13 Days w/o a BM.

Admission was seamless. Annabelle was very calm about this hospital visit and inpatient stay. She had very little anxiety about the doctors and hospital, this is so heartwarming and heartbreaking for us. She was chipper to the nursing staff and settled in her room comfortably. Climbed into her bed where she would spend the next days, adjusted the recline and grabbed for her Kindle to watch cartoons. It was like she knew the routine all too well... my heart sank but I was able to exhale a sigh of relief. This is far from our usual routine where I carry her thru the doors in silence, she clings to me like a monkey and pleads with tears in her eyes to go home. I guess she has finally realized that going home isn't an option when mommy brings her to the hospital, so we might as well get comfy while we're here.

Annabelle asked if the nurse was going to poke her. I said "Yes sweety. She IS going to 'poke' you (that's how we refer to needles), but I promise it will not take long. She will do her best to be very gentle. Can you do your best to be very brave so it will be all done super duper fast?" Bless her heart, she said "I don't know mommy, but i'll try."

The nurse was BEYOND wonderful. She spoke to Annabelle on the same level as I do. No sugar-coating or lies. She explained what was going to happen, step by step, she even went further than I would have but I think it was a good thing. It was an appropriate level for Annabelle to understand and I think it made the anxiety even less stressful that it was. I choose the best site for the nurse to place Annabelle's IV. There is a great vein in her left hand that I prefer they only use for IV's.. blood draws, we go for other areas, but for an IV - I prefer to keep her left hand unharmed and healthy for those. The nurse told Annabelle everything she was going, including wiping her hand with cold alcohol to make sure there are no germs - then next she pulled the needle and Annabelle whimpered. The nurse showed her what it looked like and then pointed to where she was going to put it. She counted to 3 and didn't lie about when the stick would come. Annabelle squeezed my hand and didn't look. She moaned one time "ohhh mommy!" with the saddest eyes, but a tear never fell. Annabelle looked around the room cringing thru the pain as the nurse struggled to secure the IV placement (the vein kept moving away from her).. Belle did such a wonderful job. Once it was in place, the nurse told her to look. Annabelle was very proud of herself once she saw what had just happened and she didn't cry or pull away. I was in absolute awe of her bravery.

After her IV was placed and they began fluids, we discussed the plan for administering the GoLytely. We would deliver the liquid via g-tube, starting at a rate of no higher than 150ml / hr. I typically run her continuous feeds at 40ml/hr because her stomach doesn't empty fast enough to run at a higher rate. The nurse wanted to begin at 300ml/hr and I said "Absolutely not". Annabelle would be wretching and trying to vomit in no time. If she begins that violent process, we will be in trouble. By this time, more doctors were doing their assessments on Belle. The god-awful smell from her breath and coughing / choking was confirmed as stool that was backed up into her stomach. The leaking discharge from her gtube was also backed up stool. I wanted relief for Annabelle as soon as possible, as quickly as we could - we began the feeds. Began the IV fluids and manned our positions to begin the evening of a poop-marathon. We were far from wrong.

I began vomiting shortly after midnight. The virus Madelynne was fighting at home was apparently shared with me. I spent the rest of the night calming Annabelle to get back to sleep between vital checks & blood draws as I vomited every 20 minutes around the clock. By 5am, Annabelle had been receiving the medications for 8 hours. She still had not even the first sound of a rumbly-tummy.

9am.
13 Days since her last BM
24 hrs since she last peed
12 hrs since beginning the bowel cleanse that should have taken affect within 3-4hrs.


We still had nothing.

Annabelle was swollen everywhere, her face was hard as a rock and her skin as tight as can be. Her face, hands, fingers and toes were painfully swollen. She was pleading for something to eat and broke down in tears each time we dismissed her request. She was so hungry.. I snuck her ice chips when the nurses weren't looking and let a tear fall each time I hid myself in the bathroom vomiting and broken hearted that I couldn't do more for my baby.

