom floor literally shaking from head to toe with pain so excruciating it took her breath away. As parents we try our best to encourage and help her.. We cause her more pain than we ever would want to see her in and she cries so hard in confusion... Confused why sissy is at dance class and she's paralyzed in the bathroom floor surrounded by her parents with tear-filled eyes. 

I wish I knew why this happens to her. Annabelles diet is so much more balanced than it's ever been, she takes mineral oil daily and we push fluids thru her tubing constantly. It's like her bowels just stop and won't move. 

I pray we get answers soon for this. It's getting so much worse when everything points that it should be getting better.

Monday, February 23, 2015

Snow fun and updates

Virginia has quickly become an artic place of misery. We're not fans of cold in our house and Annabelles little body doesn't handle it very well. We prioritize spending as much time making memories and having fun as we can, but safety often serves its limitations to the fun. I didn't want to pass this opportunity though. Sledding is just too important to miss. 

The snow fell and we got about 6-8in of fluffy white stuff. Oh it was so beautiful to watch and peaceful the next morning as the sun came up. Annabelle looked out the window and exclaimed "santa came!!" .. She's associated snow with santa. Oh boy 

We didn't wait long to decide it was time to hit the hills for some fun. Both girls were dressed in multiple layers. Annabelle sported a few more accessories that protected her Tubey and more for her face and head (that she quickly took off) 

She had a truly time walking in the snow but didn't take much time to adjust. She couldn't wait to drop in the snow and make a snow angel. She immediately asked to build a snowman. Within minutes she wanted to ride sleds! 

Annabelle is such a daredevil, she loved the adrenaline of racing down the hills and hitting the snow. She yelled and screamed, begged for more and laughed so hard. she was so happy. She was loving it!!! 

Then I watched her fall. I smiled and tuned into her every movement. She stumbled more.. I gave her credit that the snow is difficult to walk in.. And then I looked at her face. Just precious.... But no longer rosy red, her cheeks were white and lips were pale. She started getting so aggravated that she couldn't stand. My intuition was in panic overdrive and I began to get nervous. We've never let Annabelle play in the cold like this before, she doesn't balance her body temperature well. I decided to pack her up and carried her home as quickly as I could. 

Annabelle faired fine in the snow. The cold left her with a heavy bleeding nose and pooling blood in her tummy (I'm thinking from swallowing her nose bleeding). When I got her inside, her temperature was 94.1 (not nearly as bad as I thought) she didn't care at all. She wanted to go back and play. 

The girls had a wonderful time in the snow and spent several snow days taking extra long naps and snuggling mommy and daddy. It was a much needed break and opportunity for our little family to find moments to laugh and play with one another. 

Now... We're ready for summer ☀️

Monday, February 16, 2015

Quick update before the snow hits!

Each day that comes and goes, I am so grateful for our decision to keep protein in Annabelle's diet. I can see her flourishing literally before our eyes and it's amazing. Just last night I was clipping Annabelle's finger and toenails, a chore I didn't used to have to do bc her nails didn't grow, last night, I was embarassed at how long they have gotten since LAST WEEK that I did them last! I wanted to take a picture, but I would die of embarassment. It's just not something that I consciously remember to do bc it's never been part of our routine. I love that it now is :)

Poop Talk
Her poor little GI System is still struggling so badly in this department. She has accidents daily, usually multiple times a day. She is well pee-potty trained but her stools are so large, compact and painful that they are consistently an issue. She takes mineral oil as part of her medication routine daily, and while it should help keep things 'moving along', it also is a huge mess. Between large BMs, Annabelle strains so badly that she has lots of accidents. The mineral oil makes her stool very dark and stains e.v.e.r.y.t.h.i.n.g. She's ruined so many of her clothes, most all her little girl panties, numerous pair of pants and jeans. It's very VERY frustrating for AK and I. If we use pull-ups, she won't pee in the potty and makes a mess. If we use big girl panties, she will pee in the potty but has a poopy mess. It's a catch 22. Im not exactly sure what we need to do at this point, but the constant GI / stool issues are becoming more and more frustrating for all of us. I've told every doctor about them we've met and no one will address the issue or help. I would think her diet is balanced enough at this point that these episodes of constipation wouldn't be as common as they were before, but they're not any better. I just wish I could help her :( I wish she didn't feel like she was constantly in trouble for having accidents, I wish her little hiney didn't hurt daily, I wish her stools were normal, I wish all her adorable clothes we're ruined! Hopefully soon we will get an answer.

