Annabelle fell asleep shortly after 4am.
5:15amShe woke up having the first of her usual, many spells, choking. The nurse was in the room at the time she woke up and was able to watch the episode. Annabelle was hysterical. She was disoriented but also in a lot of pain. She was screaming, coughing, choking and finally vomited. Shortly later she fell back asleep and I told the nurse that it would continue to happen - so stay close.
6a Vitals. Annabelle woke up.
6:20a Another nurse came in to do another round of vitals and woke her up again, but then realized she was in the wrong room and left. How nice.
7am
Annabelle wasn't feeling well, she wouldn't eat, she couldn't get comfortable so I tried to get her to lay down with me... unsuccessfully.
7:30a
Breakfast was delivered.
8am
Shift change and nurses were in and out.
9am
I finally got Annabelle to fall asleep on my make-shift bed on the floor. Andi brought me a much needed Venti from Starbucks and we chatted while Annabelle slept.
Soon after a different nurse came into the room to give Annabelle meds. I asked which ones and she listed off 4 - 1 of them was NOT a medication Annabelle takes, and the other was a different form of a med we use at home. The medication that was on her list was a blood pressure medication and the nurse gasped and said "Oh gosh! Good catch mom!" (??? Really?!!) I explained to the nurse about the 'apnea?' episode that Ive been observing, and that this was new to me and she said "Yea, that's common with reflux children. No worries."
An hour later a respiratory therapist came in to begin a Pulmicort nebulizer treatment. I questioned why they wanted to do that and he explained to me that it's part of her medication to have a Pulmicort treatment twice a day. No! She has a Pulmicort slurry 2x a day. Liquid Pulmicort + 5 packets of splenda = Injected onto her throat to coat her esophagus. He wasn't aware that this was how Annabelle was taking the pulmicort and apologized for the confusion. He left.
2pm
I began trying to get Annabelle to take a nap. She was exhausted, tired, I couldn't get her to eat to save my life, she wasn't having any wet diapers and she was in general just not feeling well. Around the time I began trying to get her to lay down - she began having cold sweats. She was soaked from head to toe, wet but not running a fever. I just knew she was miserable, but I was starting to feel completely overlooked in the hospital.. Annabelle fell asleep after an hour and shortly later a nurse came in. I explained the cold sweats and that she wasn't feeling well again. She wouldn't eat no matter how hard we tried and we still haven't gotten a wet diaper. The nurse laid her hand on Annabelle's forehead and said "She doesn't have a temp mom, it's ok." and left. At this point I knew we heading downhill with the lack of care. My guard was going up, and fast.
The day continued in St. Mary's. My patience was beginning to run thin and my daughter was continuing to decline. I felt so helpless and absolutely exhausted over the week's roller coaster. I was also getting pissed, to put it politely.
3pm
A nurse came to our room to tell us that she was putting a sign on Annabelle's door and asked what her favorite character was.. to dress up the door a bit. I looked at AK and said "Are you kidding me? Is this really the pace that were moving?! We will never leave if we're JUST getting a sign on the door!"
4pm
Our pediatrician called my cell to ask how the day went.
Me: It hasn't really. We still haven't seen a doctor.
Ped: What about the Endocrinologist? What did they say?
Me: I haven't seen an Endocrinologist ..
Ped: Go to the charge nurse immediately and find out what's going on! They were supposed to see you already today! What about the GI? Have they not been by?
Me: No! Absolutely no one has come into our room all day today to see Annabelle.
As soon as I hung up the phone, our nurse came in to give us another pathetic "the doctor will be in soon, Im so sorry". I asked her why the Endo hasn't been by and she informed me that the doctor on the floor told them it wasn't necessary. My jaw dropped. Excuse me? How is that her call when she hasn't even seen my daughter yet? I will not leave this hospital until she's seen by Endocrinology, you can communicate that back to the doctor before she decides to ever pay us a visit tonight. I am not happy by what's going on - my child needs to be seen, yesterday!
I started pacing the room after she walked out and began to let into poor AK about how ridiculous this day has been and how upset I was getting. He shared my frustration and we both began to feel helpless. Annabelle at this point was feeling miserable. She was very whiny, didn't want to be held but cried when you put her down. She had been in this room all day and wasn't happy about it. She was emotional about every little thing ... the poor kid was just as much of a basket case as I was beginning to be!
