Quick(ish) ER Trip

Brother is sick. Daddy is sick. And yesterday you started feeling warm. I gave you a dose of Tylenol and you slept fairly well through the night. Liam, however, did not. He sounded like a creaky door with each inhale and exhale.

So this morning when you woke up looking worse than last night, I decided might as well take you to the doctor if I am taking him to the med center. So I called both doctors at 8:30, and got him an appointment for 11:30. The special needs clinic office personnel told me that there was only one nurse returning calls, so it might be awhile before I heard back to see if there was an opening. Honey came over by 9:00a, but since I had decided showering was a necessity for me, we weren’t ready to leave yet. You had fallen back asleep and I left you for last minute. Once you woke up, it was clear you were not doing well at all. You were pale, lethargic, your fever was up and you sounded horrible. You coughed and sputtered the entire way into town. As we got closer (about 10:30) I decided you were more concerning than Liam, and needed to be seen first. Having not heard back from the nurse I gave the clinic a call. Before I could even explain your situation, she interrupted me to say, “Mom, now remember I TOLD you we only have one nurse between two clinics. You are just going to have to be patient.” Uh. No.

Me: Well, I am calling to see if it is going to be so long that I need to take her to the ER instead.

Her: Mom, I can’t make that decision for you. If you think she is that bad, then go ahead and take her. But we take calls based on urgency, so it might be awhile before you hear back.

Me: It’s urgent. I’ll take her to the ER.

Goodness. That really ticked me off. So since I was aggravated, I took you to the ER. Now, here’s the deal. Since your doctor is at TCH anyway, the ER is just the bottom level. It’s not really like, oh no, you were in the ER. Basically I just wanted someone to look at you right away, and I knew they would. Last time you had this exact same thing, we waited too long before going to the ER and you ended up in emergency surgery, and intubated for 4 days. I was determined to avoid that again. And I was just angry.

Honey drops us off and we head inside. They take us back right away and two nurses ask all the standard questions. You actually don’t look as rough there as you did at home, and I haven’t heard a single cough since we came inside, so I spend some time convincing them you really are sick. Your arms and legs are modelled (I have a feeling that is not how it is spelled) and that is what concerns them. I explain that it actually IS much worse than usual, but we do always expect some of that from you. Right away they take us to a room and a different nurse asks the same questions and takes notes. She is concerned with your modelling as well, and grabs a doctor to look at you. He checks your capillary refill time and it is three seconds. Not bad. He explains a trauma is on its way in and all hands will be on deck for that. They were just making sure you didn’t need immediate treatment before everyone was taken away.

As we wait, you have two big diarrhea diapers. And then feel all better. Seriously, all better. Talking. Smiling. Laughing. ROLLING from side to side. Audrey, you don’t usually roll on a good day. I always suspect BM’s have to do with these episodes, but I am not sure how to prove it. Anyway, after being there about 45 minutes, the nurse checks on us again and asks how I can tell you were lethargic since you can’t move that much anyway. I tell her it’s mainly just because I’m mom, but usually you are pretty engaged and interactive…sort of like right now. She agrees you look much better.

(Here you are..."sick".)

At this point, Liam is my main concern. So I explain to her how your brother is also sick in the waiting room, I need to get him to his appointment at 11:15, can I go now? No. They doctor had to check you out first. But, I reason with her, you don’t have fever, your 02 is 100%, you are active and happy, not coughing…there is no reason for us to stay. You are just taking up a room. This ER idea is backfiring.

I understand it is totally liability. I do. But what happens if we just leave? She said I would have to sign a waiver and they couldn’t stop me but they didn’t like it. I didn’t want that on our TCH “record” so I agreed to stay a bit. I called right away to reschedule Liam's appointment and immediately the doctor walked in. The nurse must have told her I was thinking about leaving.

I really liked the doctor. After having spent the first part of my time there convincing everyone you were sick, I spent the next ten minutes convincing her you weren’t. After going over your medical history, she agreed it was the right thing to bring you in, but that there was no reason for you to stay. So she would discharge us. What I didn’t know was that it would take another hour to get those papers. And only then because I opened our door and stood in the hallway, staring at the bank of nurses in front of our room. We finally walked out to where Honey had the car pulled up around 12:45. We didn’t make Liam’s appointment (it was rescheduled again for 2:30) but we had time to get some lunch.

Here is the kicker. As we were checking out, they did one last exam. Your temp was up 2 degrees. And as we walked outside, you started that coughing again. Oh, Audrey. What is it with you guys? As soon as we are in the vicinity of a doctor you miraculously feel better.

