Saturday, September 4, 2010

Our poor girl has been sick....

Samantha has been sick for about a week now.  It all started with a fever last Saturday. By Sunday, the Tylenol was not working and only 2 1/2 hours after her last dose she had a fever of over 103. In addition, she was choking each time she tried to drink anything so had started to refuse to drink anything at all. As Val and I know that dehydration is a big concern for kids with metabolic conditions (as in could cause serious consequences), we called her pediatrician's office. The on call doctor agreed that an ER trip would not be a bad idea.

So on Sunday we had our first ever (and I hope last) ER visit. CHOP's ER was nice enough. No real wait to speak of.  Once we were "checked in" we had our own little mini-room, complete with TV/DVD player.  I didn't feel the nurse or the ER doc understood very much about metabolic/mitochondrial issues, but I assume that is common in the medical world. In addition, Samantha is a "hard" stick. So the ER nurse tried three times to get an IV in her and failed each time.  The entire time she was trying, there were three of us (yes, me included) trying to hold still and soothe our hysterical toddler.  Eventually, the IV team was called, and the woman did a great job. However, Sam was still very upset to be held down yet again. After that she was afraid of the bed and thus would cry each time we sat or laid her down in it.  Poor kid.

After her IV fluids were pumped we were allowed to go home as the few tests they ran came back negative (with the exception of her being dehydrated when we got there).  They assumed she had some sort of viral infection.  Since then Samantha has been drinking more, although not as much as I would like. However, she's also been choking more than usual on fluids, which has been scary for us. She has even been choking in her sleep.  We hope this is just a symptom of her sickness this week, and not her new normal.  We suspect a swallow study will be coming up soon.

Val and I try so hard to avoid sickness for Sam as it can be so scary for kids with her issues.  I know that getting sick is inevitable for kids. However, I think going forward the new rule in our house will be that everyone needs to use hand sanitizer when they come to visit us.  It might not help, but it certainly couldn't hurt.  So, if you happen to visit us, please don't be offended by the hand sanitizer sitting out just waiting for you to use it.  It's not you, it's us ;)

As for doctor updates....

Her neurologist is frustrated by the fact that we can't get in to see metabolics until late October. So, he's set up an appointment with another doctor in his unit for this upcoming Tuesday. I believe she is still in training but he promises she knows a lot about mitochondrial disorders and may be of some help to us.  In addition, the neuro thinks she can help us get the genetic tests redone before our late October appointment.  That means poor Samantha will need to be stuck again in the near future.   I suppose it has to be done, but I know she is not going to like it.  Neither will I.

Until next time,



  1. Oh I'm so sorry to read this! A couple things that have helped us... If a nurse can't get an IV in after two tries, it is perfectly ok to ask for someone else to try! Lindsey is a hard stick as well, and we've had 3 or 4 people on a given day try. Sometimes it just takes a particular person who sees the right spot that someone else couldn't see.

    I've also started the rest of my family on a strict vitamin/supplement regimen to try and keep us as healthy as possible so as not to be passing sickness along to Lindsey. Of course it is still summer, but so far, just a round of very minor colds (although not so minor in Lindsey)...but I'm hoping once school starts, there will be less sickness than normal in our house.

    I'll be thinking of you all. :)

  2. Thanks Heather! Her blood draw today went as well as it could. Sam is definitely still "fearful" (and tearful) but the lab tech did a great job of getting the stick done right the first time. I am not sure why "every" stick isn't done by those who do it all the time. They are the only ones who seem to "get" Sam.

  3. Coming over from P2P, and just wanted to mention that some mito docs don't recommend using Tylenol. I would ask others about it.


  4. Thanks Sue. We had heard that too but gave it as a last resort as her fever wasn't going down with Motrin....but we'll definitely ask her metabolic doc when we get in in October.

  5. I pray she's doing better today? hugs to your sweet girl-
    Heidi & Jack
    {life with Jack}

  6. Is she feeling better? Hoping she is and that it was only a virus. So hard to not catch viruses. Oh and I say hand sanitizer and soap and water Julie likes the sanitizer I like good old soap and water.

    Hey Mon, We are planning on going to Linvilla to pick peaches and they are having a small craft fair tomorrow. We are going in the morning, maybe you girls would like to meet up there? We are heading down around 9ish.

  7. Sorry to those who asked here (I'm a bad blogger in that I don't check my own blog daily for comments), but Sam has been doing better and seems to be back to baseline with her swallowing issue. Thank you for asking!

    We actually have a feeding/swallow appointment tomorrow for an initial consult/eval. I'll probably blog about it afterwards, but we are hoping for some guidance as to what to do if her swallowing gets that bad again.