5:15pm
The doctor finally walked into the room with two other nurses. The first thing she said was this: "Please know that we are all parents in here and we've all over-reacted at some point or another." My eyes grew to the size of quarters as I sat in the chair looking up at this woman stare down at me and begin to run off her 20min spiel about how much she knew and how irrational I was to bring Annabelle to the hospital over a simple reflux episode. AK kept looking at me with deep breaths, just knowing that I was on the verge of losing my mind. Here are some of our battling points between one another (Doctor and Myself/AK)
- How is it possible or even NORMAL to have a fluctuating temperature from 104.5 to 94.9 within hours of one another. And then when she finally resumes a normal temperature, she begins and entire day soaking wet of cold sweats? How is that normal.
Doctor: It's probably just a virus. There are so many viruses going around and there's noway to tell which one should could have had. She could have also had an infection but we've made sure she doesn't have an ear infection, UTI.. and didn't your pediatrician do a strep test? She doesn't a temperature right now, so what's the concern?
My Thoughts: She's soaked of cold sweats right now! We have no idea if it IS an infection because she hasn't had the first blood work run - she hasn't given a drop of blood while we've been there. They haven't done ANYthing since we were in the ER. Annabelle has an auto-immune disease and something is clearly causing her body to react this way. There is nothing normal about a fluctuating of a temperature like that, I'm not a doctor, but that cannot be normal. We haven't tested for a virus and we haven't run any tests to look for an infection, how can we disregard this?
- My child wakes up every single night screaming. She's hysterical and in so much pain that is only progressing. This has been escalating to the point we are at now. It begins every night a couple hours after she goes to sleep and lasts all night, we have her on so many medications that should be resolving this if it were 'reflux' and nothing is helping. Something is choking her to the point of coughing until she vomits, this whole ordeal is painful and isn't getting better, it's been steadily declining.
Doctor: I talked to your GI at CHKD, he informed me that her 'Eosinophilic Esophagitis' is in remission and without flares at this point. He gave you a prescription on Monday when you called and you've chosen not to give it to her, if you try that you may find you can give your daughter the relief you are looking for.
Annabelle's GI in Norfolk, while I love him and he takes great care of her - the last time he actually saw Annabelle was over three weeks ago and she was unconscious in the OR during her scopes. The biopsy's did NOT confirm she was in remission at that point but we discussed that if she continued to move in such a positive direction with the treatment, that she would soon be IN remission. If all things considered, and she WAS moving in a positive direction from where we were three weeks ago - I agree Annabelle would be in remission. But the reality is all these issues actually began 3 days AFTER her scope. The GI has been kept in the loop with all of this so I was shocked to hear it seemed as though he was giving her information to validate her opinion there aren't GI concerns. The other side of this is that when I called the GI yesterday and mentioned this problem, he told me that what Annabelle was experiencing was NOT a GI issue and I needed to see my pediatrician immediately. So why does he have such as influence now? And if he hasn't physically seen my daughter in almost a month, how does he even get a vote? Why don't we see a GI in St. Mary's so they can confirm we are not experiencing an EoE flare.. EoE can flare within minutes, Dr. Konikoff has no idea whether or not we have relapsed, all he has to go off of is his last visit with Annabelle in May and at that time she was well. Agreed.
My reasoning for not beginning the newest medication he prescribed on Monday: The medication is used to empty her stomach extremely fast. She is to take it 4x a day and to schedule her feedings around it. This will make sure Annabelle isn't going to sleep with formula in her stomach so she doesn't have anything to choke on while sleeping. But how do we know she truly has an issue with her stomach emptying? How do we know for sure it's reflux that's causing all this? The medication he wants her on isn't very safe from everything I've read - and with 15 medications on her laundry list, I am skeptical of returning to the pharmacy for another band-aid for my daughter. One thing that I DO know for sure; when Annabelle's stomach is empty, she is always in pain. This is why she never sleeps thru the night.. every night she wakes around 2am and as soon as something is on her tummy, it's better (beside the latest issues of course). Our last GI agreed that it's all the gastritis in her tummy that is so painful for Annabelle and when her stomach is empty, it hurts her which is why she wakes every night. Our last GI suggested always keeping food on her stomach. (Another reason a feeding tube would be really helpful :( but I won't admit that often) If we began the medication, we would be guaranteeing Annabelle's stomach is empty all night every night and I don't foresee that going well. I am NOT by any means refusing the medication - I would just rather a test performed to confirm the stomach emptying and reflux is actually the culprit. The biggest reason I didn't begin the medication Tuesday morning when it was filled: this was the day the temperatures began and I didn't want any change in our current treatment, if she were showing new signs.