Tube Talk
It's that time again. Her g-tube needs to be changed. Fortunately we haven't had any problems with this tube, everything has been working well without issues. But the tube must be changed every 60-90 days. We will keep the same sizing of the tube she is wearing now and also keep the same style, the Low-Profile, Mic-Key Mini G-tube. The one that glows in the dark, that is. Our nurse has agreed to change the tube for us. This is one of those times again that having a nurse full-time comes with the most incredible benefits! There are absolutely NO words that can describe how grateful I am to just be able to come home and be a mommy, and not a nurse to my little girl. Our family is so blessed to have our nurse that is skilled and loving enough to care for Annabelle and also be able to change her feeding tube so mommy doesn't constantly have to be the one seen as the mean person who always hurts her. This is the first time I will not be home for Annabelle's tube change, and while my nerves are eating me alive - I am so happy to know she is in safe hands, our nurse will do nothing to cause her any unnecessary pain and when I get home, all the bad boo-boo's will be all done!

Snow Talk
Oh my goodness, the anticipation of the upcoming inclement weather is just too much to handle!! The girls are just beyond excited to see the snow fall. Annabelle asks me daily when she can go play in the snow (despite there being zero chance of snowfall in the forecasts). This weekend I finally answered her 'soon baby! Tuesday we will have snow!'. I feel two different ways about this:
First, I want to see my little girls play in the snow, laugh, fall, giggle, slide and shiver. I want to see them experience riding sleds down hills and build a snowman. I want to stay inside and prepare the heated blankets and warm clothes with marshmellow hot chocolate when they come back from being outside. I want my daughters to laugh as sisters throwing snowballs.

Secondly, I am scared to death for how Annabelle's little body will be able to tolerate the cold. It's so cold outside. In the past, a hot summer day or a chilly winter night would send her entire body into chaos with it's inability to regulate it's temperature. We spent months after months in hospitals because her body temperature would drop and skyrocket before our eyes out of control. Days when the temperature is as cold as it's been, Annabelle stays inside. She gets buddled up and carried to the vehicle that's parked in our insulated garage and then driven to the destination. We protect Annabelle from ANY sudden changes in temperature the best we possibly can.
She's doing so much better than before though. She is a completely different little girl than she was a year or two ago. Annabelle is so very far from safe in this world, but she is blessed beyond belief for how far she's come. We find ourselves taking more and more risks with the temperatures. We spent some time last summer in the heat and she did fairly well. We've been outside a few times when it's chilly out and her body shivers like it's supossed to. What a miracle to see. Your child shivering when she's cold is so natural but a reaction she never used to have. It let's me know her system is starting to function better. I want so badly to let my baby girl play in the snow this year, but we are scared.

Prayers for beautiful snowfall are coming from our home. The girls I guarantee will be wearing their jammies inside out and I will make sure we have our pantry well stocked with cocoa for hot chocolate. Everyone that is on the east coast and projected to be affected by this storm, I pray you will stay safe. Keep warm. Snuggle up with your love ones and find the magic in the snowfalling, despite the inconveniences it may cause. Watch your children, grandchildren, neighborhood children and even grown children run and play in the snow. 
Stay safe and warm friends!

