Tuesday, February 18, 2014

"Is This an Urgent Matter?"

I shared with you in this post, Bottom's Up, about my little Rylee's hemangioma on her bottom and how it is ulcerating.  Well, last Thursday I noticed a few spots that looked new on her bottom.  I was afraid they were the beginning of new ulcerations forming.  I was right.  Over the weekend those spots grew larger and by Sunday evening, there was no question as to what they were.

We already had an appointment scheduled with the pediatric dermatologist for next Thursday, but with these new ulcers growing at such a rapid rate, I decided I needed to at least call in and inform them of these changes.  I also decided I needed to take a few pictures so that I could have documentation of these changes.

So yesterday, Monday morning, I took the pictures and called into the clinic.  Only it was closed for President's Day.  Sigh.  I left a message.

By the afternoon and a few more diaper changes, I decided I wasn't going to wait for the next day. These diaper changes had both Rylee and myself crying.  It hurts her so bad, and it hurts me seeing her in that much pain.  I decided that I was going to contact the on call doctor.

I called back into the clinic, and followed the prompting to speak to the answering service.  The automated voice message directed me to tell the operator that I needed to have the dermatology resident on call doctor paged.

I told the lady exactly what I had been prompted to say, "I need to speak to the dermatology resident on call doctor."

Operator: "Is this an urgent matter?"
Me: "I'm not really sure."  of course I think it's urgent, but would they?
Operator: "Is this so urgent that you can't wait until tomorrow?"
Me: "I don't know, that is why I am calling."
Operator (snide voice): "It's a yes or no question?"

I didn't know what to say.  I was having an internal debate over whether it was so important that it couldn't wait until the next day.  So I hung up the phone.

If it was sooooo urgent that it couldn't wait until the next day, wouldn't I have just taken Rylee to the Emergency Room?  What's the point of having an on call doctor then?  If it was deemed to be that serious, I doubt I would be messing around with a phone call.  God forbid I disturb the doctor that was getting paid to be on call, for something that might not be that URGENT.

I was already upset because of my worry for poor Rylee's bottom and the amount of pain she is in, but now I was upset because this lady was so fricking rude!  I texted the picture to one of my good friends and then I called her to vent.  She had just seen Rylee's bottom on Saturday, and she agreed that it looked much worse.  My friend convinced me to call back again.  Yes, it IS an urgent matter lady!

So I called back, only this time I got a different operator that didn't question me for calling on a holiday.

The doctor I talked to wasn't someone I knew, but he listened to what was going on and asked questions.  He told me that it is unfortunate that as these hemangiomas heal, they do go through this ulceration stage and it is painful to have to watch.  He asked me questions, trying to determine if there is a possible infection.  We talked about what we've been doing to treat the ulcer.  I told him how much pain Rylee has been in.  I also told him we have an appointment scheduled for the 27th, but that seemed like a long ways away with the rapid pace that these new ulcers were developing.

He told me he wanted to contact one of the doctor's that have been working on our case, and then he would call me right back.  He wanted me to text him the pictures I had taken.

When he called back, he asked if I could bring her in the next day.  They would be doing the same thing they would have done on the 27th, but felt they should probably check it out sooner.  The biggest thing is that they will be checking for infection and determine if they need to make any medication changes.

This is a busy doctor's office.  It usually takes several weeks to get an appointment and they wanted to get her in the NEXT DAY.  In my head, I was smirking at the snarky operator lady. Apparently they DID deem it an urgent matter, (fill in bad name calling here for the operator).

My sweet Rylee
Okay, now I'm going to share the pictures I sent to the doctor of her bottom.  I'm going to scroll down a bit before I post the pictures, so that if you are one that gets grossed out easily and don't want to see them, you can sign off now.







































Original ulcer - it has stayed this size pretty much since she left the hospital

The new ulcers that are joining in the not so fun times

Now you see what we have been dealing with.  And yes, I DO happen to think it is an urgent matter.

36 comments:

  1. YES that absolutely looks like an urgent matter! Oh poor Rylee. :-(

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  2. Oh my goodness, poor Rylee! I can't imagine how painful that it for her. Yes, I would say that's definitely an urgent matter. I hope they can do something to help her. Seeing your baby in pain is the worst thing ever.

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  3. Oh my gosh the poor girl!! It looks so painful, no wonder you are both in tears during the diaper changes!! I really hope they get this fixed up quickly. It is definitely an urgent matter and I'm glad they didn't make you wait another week to go in.

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  4. You should send those to the operator -no question whether it's urgent at all! She'd be biting back her words in a hurry. And this is coming from an ER nurse who deals with "urgent" (insert sarcasm) things all the time. I wouldn't have blamed you for showing up in the ER with this either. Poor little kiddo; that looks so painful!

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  5. Oh my goodness that looks so painful! So sorry you and rylee are dealing with this! Hope the apt goes well!

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  6. Yes for sure I'd say urgent, poor Rylee and you too! I am so sorry y'all are having to go through this :( I sure hope they are able to help her soon.

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  7. Poor thing. You did the right thing by calling and I hope she's better soon!

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  8. I never could have imagined this from your last post. I am SO sorry that your poor baby is going through this and I am sorry you are going through this.

    I sure hope she heals up soon and gets rid of this for good!

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  9. Oh my goodness, poor Rylee!! And poor mommy for having to see your baby in pain! : (

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  10. Yes urgent. Don't ever let them make you question yourself again. You are the mom! Damn straight it's urgent if you decide to call a doctor!!!