Doctor: The waking and screaming is not a concern to me that she is in pain. If she were truly in that much pain, she would not be able to walk around this room.. Pain, as severe as you are describing, does not take place only during the night. You need to understand Ashley, Annabelle is 21 months old and is testing her boundaries. She is trying to see how much she can get away with.. maybe if she screams louder and longer, she can sleep in bed with mom and dad? Be consistent with her and soon she will understand that mom and dad are sticking to their guns and will not give in.
At this point I lost my mind. I kept reminding myself "Ashley, you are a christian woman. You are tired, do not hit this lady. Do not - hit this doctor!" I confess - I DID start yelling however. I was furious, I was BEYOND furious. "How DARE you say that to me?!" This has been happening for WEEKS. Maybe a normal kid that's fighting bedtime, this could be the issue - but I KNOW my daughter, my child is in PAIN with tears pouring off her cheeks every single night. The nurse last night witnessed what happens! I fully know how crazy I sound to say "my kid coughs at night, there's something wrong", but the fact is - There IS something wrong with my baby. There are so many things beginning to add up, and they need not to be itemized for a pathetic excuse explaining each one individually - they're related somehow, and I am here in the hospital for help. It's taken me weeks to come to this point to bringing her in, and we're here for help. She NEEDS someone to consider all these red flags and find their correlation to one another.
- Why was the Endocrinologist denied seeing Annabelle today?
Doctor: We would never DENY a doctor from visiting but I cannot justify a visit from Endocrinology when I see absolutely no acute reason why Annabelle needs to see an Endo in the first place. She begins to blab about how much she knows about Endocrinology, and how Annabelle doesn't fit that bill for x,y,z reason .. which many of them Annabelle DOES fit - but the more I tried to chime in, the louder and faster she talked OVER me and smiling with a condescending smile to validate that I had no voice in that room.
- My daughter is falling off the growth charts for HEIGHT. She's followed her excellent curve until the last several months and she's suddenly falling, fast. That isn't ok. Her temperature isn't regulating normally. My family has a laundry list of Endocrine disorders.. too many red flags for myself and my daughters pediatrician, that follows her closely might I add, are telling us that she needs to be seen. The doctor was willing to see her, so how was that your decision to decline that - without ever seeing my daughter for yourself first!
Doctor: Like I said before, I do not see any acute reasoning to have Endocrinology see Annabelle inpatient. If you would like to schedule an appointment outpatient, you are welcome to do so. You need to keep in mind that many kids do not grow at a perfectly consistent pace and Annabelle is likely just on the verge of a growth spurt, jumping the gun as soon as she slows down on a growth chart isn't something I would warrant a visit with Endocrinology but if you and your pediatrician make that decision, that's fine. I cannot support it on this pediatrics floor.
Me:Annabelle stopped eating two days ago. She hasn't had a wet diaper all day. We aren't concerned about that?
Doctor: For 1) As long as we are getting a wet diaper every 10hrs, we are ok with that. And you know some days our kids are really picky eaters, and they only drink juice and eat a bowl of goldfish and you have to settle for that when they go to bed.
Me: Goldfish? I wish. Annabelle hasn't eaten food in EIGHTY-SIX DAYS! Every ounce of her nutrition comes out of that sippy cup and she won't put it to her mouth! How is she supposed to thrive and get well without it? How do you expect a second wet diaper when she hasn't drank anything all day?!
Doctor: She isn't eating? Why? Was that your decision or a doctors decision?
Me: Again.. it took every ounce of effort to contain myself.
Doctor: I never want to poke a child or stick them with a needle when I don't think it's necessary. But if you want us to begin an invasive IV or start NG Tube feedings, I will let you make that decision as her mother. You let me know if you feel as though that is necessary and we will work together to keep everyone happy.
At this point I broke down and started crying. I think I was just so exhausted after the last several days of literally zero sleep and listening to a woman belittle me over my exaggerated impression of my daughter's care. I am terrified she is sick, very sick, her health is truly in danger and this woman isn't seeing that or willing to help. She walked into our room with her mind completely decided that Annabelle was healthy as a horse and somehow made up her mind without ever meeting us that there is no danger of any of these symptoms. HOW IN THE HELL someone can wrap their head around that opinion just blows my mind. Absolutely blows my mind!
