Tuesday, February 8, 2011

A day at the ER

We had a bit of a scare yesterday when I received a phone call from Haven's dad that she had complained of chest pains two different times at school. She didn't want to come home but instead wanted me to bring her some medicine to make it stop. I don't have medicine for chest pains......

What is more important about the chest pains is that Haven doesn't feel pain - so when she does we know it's serious. I called her Pediatrician who told us that she wanted Haven in the ER asap to have an EKG. She didn't have the equipment at her practice.

PS: I will never go to an ER for Haven without an appointment first. It is so easy to sit there for the 7 - 8 hours if you aren't wasting 3 - 4 hours in the waiting room!

Haven's pediatrician called the ER and I sent an email to her Oncology doctor. He also called the ER to let them know we were coming. We got there and her room was ready and all the doctors were up to speed on the Neuroblastoma and ROHHAD.

This is Haven with a nurse she used to have at her Peds office. They hadn't seen each other since 2009 when her nurse was transferred to the Children's ER at Hopkins. It was so awesome to see her!

Haven had the EKG as soon as we got in to the room. Then they hooked her up to the heart and respiratory monitors. I requested a pulse ox to watch her.

Then it was off to chest x-ray.

She has a beautiful heart and the lungs look great. I am very sure her inhalers are working. The doctor at the ER let me see the x-rays from January 3rd and compare. These look much better.

Next it was time for labs. Haven always monitors the nurses when they are getting the port supplies out. She makes sure they have the correct needle and vials before putting it in to her chest. Unfortunately, no one accesses her port as good as her nurse Katie. But she did well.

Time for the flushing. Haven flushed it and put the Heparin in all by herself. She likes to do it because if the nurse puts it in too fast she can taste it and according to her it's disgusting!

Her sodium levels and cardiac enzymes came back great.

In the end everything tested out fine. Obviously with ROHHAD and her chemo it's not good to tempt fate with the heart and a cardiac arrest is very possible in our children. The fact that Haven felt the pain is more important - since she just doesn't feel it like a normal person.

She will be seen back in Cardiology next week for another EKG and the heart halter again. She will also be back in chemo next week and have a thorough exam with her Oncologist.

To end out the long day and evening Haven came home to wiggling her tooth. Within 30 minutes of wiggling and pulling the tooth was out and she was ready for bed! Tooth fairy was put to work!

Somethings are perfect when you don't feel any pain!


  1. Marilyn in FloridaFebruary 8, 2011 at 8:15 AM

    I'm so glad you are feeling better. I was thinking about you all day and evening. How cool to have a visit from the Tooth Fairy!!

  2. Dear Misty,

    It's wonderful to know that everything checked out fine with Miss Haven. I pray the results from the appointments next week will be OK, too.

    Please tell Haven that I said hello and that I'm glad that she had a visit from the Tooth Fairy. Haven needs to give my grandson, Lane, lessons on how to pull a tooth. He has one that needs to be pulled.

    Still keeping Haven & family in prayer.

    With prayers & best wishes,


  3. Just found your blog because I was searching for NB blogs and sites information. My daughter is 3 and also has NB and was just diagnosed 12/23/2010.

    your daughter is beautiful and I have her in my prayers.


  4. Thank you so much for posting.
    I know you keep abreast of NB news and was wondering if you had seen any other news related to this article?
    They talked about researchers who appear to have identified the genetic markers associated with neuroblastoma. Keep posting and fighting the good fight!