Tuesday, February 10, 2015

Feeding Tube Awareness Week 2015

Oh the evolution our family has taken when it comes to tube feeding. Our feelings about a feeding tube in may ways are similar, we hate it. But the benefits this feeding tube has brought to our home, outweighs the burden by miles.

Feeding Tube Awareness Week is something special to our family. It's an opportunity for us to share with perfect strangers, what we have learned about feeding tubes. I once walked in those shoes, I didn't know what feeding tubes purpose was, as I explain in last years post, I believed tubes were only for those gravely ill. The reality is that feeding tubes are used for so many more reasons that I even knew!

Tubey's can truly (well, pretty much) do everything a person without a feeding tube can do. If you put a challenge in front of Annabelle, I can say for absolute certain, that a silly tube in her tummy is the LAST thing that will hold her back from getting her where she wishes to run. I didn't know any of that, so many people said that the tube will not hold us back but I didn't believe them. Of course it will hold us back! Look at all this equipment and maintenance! Look at how ugly and painful the tube is! It's holding us back from EVERYTHING! Or so I thought.

18 months later. I feel like we've moved mountains from where we started when it comes to tube feeding. It is still not a comfortable part of our life, just less than two weeks ago, I asked a doctor when we can get rid of the horrible thing. He shook his head and said "We wont even entertain that conversation.." but we have adapted. Believe it or not, AK and I have taken nights out and left Annabelle with family and friends (never more than a few hours, but still). Annabelle can hook up her own tube feeding and owns it confidently. The stoma has healed and very seldom do we have complications with the tube/stoma site at all. It stays clean, dry and as far as we can tell, she's comfortable!

Tubey's can really do anything other kiddos can do. In fact, in many ways, it's super special to be a tubey!

We have the cutest stickers we get to wear ON OUR FACE! ..

We can take baths just like anyone else.. 

We have the coolest IV Pole to decorate for every holiday!..

We get to ride in awesome expensive strollers..

We get fun gadgets to play with, bonus(!) it beeps constantly and always brings mom and dad running in a panic!

Dress-up is super fun and tubey's have endless ways of accessorizing..

Easter Egg Hunts are exciting, because after we cash in all the candy from the eggs, mommy and daddy give us an extra special surprise in exchange..

We have numerous backpacks, that even have extra room to stash a spare baby doll.. or two..

Cute belts cover our tubey so i can run and play just like other kiddos! I don't have to worry about getting hurt.. AND, it can even go in the pool! ..

I get to eat and sleep at the same time, who else can do that, really? ..

We get sick just like other kids. But we vomit thru our tube instead of our mouth, so we never get choked or have that yucky taste in our mouth. Aren't we lucky?! ..

We don't miss a family vacation! Just bring our tubey along..

We visit the pumpkin patch..

We are ALWAYS at our friends side when they need us. As they are always with us when it's our time to hold another tubey's hand during a difficult time.. Tubey - Buddies - for - Life! ..

We go to baseball games.. 

We get totally excited when new products come out. Like this one, a tubey that GLOWS IN THE DARK! How awesome is that!! ..

We read books in our room..

We dress up with our friends ..

We visit the zoo and get to accessorize with matching tubey covers..

We have safe, fun, very special birthday cakes .. 

We get to pose naked for pictures and people don't judge! ..

 When times are tough, we always have a sense of humor and accessorize appropriate.
 "When life gives you lemons. Accessorize" ..

Being a Tubey also has it's challenges. Not all are fun but the way to survive and enjoy the life of a tubey is to make the most of every difficult situation. Our family always finds the light, even when we feel like we are living in a dark cave all alone. Parenting a young tubey is difficult, especially when you cannot calm or explain to them why they are in pain....

Why we had to make a trip to the emergency room for yet another NG tube replacement (and the doctor wasn't nearly as gentle as mommy)..

Why her face is absolutely raw from the tape that is constantly across her sweet cheeks.. or why people stare every time we are in public..