At hour 14, I spoke to her doctors about concerns whether or not a large stool would do damage and rupture her internally - they were all clueless. None of us had answers as to what was going to happen but we were all equally worried and fearful the result was going to be painful for her.. We decided to bolus Annabelle more fluids because she still was not urinating. Her diaper had been dry for two days. Something had to give.

Finally, after 15 hours - Annabelle had her first BM in almost two weeks. It was pure liquid, and we couldn't have been more grateful for it. Both her personal nurse that had been with us all day, and the hospital nurse quickly moved into action to help clean Annabelle up. Each time that I tried to step up and help, I would vomit again. I am certainly not scared of poop, but for someone that has spent the last 10hrs vomiting, anything and everything was able to instigate another bout. I felt so helpless to everyone, especially Annabelle. After her shower, we had to rearrange her IV. Annabelle cried with tears begging for me to home her and make it stop, I couldn't touch my daughter because I was too scared I would get her sick. It was in that moment that I knew I wasn't doing anyone good in the hospital. Annabelle needed me, but not as badly as I needed her. She needed me well and I couldn't do ANYthing for her. Fortunately, we have the best nurse in the world that loves her to pieces - I collected my things and left my baby in the hospital. For the first time, ever, I left her with someone else. Someone I trust more than anything - but it was still hard.

I called AK and told him that I needed to come home and he can head up there. I would be home with Mady and he could be with Annabelle, we could switch. Fortunately, he didn't listen at all and he called his own mother to come nurse BOTH Madelynne and I for the day.

 

Over the next 4 hours, Annabelle only had two more BMs. The doctors expectation for her was significantly higher. They decided to bump her feed rate of the bowel cleanse from 150ml/hr to 400ml/hr!!!! It was obvious Annabelle was not progressing as she should and her GI system is not functioning properly by any means. It took several more hours and things finally began to move again. Annabelle was allowed a popsicle and got a visit from the hospital doggie in her room. Two things that made her more happy than anything. (well, chicken probably would have made her really happy).


By Tuesday, Annabelle was finally home. Mady was feeling much better. I was slowly recovering and Annabelle, albeit weak and extremely tired - she was home and grateful to be there. Her bowels are still moving terribly slow, she has very very little appetite and is quite clumsy because she is so weak but I know she will turn around soon.

We just need to make it a few more months. Annabelle just needs to hold on a little longer so we can find her the answers she needs.

She made it thru this battle, she's made it thru so many - she will make it thru the rest.

Packing for the hospital

Friday night seemed so promising. Just as AK and I were about to hit our wall, Annabelle finally began to have a BM, at least I thought she did. She passed a bit of fluid, extremely dark, almost black and again, did not smell anything like stool. It smelled like pure ammonia. We were hopeful this was a start though, Mady came running from her room with excitement "Good job Annabelle! You did it!". Annabelle was so proud of herself while I changed her diaper, "Can I eat mommy? Can I have chicken now?" She was so hungry. We didn't give her anything solid, but we did give her a cup of formula/medical food. Afterall, she certainly had not gotten everything 'out' so I didn't want to push the solids too quickly.

Saturday morning, still nothing more. AK took both girls to chick-fil-a and made good on his promise to her - Annabelle didn't miss a bite of that chicken. She was starving. The girls enjoyed themselves and we spent the rest of the rainy afternoon on poop watch. Nothing.

Today, Sunday, I woke with a heavy heart. What is wrong with my baby girl? Clearly she's miserable yet she's so strong and positive.
She is becoming weak and lethargic.
Her color is so pale - her skin is beginning to turn yellow.

Our friend came over this morning while Mady went to church (I couldn't convince myself to take Annabelle.. bc goodness knows she would begin the poop-a-thon in the nursery with another poor unfortunate soul!) Our friend, Amber, takes our families pictures and I asked that she take some fun pictures of Annabelle that we can use for our big surprise coming soon. Annabelle was a ball of energy and smiles. She is our little super hero and she loves the camera.

