Holidays in the Hospital

Author: Tiffany Intal

Update: Our HemoMom blogger gave birth to a girl on January 24 at 3:44 am. Mom and baby are doing well. Anjali Noelle or "Noie" was 7 lbs, 8 oz, and 20.5 inches long at birth.

Keeping up with the demands of the holiday season was a tad more arduous than usual this year, since I was due to give birth very, very soon. Not only did my computer crash, but I was left with very little time to write in between juggling holiday engagements, demands at work (yes, I was still working full-time pre-baby), and, of course, tending to the kids.

For almost the entire month of December, all three kids took turns being sick. In addition to a minor inhibitor scare just before Christmas, Niki also ended 2010 with a bang. She developed a high fever—104 degrees, to be exact—and we had to rush her to the emergency room to make sure her port wasn’t infected.

Come to think of it, the past two holiday seasons have been plagued by trips to the emergency room to rule out an infection in her central venous access device (CVAD). A CVAD is a tube that is inserted into a central vein with an external access device that we inject her factor into. Niki had a Broviac® catheter installed when she was 5 days old so we could perform her infusions and lab draws at home. If the CVAD isn’t kept completely sterile, bacteria from the device can get into the bloodstream, causing a central line infection, but the benefits of prophylaxis outweighed the risks of having a CVAD.

Central Line Infections

In case you didn’t know, central line infections are no good. They can be life-threatening if they aren’t caught in time. A fever could be the first sign that something is amiss for patients with CVADs. This means patients with CVADs, such as ports or catheters, can’t take fever reducers for typical cold or flu symptoms. It could dangerously mask a high fever. For Niki, a temperature of 101.5 degrees or above warrants a trip to the emergency room to rule out a line infection.

All was fine and dandy with Niki’s Broviac catheter until she was 8 months old in October 2009. It seemed she caught every cold and flu bug imaginable because she developed a fever all the time. There was a time that John and I would rush Niki to the emergency room at least once a month! We would take her in for blood cultures, and then she would receive a two-day course of intravenous antibiotics.

At first, I was terrified that Niki would have a central line infection with each and every trip to the emergency room. As time progressed and the frequency of our visits increased, the emergency room became part of our monthly “thing.” Order infusion supplies? Check. Call the pharmacy for more factor? Check. Go to the emergency room because Niki has a fever again? Check. John and I often had Niki’s baby bag packed and ready to go with clothing, diapers, her protocol card and our “mobile hemophilia treatment center.”

I got used to Niki’s high fevers being a false alarm, but John and I had a serious reality check this past June when Niki’s Broviac catheter actually did become infected. She was hospitalized for a week, and her hematologist decided to switch to a port immediately thereafter. Ports provide the same direct access to the vein, but the device is housed completely under the skin. Niki had port surgery in July 2010.

In Love With the Port

The idea of poking Niki took some getting used to, but we eventually fell in love with the port. Despite still being prone to catching common colds, Niki was miraculously able to get sick without crossing her fever threshold. I don’t know if there is any real data to support this, but it seemed she was less prone to getting full-blown sick with her port. Suddenly, we went from monthly emergency room trips to no emergency room visits for six months. Life seemed somewhat normal again.

Thankfully, this last emergency room visit was not a central line infection. She was discharged the afternoon of New Year’s Eve, and we got to ring in the new year at home. Even though she was hospitalized for the last two days of 2010, I’m looking forward to another year of less-frequent emergency room visits in 2011. Switching to a port was the best decision we ever made.

Read more about Tiffany's life at The Art of Lion Taming.