Why mommy and daddy have to subject her to so much pain and put a hard tube in her nose that makes her bleed and hurts so badly.. why mommy and daddy hug and kiss her with tears in their own eyes after its finished.. 

Why mommy and daddy worry all night when she is sick but they do not know how to help her..

Why she was just in an operating room for over 4 hours and is in the most excruciating pain but no one will touch her and make it all better ..

Why her tubey continues to become infected and everything she touches and every time she moves, it hurts.. but again, mommy and daddy can't make the pain go away..

Why her sissy gets to come and go from the hospital but she's left all alone.. why her big sissy cries at night worried about her baby sister in the hospital in pain..

Why mommy has to hold her down and won't pick her up during CT scans

 Why this is her life.

Feeding Tube Awareness Week for our family is the opportunity to share with you the realities of our life living with a tubey. Of the reality of a tubey's life, living in this world. Not all things are horrible - the medical device of a feeding tube is not a death sentence or depiction of 'gravely ill', it is a means of providing nourishment to those that are unable to nourish themselves. Some kids cannot see, they wear glasses. Some kids cannot hear, they have hearing aids. Some kids cannot talk, they use sign language. Annabelle cannot eat - she has a feeding tube. Specifically a Gastrostomy Tube, aka G-Tube that is surgically placed into her stomach. We first started with a Nasogastric Tube, aka NG-Tube. That was a longer tube that was inserted thru her nose, down her esophagus and fed her into her stomach.

Feeding tubes come in all shapes, sizes, forms and means of providing nutrition in whichever way the person needs. Those with feeding tubes, those living with recipients of feeding tubes are truly a species of strength all on their own. Every road is paved with it's own potholes of struggles and curves; our bumpy road is built around a feeding tube. It isn't always a rainy/stormy drive, most times it is truly sunshines and rainbows. Especially when you look at the sky and recognize just how much the tube is nourishing your loved one. We are so grateful for our Tubey-Annabelle. We hate the device and why it is here. But we are blessed beyond measure for what it provides to our little girl.

Tuesday, February 3, 2015

Back on steroids

Annabelle is adjusting back to the meds and steroids well. So far she hasn't been overly agitated or angry, just hyper. Bedtime is still going well but if/when she wakes at night, she has a tough time getting back to sleep. She's fairly happy with all things considered. 

Her Gtube is scheduled to be changed soon. Our nurse offered to change her tube when another nurse from the nursing agency comes in for her monthly visit. Together they will change her tube out. I have so many mixed feelings. My stomach doesn't settle well knowing my baby will have ANYTHING medical performed on her while I'm not next to her. While my mind should be at rest that she's in good hands and at least I won't have to watch, that just isn't my nature. I am a hands on mommy, I am involved with EVERYTHING when it comes to this kids care. But I also have another kiddo at home, I have a full time job and other responsibilities. Annabelle is in excellent hands with our nurse. I need to remember that I cannot always be there for everything and I need to pick my battles for when she truly needs me next to her. Ugh. Still. It's hard. 

Her gtube site (stoma). Believe it or not is actually continuing to do so well. We keep it extremely clean. She gets at least one bath a day and multiple cleanses around the tube. I don't know if it's the different style of tubes that we've been using lately (lower profile) or just the time in which her body needed to heal. But either way, it looks wonderful. She does have a few scars around the site from granulation tissue but nothing outstanding. 

Meanwhile. I am pushing full steam ahead towards getting annabelle into another hospital. She's doing so well,  it we have no idea how far luck will carry us.

Sunday, January 25, 2015

The Perfect Compromise

Dare I say it? We had a great appointment this week. They did not share great news with us. Annabelle is still actively battling a relapse of EoE. Our trial for wheat and chicken was failed. But, we met with a team of knowledgeable doctors and talked as adults and caregivers of a child, a person - we decided the best game plan for Annabelle – together. Finding the blessing in a painful situation, we consider a win.

