Worried in the ER

Yesterday around lunch time I noticed that Livia had a bunch of little red dots over the bridge of her nose, under her eyes, around her temples, and across her forehead. I’d thought for about a week that she looked pale and tired. I called the doctors office right away but couldn’t talk to a nurse right away. I called my aunt in Michigan who is a nurse and has an extensive pediatric background. I described Livia’s face like someone had taken a straight pin and poked all over her face. Brenda thought it sounded like petechiae, and that it should be checked out. Apparently, people who have vomited a lot or have coughing spells that are choking can get petechiae. Livia has had none of that. It can also mean that she has low platelets. Her platelet count is usually on the low side, but something that needed to be checked. Our pediatrician recommended we go to the ER to get blood drawn and results right away. We made our way to the ER, which anyone who has experienced going to an ER knows how stressful it can be. Long waits, crowded waiting rooms, people wearing masks, drunks stumbling all over the place, and maybe even a women in labor. Not a fun place for a 4 year old to be. We really didn’t have to wait long, which was a relief. Once we got checked in, it was a non-stop explanation of what Sanfilippo Syndrome is. Thankfully, I had some of the brochures that I made with me, so I handed them out and explained along with them. I got great response and warm regards from the brochures (which I wish I’d made a long time ago). But every single person we came into contact with had never heard of SS or the supplement she is on. So once again, the gritty and grim details were pouring out of my mouth. The staff was very kind to Liv and as accommodating as possible. Blood was drawn and a brief “once over” assessment was completed. She is so use to her blood being drawn that when they prepared for the blood draw she just stuck her little arm out like she knew what was coming. It brought a tear to my eye. At least she doesn’t put up a fight or scream. She’s one brave little lady. After being there for 4 1/2 hours we were free to go. Blood results showed her platelets are low, but not low enough to replace them. I left feeling like I didn’t really get any answers. I left feeling like a number. Trying to speed our discharge up, I opened our room door and sat on the end of the bed. Our room was located in eye shot of where our Doc was sitting and dictating. I think he could feel me looking at him. I then heard him say “could someone please get G out of here.” So, let me re-phrase. I didn’t feel like a number, it was more like a letter. We were in room G. Our nurse practitioner called this morning to check on us and ask some questions. I expressed to her that I didn’t feel as though I had any explanation as to “why” this was going on. She asked me if they did x,y, and z. I responded no, no, and no. She was concerned, and is getting all of her blood work and assessments to re-evaluate. So, we still don’t really know whats going on with her. I kept her home from school today to rest and just keep an eye on her. She and Finley have really enjoyed playing at home today. I made them a tent to play in, been giving horsey back rides, played barbies, and tickled a little. They are having a popcorn snack, and since I’ve been typing it’s all over the floor and couch. Time to get the Dyson out! Time to give my attention back to them! Thank you to everyone who emailed, facebooked, called to check in, or give their words of comfort and prayers. It means so much to know there are so many of you who are thinking of Liv and the rest of us and sending up a little prayer! We’ll keep everyone posted!!!