Soon after Amber left, Annabelle slid downhill. She has not had much of an appetite today - we aren't able to feed her much in general, but what we are offering, she has little interest in eating.

She's becoming terribly weak. I took Mady to her dance rehearsal while Annabelle stayed home sleeping. She's been asleep for over 4 hours now. I went into her room to grab some things to pack and she didn't roll over. It's times like these that terrify me the most. I want to shake and pick her up so I know she will open her eyes, but I won't. I will be waking her soon enough... when I go to tell her the bad news :( She is going to be heartbroken when I tell her we have to go to the hospital.

I called the GI at 4pm. We are now on Day 12 of no true BM. Day 4 of barely any solids. The doctor immediately instructed that she be admitted. I am packing our bags and the hospital will call when her bed is prepared and tell us where to report.

I have no idea what is wrong with my baby. I don't know why her GI system has begun to fail so suddenly and worst of all, we have no idea how to help her. Annabelle is so tough, but this life and her poor body is so unfair. Please, please keep her in your thoughts and prayers as you continue on this beautiful Sunday afternoon. I will keep you updated once Annabelle is settled in the hospital.

Quite the crappy conversation. Literally.

Our GI called me back and within minutes of discussing Annabelle's situation, she asked that I bring her in immediately. I called our nurse to let her know the plans and sweet Annabelle, at 1030am was still in my bed. Our nurse had everything packed for us by the time I walked thru the door. Annabelle was laying down, with little color or energy, but happy and content to watch Netflix.I told her we were going to the doctors and she immediately pleaded not to go. She didn't want to get dressed and couldn't walk. I carried her to the car and we sang and talked all the way to the office.

She was pitiful in the backseat. Trying so hard not to fall asleep. Half way to the doctors, she began wretching/dry-heaving again. Driving on the interstate, there isn't anything I could do! I knew she wouldn't vomit, there wasn't anything on her stomach :( I was helpless. The wretching stopped quickly, but within 10min it began again. As quickly as I could, we made it to the doctors office where I scooped Annabelle's limp body from her carseat. She was utterly exhausted as I carried her inside.

Standing to get her weight, she stumbled, standing to measure her height, she nearly fell until I caught her - the nurse told me, "Mom, this is enough - carry her back to the room, I'm getting the doctor".

We quickly discussed Annabelle's most recent history with the bowel issues and she felt around her tummy. The doctor did a few procedures that were quite uncomfortable for Annabelle but necessary to determine if she were impacted and how badly, before we went for Xrays. Annabelle looked at me with the saddest eyes "You said it won't hurt today mommy. You a mean mommy!"


Xray took much longer than normal and I pleaded with Annabelle constantly, "Do you need to go potty sweety? It's right here." The answer was always the same. No mommy, no pee-pee or poop. I don't have to go.

She was brave for the xray. She was too lethargic to wiggle and move around.

We headed back to the doctors office and sat down to review the xray. The stool was clearly visible everywhere in her large and small intestines, but not in the bottom portion of her large intestine/colon where it needs to be in order for Annabelle to feel the urge to have a BM. This explains why the enemas have been unsuccessful. We needed to know where things were stopped in order to determine the best action plan to get things moving.

The action plan is discouraging, to say the least. The doctor is under the impression Annabelle is "holding" her stool bc she is scared it will hurt to have a BM. And logically speaking, this could absolutely be true that Annabelle is scared and may hold it. But from the images on the xray - Annabelle doesn't even have that option of holding it, the stool isn't nearly low enough for her to feel it!

The doctor gave us multiple suggestions from a potty training standpoint and I was visibly annoyed by what she was telling us. Our nurse and I work with Annabelle day in and day out - this has never been a problem before, and suddenly the child is going 10 DAYS NOW, without a BM. And she's agreeing that the stool isn't even low yet. How in the WORLD can that be a fault on my potty training or Annabelle to blame? How in the WORLD is this not a huge concern?