Annabelle did wonderful for the appointment. We waited nearly two hours before a doctor came to speak with us. The afternoon was long, everyone was cranky and hungry (and nervous), but we all made it out with no tears. When the doctor came in our room, Annabelle immediately asked if he was going to poke her. I promised there would be no pokes (needles) today. Once that was clear, she was relaxed and chatty. She showed the doctor her tubey, took a deep breath and explained that she was 3 AND A HALF and her sissy was 5 AND A HALF (This is quite a thing.. the ½ ages that is.)

Of course the conversation began with my pregnancy, leading to her first signs of FTT, then diagnosis and all the issues in between. Once we landed at current-day, we engaged the other two doctors in the room. Both the GI and Immunology doctor shared their expertise with us on the management of Eosinophilic Esophaghitis and we asked multiple questions. Their primary focus was to distinguish the cause of relapse and to clear her GI system of Eosinophils before they do more damage than they’ve already done. My primary focus was two-sided, I wanted to fight to keep her foods and I wanted to fight against more drugs.

Finally came the truest question. The doctor sat down in a chair and looked dead at AK and I both. He closed his notebook and folded his hands in his lap; “What do you want for Annabelle. What do YOU want to do as her parents?” Obviously he cannot give us a true diagnosis for our baby. He cannot make this unfair life sentence of hers go away. He cannot rid her small body of an uncontrolled auto-immune disease. But he had the compassion to ask us, what is it that we prioritize the most in our parenting of this little girl. We cannot have it all, but if we had to choose one thing that we wish for, what would it be.

We looked at one another and didn’t really know how to respond. I swallowed back all the emotions going thru my head. I exhaled deeply over every single flash back that ran thru my memory: tears, Annabelle tears, begging for help, NG tube changes, bandage changes, burning granulation tissue off her stomach, handing her over to surgeons, pacing waiting rooms, brain scans, emergency room frustrations, mady asking me if her baby sister was going to die and go to heaven, myself sitting in church with tears pouring off my face countless Sunday’s, my pleas, medical bills, seizures, swollen eyes from a confused baby crying hours on end, EEG, baby straight jackets, home covered in medical supply, feeding schedules, pharmacy trips, IVs, more surgeries, unknown fears, AKs tears, pacing our home for hours on end, faking the smiles, lying about the worst, living bitter, missing milestones, traveling hours for hospitals, floods of abnormal labs … … … and then I looked down at my daughter. She’s sitting next to me snacking on strawberries and watching a movie. She's happy.

Quality of Life
If there is nothing else in this world we want for our daughter, it’s the best quality of life. We have spent years trying to heal her body, find answers and performing medical treatments that doctors have promised would give her the best help in the long run. All the while, we’ve stripped her from her own quality of life. We’ve subjected her to more painful tests and procedures, we’ve forgotten to allow her to be a toddler. I don’t even remember her first steps or first words because I spent all my time researching, paying bills and driving her to another hospital. Our daughter has sat at a table and watched everyone in the world eat meals without her. She’s isolated from everything she enjoys at the expense of this disease. We want the best quality of life we can provide, safely. 

In the past 6 weeks, Annabelle has grown. She has absolutely EXPLODED in personality and strength. Not to mention, her bone structure has grown in height, she’s gained almost 4 pounds (4 POUNDS!!!!!!), her hair is growing for the first time and she’s resting. She’s laughing. She’s sleeping at night, napping during the day. She can run around the house without collapsing. She can probably join us for a walk around the neighborhood for the first time in her life. Before December, she couldn’t walk 4 houses to the end of our street without tiring. Annabelle’s color and skin looks and feels healthy. She’s eating and content. Our instincts are telling us that he credit goes to the foods now in her diet. Annabelle’s never had protein in her life, she’s never had wheat before now. The combination of those two foods plus the fruits and veggies she can eat – she is thriving better than I ever could have prayed she would. This is the quality of life we wish for our daughter. That is the ‘normalcy’ we want to retain.