As frustrated as I was at times, TCH is an awesome place. I heard a knock while we waited in your room, and it was a lady with a nice little coffee cart offering free coffee to (most likely) scared and stressed parents. That's so thoughtful. And even though I was going crazy sitting in that room while you were fine and brother was sick, we probably still got in and out faster than if we had gone to the special needs clinic. Exhausted, our day wasn’t over…you can continue reading the saga HERE.

Taking Care of Business

We went to Dynamic Orthotics today, just the two of us. Liam is sick, so he stayed with Grammy. The purpose of today’s visit was to take care of our PMR checklist.

We had them tighten your night-time AFO’s and took measurements for the SPIO suit and Hensinger collar. Unfortunately, at this point it looks like the collar and TED stockings aren’t made in a size small enough for you. Mr. T is going to look for an alternative, but doesn’t sound too hopeful. We will see what he has come up with when we go back to get the SPIO suit in a couple weeks.

Cheers for Audrey!

You played in the "intelletainer" for a good 15 minutes or so today. No weight bearing, but you were actively trying to push buttons. Each time you played the music, Liam and I would cheer and clap. I was making dinner while you two played, so even if I got distracted and forgot to say "Yaaay!" your brother would remember. I enjoyed watching his face light up from the kitchen each time. And he practiced such restraint not pushing the buttons for you. He is proud of you when you do big kid things.

Little Lady Leprechaun

Here you are in your St. Patrick's Day outfit. Look at these adorable socks your Aunt Shanna got for you! I know it's the 18th, but since you didn't get to wear it yesterday, you are wearing it today.

This is the only picture we snapped before you got sick at the dog park. (Oh yeah. You started throwing up again two days ago. You made it a total of 14 days.) Poor little shnook.

Priceless

Audrey. We almost had a major tragedy. We almost lost ALL our pictures. I mean ALL 19,000 if them. It is a long story how, but I deleted every single one off our computer.

But Daddy is our hero. Through the Holy Spirit’s prompting I’m sure, he started backing up our computer files through Mozy about a month ago. So with only a little work we were able to get them all back. Best $5 bucks a month we could have spent. I would have been devastated. The pictures of our little family are beyond value to me.

PMR Checklist

Today was our PMR appointment with Dr. W. This is the course of action we have decided on for now.

*Call The Wheelchair Shop to have your seat adjusted. We discovered your tailbone goes towards the left. So while scoliosis isn’t a problem that needs to be addressed at this point, you look crooked when you sit. This can be fixed by leveling your seat pad accordingly. We also need him to adjust your stander.
*Take a script to Dynamic Orthotics for a hensinger collar (for use in chair to bring head forward), TED stockings (for circulation in feet/legs), a SPIO suit (compression for body awareness and support).
*Gradually shave down incline of shoes as you adjust.
*Look into aquatic therapy and massage therapy.
*Increase your diazepam to 1 ml, twice a day.
*Get a speech eval so that we can seriously pursue switches as your primary communication device.
*Use kenesio tape for positioning of feet and wrists.

I left the doctor with a thick stack of papers and what I felt like I was a huge to-do list. But it looks much more manageable written out like this.

She also explained to me that you have dystonia. It is a neurological disorder that affects muscle movement. No treatment exists other than positioning. But it explains some of your odd movements and behaviors. What I thought was seizures 18 months ago (which led us to discovering your hydrocephalus) is perfectly explained by dystonia. Just good to know.

I am also glad to know about your tailbone. You have always had such a…different….little bottom. During the appointment I mentioned your tailbone to Dr. W, and she sort of rolled her eyes and said, “Ahh, the tailbone. Parents are always worried about the tailbone, and it is almost always fine.”

But in the usual Audrey fashion, when she took a look she had to step back a moment, looked again, repositioned you, and then said, “Huh. This is interesting.” Going toward the left makes sense—now we just have to figure out how to make you sit on your sitting bones, instead of you crooked tailbone.

There is never a dull doctor’s visit with you Missy Moo, that is for certain. Thanks for always being such a trooper. You never complain about having to go into the Med Center, when you have every reason to. Maybe it’s because you know that we almost always make progress whenever we visit a doctor. Or maybe it’s just because you are the sweetest girl ever. Probably that one.

Early Birds

Dear Audrey & Liam—

Please go back to sleep. It is 6:00am which is really more like 5:00am. With the time change, nobody should be awake before 7:00.

Love,
Mom