The concern was present and well communicated from the doctor. We need to see progress very soon from Annabelle, but just how to do that is difficult to determine - especially considering we are trying everything already.

She finalized the action plan. It involves 4 new prescriptions (here we go with the damn drugs again.. that makes, what? A million drugs my child takes now?). Those will each be administered in a strategic fashion. In addition to the drugs, I will continue to push lots of fluids and we will remove ALL foods and solids from her diet immediately.

All foods and solids? I stopped her immediately and disagreed, "no, im sorry, I cannot do that. the last time Annabelle went without food, it became life-threatening within hours. Because of her liver function, she must have a balanced protein intake and if we remove all foods AND tube feedings, she will quickly move into Metabolic Acidosis. We've seen her poor body do this numerous times in the past, and after a year - we've finally managed to avoid that critical state by managing her diet very carefully. If we stop feeding her, it will have soo many repercussions. The doctor talked louder, faster and over everything I was saying. She debated "Ok. feed her 1/4 her formula and 3/4 pedialyte". This isn't even a negotiation I was stable enough to have with a doctor. She should know better as to what I was saying. A mother knows their child best, how is it that doctors forget that so often? Annabelle is a mystery and ALL her doctors agree with that, so how do you not listen to her parent and nurse to determine the safest plan of care for this baby?

I left the office, discouraged, furious and absolutely terrified of what the next hours would hold for my daughter.

On the drive home, Annabelle continued to try to vomit, this persisted the entire hour drive home until she finally fell asleep / passed out from sheer exhaustion.  

As I got off the exit heading towards the pharmacy near our house, I got a call from CVS.

CVS: Hi, may I speak to the parent of Annabelle Bishop?
Me: Speaking.
CVS: You have 4 prescriptions that were just called in for Annabelle, is that correct?
Me: Yes mam, I will be there in about 5 minutes to pick them up, are they already finished?
CVS: Well actually, I've run both your primary and secondary insurance, but unfortunately 3 of the 4 prescriptions are not covered by either insurance. Do you still want all of them?
Me: Well that figures.. im sorry mam, this is just a difficult day. How much are they total?
CVS: The omeprazole is $223.. The cenna is $140........
Me: That's ok. I can't do this today. Is there anything OTC that I can give to replace the prescriptions that are not covered?
CVS: No mam, there is nothing OTC that you could substitute. Your best bet is to call your doctor and see if she has any suggestions. So do you not want these?
Me: Cancel the order. I appreciate the phone call, have a good day.

Annabelle was as weak as I was defeated by the time we both walked in the door. I hadn't eaten all day and knew I couldn't eat in front of Annabelle because she hadn't eaten since the day prior! I tucked her in snug to my bed with cartoons and then ate a handful of peanuts as fast as I could while hiding in the pantry in case she came downstairs. Tears started pouring off my chin before I could walk out of the pantry... why does this happen to my baby? This isn't fair at all! Here we are again - I can't feed my child and we are forced to sit back and just WAIT. Not feed her, knowing well that at any moment her body will begin to go into shock, knowing she is on the cusp of seizures all over again.. all because her GI system is being attacked by a god-awful disease that no one freaking understands!!! The frustration alone is enough to eat us alive.

I wiped my tears and went upstairs to wash my face and crawl in the bed beside my mini-hero. She was pitiful but so sweet.

"I love you baby girl. You're really strong, you know that?
-" I love you too mom. You strong too. We both strong... we have big muscles"
"That's right!!"

I text AK and told him that he needed to come home. We were headed downhill again and his kiddo needed her favorite person in the world.Annabelle is a daddy's girl top to bottom and I knew he would be able to make her smile. We both took a nap before it was time to go get Madelynne from school. After Mady was home, Annabelle perked up a bit. She played with her sissy and we all sat in the floor and played a card game of "War" that Mady taught us. I was so relieved to see Annabelle feeling better and with more energy... how she got that energy, I don't know, but she was smiling with her big sister, and that's all that matters.

