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?
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"
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.