    I hope they can help her!

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  11. Oh poor girl! That looks awful, and I'm sure it's worse because she doesn't understand what's happening or why she is in pain! I hope you are able to get this taken care of quickly.

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  12. Poor Rylee and you! Yes this is urgent and I am glad you got it sorted out.

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  13. WOW. That picture really brings things to light. Poor Rylee and mama. I couldn't even imagine. They need to get something figured out and soon! I would want to bitch slap that person on the phone so hard and shove that picture in her face. So rude.

    Praying for you guys!

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  14. Oh my goodness! Poor sweet baby girl!!! And poor mommy! My heart breaks just reading about this and then seeing the pictures just makes it break even more :(. I am SO glad you called back and that you're being seen today. Keep us posted. XOXO

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  15. Oh my goodness, poor Rylee and poor Mama! I can't believe that sweet thing has to deal with something so painful. I hope that she recovers soon!

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  16. Oh my word. Those poor little buns! Mommy's instincts are usually right. I'm glad she can be seen sooner rather than later.

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  17. I sent you an email because my post would have been WAY to long. My son has a hemangioma as well that we noticed when he was two weeks old. It's absolutely heartbreaking to feel so helpless as a parent. I wanted to send you an email with our experience, the things we found worked and the medication the specialist prescribed him. Hopefully it didn't go to your junk mail!

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  18. Poor sweet Rylee! And poor Mama! I just can't imagine how awful it must be! I'm glad they are moving up the appointment!

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  19. Oh my goodness! Thank you for providing pictures because I was having a hard time visualizing what was going on. I am SO sorry this happened to her and for the pain it is putting both of you through. Like everyone else said, don't let those operators make you second guess yourself because you know what is best and that operator is irritating! Please keep us posted on how things turn out. God bless you and your family!

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  20. Ummm! Urgent Matter? Heck yes! Oh my Goodness! I'd be crying too! I knew what you were talking about before as my nephew had one...but not that bad! I'm so sorry you and your little sweet girl are having to deal with this. I hope it continues to heal, and heal fast!

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  21. Oh Amber that looks absolutely awful. And YES it looks urgent enough to place that call. I'm so sorry you are dealing with this. And that poor R is in so much pain. I really hope they can do something for her soon. I'd raise hell with the clinic about their operator as well. Squeaky wheel gets the grease. Her response to you was NOT acceptable.

    Hugs.

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  22. OMG! I have only seen ulcerations like that on my dad's legs and those I know from him are really painful. Sorry that you had to deal with an idiot operator when you called. Hoping they can help your daughter with the appointment today.

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  23. I gasped out loud and tears filled my eyes when I saw those photos. Poor baby and poor mama :( That looks so painful, and I hope things start getting better soon. I know this sounds super "crunchy," but have you looked into elimination communication with her? It might be worth it to help with the diaper irritation.

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  24. someone already said it - those poor little buns!!
    hope there is some relief and healing for sweet Rylee in the very near future!!

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  25. Oh my goodness Amber, the poor thing! And you too! You absolutely did the right thing. I really hope they can figure out a way to make her better soon.

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  26. Oh no! Poor, sweet girl. I hope they get it healed for everyone's sake.

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  27. Wow, I didn't know that could happen, my son has them too but haven't even monitored them because I thought they just got smaller. Thinking about you and Rylee!

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  28. Ouch! I hope she gets feeling better soon! I was wondering what it looked like. thanks for sharing pics!

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  29. Okay, now Great Auntie is crying with all of you. I have to say though, you two have done a great job of it not getting infected. I hope you learn something helpful to ease your minds and pain at the doctor's appointment.
    I had to sit and just enjoy sweet Rylee's pic before scrolling further down! She's beautiful!!
    Sending lots of love, hugs and prayers! Auntie

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  30. I'm so sorry to see these pictures on your beautiful baby! I hope the doctor is able to give her some relief. Sending prayers to you all. Take care!

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  31. Oh my. That is so much worse than I imagined. The poor thing must be in so much pain. I can't imagine what you go through with each diaper change. Glad you're getting in to see the doctor early. Hopefully they can do something to speed up the healing.

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  32. Oh Amber! I am just heartbroken for you poor, sweet baby girl...and for you. My mouth is literally hanging open. I can't imagine an adult dealing with that sort of pain...let alone a little baby. You must feel so helpless in all of this. I can't imagine the frustration you must be facing every day as you care for her little tush. I am praying, praying, PRAYING that this heals soon and that things start looking up.

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  33. my daughter has the same thing!! was wondering if you have any information on this...

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  34. I hope things are better now! My daughter is 11 now and I went through the same thing with her as an infant. It was a nightmare. So hard to find doctors that took me seriously too. Found a wonderful doctor a few hours from us that did laser surgery 4-5 times on it throughout her first year and that would stop the ulcers for a while. She had it from her labia all the way up to her tailbone. Lots of scarring now, but hopefully the only person that will ever see it will love her deeply and not care. Hugs. I hope she's better now!

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    1. Things are MUCH better! She still has a little bit of the hemangioma left, but it's mostly scarred like you said. The doctor thinks there's a good chance it might all go away in the next few years (not the scarring, but the hemangioma). Not an easy thing to go through, that is for sure! I'm sorry your daughter had to endure a similar experience.

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