The night wrapped up quickly. All unsuccessful attempts with our cocktail of meds to get her bowels to begin moving. Annabelle cried during dinner time because she was so hungry and we wouldn't allow her anything to eat. I crushed a pedialyte popsicle in a bowl and she ate it with a spoon. That was the best we could offer and I died inside. She was grateful for the popsicle, but persistently asked for chicken. Bless her heart.

She fell asleep quickly without a peep. She slept all night. AK was finally home, She had her daddy. I prayed for half an hour before falling asleep.. I prayed so hard her bowels would start moving during the night.
Nothing. :(

9 Days is too long

We are at Day 9 without a BM.

Annabelle's esophagus is covered with excruciating eosinophils, her stomach is ridden of gastritis, her feeding tube site is leaking and bleeding but none of those issues are our primary concern. Annabelle's lower GI system is failing faster and faster and our worry is escalating at the same speed. 

She's taking all her daily medications, in addition to the meds for her bowels. Over the last three days, her nurse and I have aggressively attempted to get the stool moving without any luck.

In addition to mineral oil, Miralax, stool softners and lots of fluids, two days ago we have her 4 laxatives followed by more Miralax. Nothing all day.

Yesterday she had more laxatives, milk of magnesia and finally 3/4 of an adult Fleet enema. She passed the smallest amount of stool and the fluid from the enema.
Hours later, nothing. 

The only BM she had last night was the liquid from the enema, with a strong - ammonia/vinegar-almost, odor to it. When I say strong, I mean strong! And strong that smells nothing like stool. I'm a mom, poop is second nature to me by now, but this isn't right. Something is very wrong. 

When my mommy radar goes off, I dive in like a hawk and just watch.. Absorb and try to read this beautiful mystery of a child I have.. I kept her close & Annabelle slept in the bed with me last night.  She snuggles up so close, my heart could burst with love for this sweet girl. 

Annabelle tossed and turned a lot during the night, but no BM. At 3:40am I woke from a dead sleep to my angel wretching/dry-heaving beside me. There is no rebound as fast as my feet hitting the floor and darting for the medical supplies. I needed to allow her stomach to relieve the pressure before she tears her esophagus and stomach open from her nissen. Annabelle was calm, half asleep and trying to breathe between wretching. She pulled her Jammies up as I turned on the light, so I could hook her Tubey up. 

The moment the 60cc syringe was opened, I kid you not, the built-up pressure from her stomach exploded from the tubing so loud and fast, the gastric fluid hit my ceiling, CEILING! Then next the wall and bed. Annabelle immediately exhaled a sigh of relief. There wasn't much on her stomach beside a small amount of her feed and some fluids I had given at 2am. Her stomach contained mostly bile, but contained so much gas. The smell from her stomach relieving pressure thru the tubing was almost as vile as the BM! After Annabelle calmed down, I allowed her to have some small sips of juice and she quickly fell back asleep. I proceeded to clean the ceiling and walls at 4am.

4:05am she began wretching again. This process went on about every 15-20min until 5:30am.

Annabelle is exhausted from her long night. As am I - neither of us can wait for daddy to finally get home. He's been traveling out of town for three weeks now! We are beat.

I've left a message for the GI doctor here in Richmond. We are out of all our options at home with Annabelle. I am almost certain the wretching/vomiting during the night is a reflection from being so full and unable to pass any stool.

Please pray for my little girl. I will keep you updated.

"Why did Jesus make me sick?"

Were a Christian family. Madelynne has been raised in a private Christian school since 2yo. We read our children's bible before bed each night and talk about its stories. We need faith in our lives, we need to trust someone bigger than here on earth and I want my girls to love and follow Jesus and his message.

Annabelle: "why did Jesus put the boo-boo's inside me and make me sick?"

The words I have feared for so long. The question I can't answer - the question I want to know the answer to!! 

