Jul 7, 2008

Trip To The ER

Thursday we made a fun little trip to the ER. Thankfully it wasn't truly an emergency but, none the less, it was still about as much fun as the emergency room ever is.

My sister, Sheryl (what would I do without Sheryl), had come over to help me take Ainsley to a doctor appointment with a naturopath. What can I say, I'm getting desperate. As I was getting her ready I noticed that she had some granulation tissue around the cannula at the stoma site. Oddly this tissue had developed rapidly over the past 3-4 days, where prior there was nothing. I had been noticing she needed more cleaning than usual and when I would do the routine trach care she would really cry. Poor babe. So we'd been doing more cleaning than usual and hoping it would just go away but when I was getting her ready to go Thursday she got so upset when I touched it that she broke out in a sweat all over her entire face. And I noticed two tiny white specs on one of the bumps. Not good.

Knowing that it was getting worse instead of better put me in a tough spot with the holiday weekend. I thought it best that it been seen in case it was turning into an infection. Clearly it was painful and Ainsley hadn't been acting right. So I paged the otolaryngologist on call. He was concerned and said they couldn't see her in clinic (it was about 2:20) and that I wanted to come to the ER ASAP before the attending otolaryngologists left for the weekend.

I decide to cancel the naturopath appointment (and unfortunately this doctor is now out of town for 6 weeks. Bummer.) and leave my sister with the kids at home and risk the drive by myself rather than have them stuck with me at the ER. When I get to the ER I explain the situation that the on-call doctor had me rush in because he wanted the attending to see her. So I'm still waiting nearly 1 1/2 hours later just to see the regular ER doctor who I have to see before the otolaryngologist. It's procedure. I have to make kind of a fuss because I'm afraid those doctors are getting ready to leave for their holiday. Squeaky wheel and all, a few minutes later the ER doc shows and says, she won't be able to help me I need the otolaryngologist. Duh. At this point it's getting near 5:00 but just in the nick of time the nurse reached the on-call otolaryngologist and he comes a few minutes later. He had notified his attending who'd be on his way shortly. In the end it was the head of otolaryngology who came. He burned off the growth with silver nitrate. In addition to him we had the on-call otolaryngologist, and two otolaryngoloists in training, so that's 5, count them, 5 otolaryngologists in our room. I sure hope that nurse walked by so she could see that I was not being an over dramatic mom. We even chit-chatted about Dr. Cotton and they took a card from our Tracoe trach because they liked them and want to look into them. So luckily it all worked out okay in the end.

We got a prescription for an ointment that we've been using. It seems to have done the trick along with the silver nitrate and she is back to normal. The growth is gone and she isn't so sensitive to it being touched.

The one thing the attending otolaryngologist said, that I wasn't too thrilled about, is that he thinks she may be headed for a stoma revision surgery because of how bumpy her stoma is with scar tissue. I hope they don't want to do that because I have a feeling that the way Ainsley scars it would just come back. I'm still hoping she'll get decannulated one day in the not too distant future and that the stoma revision can wait until then so that she has the best looking neck possible. I would guess you can only cut away so much skin, so many times, before things start to look pulled. We have a scope scheduled for the 14th so they'll be able to follow up on the granulation tissue then.

On a positive note, what made it all worthwhile, as I was walking to the pharmacy to get her prescription I ran into Dr. Song, her orthopedic surgeon. I was able to talk to him for a minute about the problem of her hip tightness and how it's affecting her legs, making one seem longer than the other. And one thing led to another, he checks her out while we're standing there in the hallway, and he tells me we can lose the leg brace! We are thrilled because we'd been told in May that we'd be keeping it until September. He wants us to come back in 6 weeks for another x-ray to see how she's doing. She is sleeping so much more comfortably. It's SO GREAT! Remember she's slept with her legs apart, on her tummy, in a fixed position, for over 7 1/2 months! Imagine that the next time you're tossing and turning in bed and perhaps you'll feel instantly more comfortable.


  1. Glad to hear you were able to catch someone before the holiday weekend... Wouldn't it be nice if we all got to "disappear" for the holiday weekend ? " Sorry kids, bath ,feed, and change yourself until 9 am Tuesday morning - mommy is off for the holidays " LOL....

    Also it is great about the freedom of the brace !

  2. That's so funny to hear about all of the ENT's in one room. It sounds like Tommy's ER room every time we have to make a trip-20 doctors, nurses, RT's, and techs in one teeny little space. I'm glad they were still around for you! I hope you can get back in to see the naturopath doctor sooner than 6 weeks. Maybe he'll cut his time out of town short.