Monday's Downhill Slide

This weekend's happy times, were short lived. I had a feeling we were heading downhill Sunday when Annabelle's mood began changing again and she started to become monotone and quiet. Sunday night she started the coughing fits. She moaned and cried to herself for most the night Sunday night.. 1/2 of me was concerned that we were heading back to where we were last week, the other half of me thought, "I bet that brat ate some of that Vicks when she was playing in it.. no wonder she feels yucky!". Regardless, it wasn't a peaceful night for Annabelle.

She woke up in the morning bawling crying right away. That's never a comforting sound when you wake up every day praying, "Please, Please Lord let this be a good day for my little girl". We brought her downstairs and she didn't want to be put down, she didn't want to eat, she didn't want to watch Mickey Mouse, or play.. she was just upset, tired and not feeling well. She didn't have a fever, fortunately, but I was skeptical. I went to work knowing the day would be filled with anxiety. I drove on the way to the office and had butterflies in my stomach the entire time, "Should I be coming into work? Should I be at home?"

Around 11:30a I received a text - Annabelle was still not doing well. She wouldn't calm down since the morning and nothing was making her happy. I told her to continue taking her temperature and call me the moment it begins dropping or spiking. Within the hour her temperature dropped from upper 97 to 95, with fear that it would continue to fall, or it would begin to spike, I flew out the door and headed home.

12:30p
On the way to my house I called our pediatrician on her cell, "Annabelle's temperature is dropping, she has been crying all morning and hasn't eaten since yesterday afternoon. What do I do? I really don't want to go to the hospital yet. Can we talk thru this?" Together we came up with a game plan; Come to the pediatrician's office, we will begin bloodwork and get started on a bunch of labs. While we are there, if her temperature continues to drop lower or spike, we will have Annabelle transported to the ER from the office. This way she is always in the best hands no matter what happens.

When we arrived to the pediatricians office, her temperature was 94.1 - we immediately began on starting bloodwork. The moment you set Annabelle in that chair in my arms, she knows what is happening. Once you put the snug band around her arm, she starts screaming. I warned the nurses that she is SO strong, I will need help holding her still, and also, her veins are difficult, they roll and are never easy to get - so take your time finding your best stick. We looked around for several minutes, and although Annabelle wasn't being stuck yet, the anticipation was only building in her poor mind because she KNEW what was happening, and she just began to get more and more upset. It was heartbreaking. Finally we decided to go for a good vein in her hand. She made it the first time but then lost it.. she dug for only a good minute or so before we decided to stop. Her hand immediately swelled pretty large and I tried to take the opportunity between arms, to console my sweet little girl. There was no amount of consoling her, she wanted out of that chair, out of that room and to GO! Once we moved over to the next arm, my poor little baby started begging, screaming for "Lambie", it broke my heart as she scooped him up under her arm and laid her head on his and just cried. We looked for a couple minutes and then braced for the second stick on her right arm. Since this one was in the crease of her elbow, Annabelle tends to move her shoulder around a lot that moves her vein and starts rolling them.. which always results in losing the vein = more digging. We kept the needle in this time but it took several minutes of repositioning each time she would wiggle.. which was constant. She dropped Lambie and turned her little body and faced me with her arm behind her getting worked on. She wrapped her left arm around my neck and started screaming, "Mamama! Mamama!" with tears flooding her face.. gosh she knew just what to do to kill me inside! What can I say though, "Im so sorry baby, I love you, I love you, it's almost over, I promise........ Baby Annabelle, of mine. Everything about you is perfectly fine. I love what you are and I love what you do. Sweet Baby Belle, I love you." Soon after, we were finished, we settled on the amount of blood we were able to get.

Our doctor came in while we were cleaning up (side note. Don't ever wear new White House Black Market, white dress pants on the days your wiggly daughter is having bloodwork.) Dr. Young and I discussed Annabelle and what was happening, I communicated my fears with the fevers and she repeated several times, "Ashley, you have to take her in as soon as you know it's time. I understand and support you not wanting to go to the hospital, but when it's time, I will know you are making the best decision, and it's necessary. Call me the minute you decide and I will have everything ready for you when you arrive." We took her temperature again, and who knew having bloodwork done for 30min would raise your temperature to 96.5! Apparently all I need to do to bring her temp up, is piss her off enough. I kid, I kid! I decided I wanted to take her home to rest and we would stay in touch.

On my way home, I needed to stop in my office to collect my things. I have so many projects going on at work that I HAVE to wrap up.. life's curve balls are really hindering me from doing my job well and that itself is stressing and depressing me. I carried Annabelle inside, and while collecting my things, I was able to introduce her to a few of the people that are praying for her daily. It was nice to be able to give them a face to the stories I share about my girls in the office. Annabelle was limp, she was emotionless and non-verbal. She couldn't lift her head if she tried.. she seemed defeated and exhausted. I made the lap thru my office as fast as possible and ran back to my car with my laptop and notes to work from home.

On the 8m drive home, Annabelle leaned her head to the side of her carseat and whimpered the entire way.. not crying, just whimpering to herself. When I brought her inside, she wasn't interested in sissy, she didn't care to see anyone else. I made her a cup and walked upstairs with her.. very quietly and laid her on the changing table and just stared at her. She looked like a pale, but full red cheeks little girl that was begging for help in her eyes. I just watched her. "Annabelle, I am so sorry about today baby. Mommy is here and I am trying. I promise sweetheart.. I am doing everything I can to help you. Keep fighting and mommy will find the answers, I promise. I love you, I love you, I love you." She had a little tear fall out of both sides of her eyes and she just watched me. It took everything I have to not cry my eyes out with her. I changed her diaper, though it was completely dry. I offered her a cup and she pushed it away.. she still hadn't eaten all day again. Finally I laid her in bed and she didn't move. She just laid there.

I think seeing my child limp and emotionless is 100x worse than seeing her fiesty and screaming. At least then I can see and feel her energy and know she is fighting.. at this point I feel like she is surrendering, and she can't do that. She was so tired, and in her defense, she did exhaust herself fighting a needle at the doctors office for 30min, heck, I was tired from holding her down that long! She laid down yesterday afternoon but I don't think she ever really slept, at this point, relaxing is just as good as sleeping I guess. We'll take what we can get.

Dr. Young texted me Annabelle growth charts.

Here is her weight: You can see the roller coaster we have been on with gaining and losing weight. The spike was during the time of liquid prednisone and now.. hopefully we maintain the curve where she should be. She is still on so many medications and steriods that I know are keeping her weight on, but at least it's a healthy maintained curve. I am ok with it..

Here is her height: A child should maintain their curve.. even if that is on the higher end, or the lower end, it doesn't really matter. But a sudden drop on their curve is not normal. She hasn't picked it back up yet either. This is our pediatrician and Endocrinologists main concerns. The heights fluctuation also reflects around the times we were changing her nutrition and between diagnosis, it has raised flags in more than one area on our current treatment, medication etc. Something is just not right..



Tonight will be touch and go. If anything at all changes, if she doesn't begin to perk up, start taking fluids, temperature becomes unbalanced, we are headed to MCV. I still haven't heard from Endocrinology and wish they would return my call. I don't like waiting.. I don't like looking at my child and telling her to wait. I don't have a lot of patience lately... I want answers and help, now... yesterday.. last month.. last year!