Annabelle is becoming so wise and curious about the world around her. The only blessing from being sick all her life, is that she has grown to learn this is her normal. She doesn't know anything different from the pain, hospitals, doctors appointments and segregation from others. But she is beginning to recognize that she is different. She wants to go to school like her sissy but she blames her tubey for not being able to go. The tubes limit Annabelle to a lot of things - anything that can injure or snag the tube, she cannot do. When she's being fed and wearing a backpack, her limitations aren't as bad as I feared they would be. But they are still present. 

The invisible disease though is the worst of all. The invisible fears, thoughts, isolation is ruining our families heart and minds. 

Mady went thru a spell where she would tell us Jesus would visit her at night when she was scared, and tell her that he was taking care of her sissy. Mady and Annabelle shared a room during the times she was critically ill, she told us Angels stayed in the room all the time for Annabelle and that they're really nice. 

We are a Christian family, and thank goodness our children have something to carry them thru this journey - but it's hard. 

Me: did you have a lot of fun in church this morning Annabelle? 

A: yes! Jesus takes care of us and loves us!

Me: that's right, he is always watching over you and loving you. 

A: mommy, why did Jesus put the boo-boo's in my tummy?

Me: I don't know why you have boo-boos sweety, Jesus did not put them there to make you sick. 

A: yes he did. Jesus made me. I don't think he loves me. He loves other boys and girls. 

She was bubbly and content to have this conversation while we waited for daddy and Mady. She has no idea the impact of those words and how close they are to our fears for her. Everyday we learn to navigate this life, some days we just have more questions than others. We drove home in silence.


The weekend was spent with two girls that weren't feeling well. We missed a bridal shower and baby shower because of the girls - but we found grace in the sunshine. We spent so much time outside this weekend. We danced in the grass. The girls colored our driveway in sidewalk chalk. They laughed and played hide-n-seek. We enjoyed afternoon naps with the windows open. I watched Annabelle from a distance and found myself in absolute awe of her courage. I watched Mady protecting her sister and keeping close tabs on her when they would walk up steps. The music was on and dinner was on the grill. Our girls were laughing. Between the tears and frustrations when Annabelle's pain would worsen, they were laughing and playing.

"When doubts filled my mind, your comfort gave me renewed hope and cheer." -Psalms 94.19

While we do not have the answers for everything we wish we did, and while we cannot help alleviate our families worry... we always find the light, the hope and comfort - for our family, that comes in the sound of laughter in the backyard.

Holding our breath

Were holding our breath and just waiting.. We're praying that we can keep Annabellr stable and make her as comfortable as we can until we get her into our promise land.. Aka specialty hospital. 

I know this topic is becoming so tiresome, trust me, it is for us too.. Her bowels are in terrible shape. This past week she went 7 days without a BM even while taking floods of medications, milk of magnesia, chewable laxatives and fleet enemas. Nothing works. Tuesday night became a marathon of excruciating pain for Annabelle. I am shocked you couldn't hear her screams from your house as she finally started passing stool along with floods of blood from tearing so badly. The trauma lasted two hours and each time she passed even the tinest amount, the pain would take her breath away as fast as she jumped and screamed. She was so exhausted.. I was exhausted with her and didn't know what to do to help. She begged me for hours to help her, she pleases me to make it all stop and all I could do was watch her struggle. 

I've spoken with our doctor this week and her best guess is that we're looking at either Chron's or ulcerative colitis. We both prefer to have the specialist make these decisions when they perform her tests and biopsys there.. We just don't know how long it's going to take to get admitted :(

The seasonal allergies are kicking her butt. I am almost certain it's set off her eoe but there's no way to confirm that guess. She's coughing badly, choking on everything and tells me the booboo's in her tummy make the food get stuck. I don't know what that translates to for a 3yo but it sure makes us nervous.

Her energy levels are about the same. She tires quickly if she runs around.. She's powerless against the cold or fluctuating temperatures. Her appetite is also depleting dangerously- this is a direct reflection to the constipation. 

.