The doctors agreed with us whole-heartedly. They explained that while we do not know what is happening to Annabelle’s little body on the inside, we don’t know exactly what her true diagnosis is, but making her time here as comfortable and normal is possible should continue to remain our top priority as we move on in her care. He agreed to work with us to decide what that would be and as a group, we all decided Annabelle’s treatment plan.

For the next 90 days. Annabelle will continue to eat chicken, wheat, fruits, veggies and coconut milk. We cannot lower her around the clock tube feedings of Elecare, but we are not removing any foods from her diet either. (Nor are we adding any of course). We will unfortunately, be adding more drugs back into her diet. She will go back on steroids, now twice x day, remain on singulair granules, omeprazole and mineral oil. This wasn’t a terrible compromise. I hate that we are back on steroids. For so many reasons, I HATE steroids. Their long term affects are terrifying, not to mention the immediate side effects (hello crazy roid-rage baby again) but it’s a compromise. We get to keep foods that we know are nourishing her body.

In three months we will perform another endoscopy and round of biopsys to determine if the medication is working as intended. If it hasn’t cleared the active eosinophils within 90days, Annabelle will have to come off foods and back to 100% tube feedings with drugs. Our prayers are for the meds doing what they’re made to do and us to have clear biopsys’s in a few months. In the meantime, we continue to fight for answers!

As the appointment wrapped up, I asked the doctors, in their experience, what was the possibility of ever coming off Elecare and tube feedings. The answer was grim, vague and he told me not to focus down that road at all. Many people will never come off those feedings and we are nowhere close to having those conversations. My gut told me the same answer, but I wanted to hear an expert opinion. We asked the doctors many questions around Eosinophilic Esophaghitis and it’s relation to children with other diagnosis – his answer was again, vague and grim. Their best advice was to continue the road we are on. Do NOT stop fighting for an answer for Belle, she desperately needs a diagnosis before more is damaged beyond our control, but to keep her quality of life in perspective and never lose focus. We are not promised tomorrow, make the best of every single day we’re given – fight but remember to laugh and breathe.

We left the hospital late that night, around 630pm with labwork to complete. Our minds were racing but our hearts were content. Annabelle was happy and in a great mood. I never explained to her what happened or why we were there. I never threatened her with the potential to not be able to eat bread and chicken anymore so she didn’t have that overlying fear about the appointment. We simply went home and enjoyed dinner as usual. 

Madelynne was very curious as to why we were at the hospital so late at night. She wanted to know if the boo-boo’s were still in her sissy’s tummy and I told her yes. She wanted to know if she would have to stop eating all food again and we explained to her that mommy and daddy talked to the doctors about that. We explained that, “we told them just how much Annabelle loves to eat her chicken and dinner with the family, how much Annabelle is growing and how happy she is now. They told us that she can keep eating if she starts to take a new medicine. The medicine will make her a little more cranky and upset at times, but it will help the boo-boo’s. You’ll help her when she gets frustrated, right?”
Madelynne understood very well and Annabelle was clueless to our conversation. The night was wrapped up quickly as everyone headed to bed. I called our doctor and talked to her for a long time over what happened that day, we were both pleased and discussed our game plans together. The night was late and AK and I were exhausted.
We said our prayers, onward to a new day. 
Finally, a battle won.

Wednesday, January 21, 2015

The call came late last night. Biopsy's indeed confirmed what our doctor was visually seeing during the Endoscopy. Annabelle Eosinophil counts were 45x hpf, they're not the worst we've ever seen, but they're pretty close. The dangers of this scope are that we have only trialed for about 6 weeks, and NOT heavily. The amount of trial foods she eats have NOT been the majority of her diet, she's had them for a handful of weeks and were already seeing the disease actively respond.

The good part in this however, is that the top and middle parts of her esophagus were not nearly as affected as the bottom. This is a pretty good indicator that food is the culprit to this relapse vs something airborne.