I was bawling crying as I explained to this heartless doctor "I am her mother, I am here begging for help and you're leaving her care in MY hands as though I need to be the bad guy and decide if an IV is necessary?! You should be making that decision! Something is FN WRONG with my kid, how can you NOT see that?! How are none of you concerned? I came to a hospital as a last resort to getting help. I cannot manage a problem like this at home, there are too many signs that are telling both myself and Annabelle's doctor that she needs to be seen by someone else, and fast. That's why we are here, so why am I sitting here begging you to care?!"
Doctor: Please don't think we don't care. Please don't feel that way - we do care about Annabelle very much and are NOT kicking you out or discharging her. We are happy to watch her again tonight to see how things go. I just have no reason to go on to run any invasive tests. Please know that we could run tests after tests and never find out exactly what's going on, or get the diagnosis you are looking for. I don't see any justification for putting Annabelle thru that, but please don't think we don't care about her.
Woman! It's 5:30pm at night and this is the first time you've come into her room! You haven't even put a set of eyes ON Annabelle the entire time you've been in here telling me about how much you know. Don't tell me you care, because clearly there hasn't been any concern in your voice yet - if you were worried, you would at least begin ONE tests, and you wouldn't be declining visits from doctors that have already made an effort to see Annabelle.
Get my paperwork. Get everything I need, take the security band off my baby girls foot and get me the hell out of this hospital!
Doctor: I see no acute reason she should stay and I wish you all the best.
End of story.
There were many, MANY more points we exchanged back and forth, but those were the high levels and the selling lines that led me to believe that no matter how much I begged, Annabelle was not going to get the attention she deserves and needs at St. Mary's Hospital. I was beyond disgusted at the care (or lack of) we received all day, and am furious at the way the evening and conversation was handled. The doctor was pregnant, so I don't know if she was simply being a hormonal bitch that I caught at the wrong hour, or what was going on.. but not at the expense of my child's health will I allow someone to oversee her care. Ive fought too darn hard for this little girl and it's clear that answers will not be received while on that Pediatrics Floor.
I left the hospital with Annabelle in my arms in filthy jammies at 7pm. On the way home I called Annabelle's pediatrician and she was horrified at what took place at St. Mary's and she agreed, "Ashley you needed to get her out of there, probably this morning at noon when no one paid her a visit. I am so sorry you went thru this day. We will work hard to get help for Annabelle, first thing tomorrow I will contact the Endocrinologist back and we will have him see you asap. If/when Annabelle begins to have an episode tonight, or if her temperature changes at ALL, you need to go straight to MCV and call me on your way and I will make the arrangements so you are taken as soon as you arrive."
We came home and immediately gave her a bath while she moaned and made a half-way attempt to play with toys for a few minutes. After she was thoroughly scrubbed down and stripped of hospital-filth, we got her into jammies and I begged her to drink a cup. We were able to get her to finally eat a small bit before putting her to bed.
There is a reason for everything. God has a plan with every curve and bump in the road he puts in front of us. There is a reason Annabelle is demonstrating all these odd symptoms. I am learning who the right people are and are not to providing my daughter care and soon I will have them all figured out. Although this feels like 10 steps in the wrong direction, I believe in my heart there was a light in what took place.. somewhere. It was a painfully hard decision to carry my daughter out of that hospital. You take your sick children to the hospital when you are desperate for help and that's exactly what I did. Annabelle is still sick and needs help, and I had to sign her out to bring her home. That decision was harder than you can imagine, but the longer we have been home - the better I feel. This is where she needs to be. She can finally sleep and get rest, there aren't a flood of germs surrounding every surface and no one is going to accidentally give her someone else's blood pressure medication! Sadly, Annabelle is in the best care at home here in Chester, VA with mommy, daddy, her big sister and pup than she was in that hospital. I plan to keep her here as long as possible and will devote all day tomorrow towards our next step to finding help.
Please keep her in your prayers. Although we are home, we are not out of the woods. I am terrified of another fever - It cannot raise higher than what they have been, and it cannot drop lower than what it was last. I pray we do not enter more nights of pain for my helpless 21mo. I will sleep sound tonight knowing that Annabelle is in all your prayers and the good Lord is listening and has full control of what he is doing. I will continue to follow his guidance for finding answers and I believe we are moving in the right direction, despite the stormy clouds and fog - soon we will come out with rainbows on the other side and smiles all around! I know it. I feel it thru each and every one of you, praying and cheering us on. And I cannot thank you enough, from the bottom of my heart.
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