Last Treatment and Neutropenic Fever

Two weeks ago (Aug 2nd) Chan had a pretty harsh treatment- a sedation for spinal chemo, VinCristine Chemo to his port, and he started Steroids (which comes with Miralax, and Ranitadine twice daily).  He hadn't had this harsh a treatment since almost exactly a year ago.  I was really stressed out about how Channing would respond to the treatment.  It didn't help that Kindt was out of town and I knew that I would have to take care of all the side effects on my own for a few days.  Treatment days always take a lot out of me, but this one even more so because it was the first time I had left Ellery for longer then a few hours.  And, Jakob spazed out when I dropped him off at my friends house because I forgot to put his lunch in his lunch box (I had his lunch, I just didn't bring it in his lunch box).  Channing did great as usual.  We left the house at 8:00am and got back at 5:30pm.  It had been a long day.  Channing only had some side effects (nausea, a little more tired then usual) and I was impressed by how well he did.

Fast forward to this last Saturday (Aug 11th).  I had been sick that morning, so Kindt had been taking care of the kids.  Chan came into my room for some snuggles in the afternoon and I noticed that he felt warm.  I took his temperature and it was 100.5.  Above the magic number 100.4 where we have to call his Doctor.  I called and spoke to the on call Hem/Onc and he wanted us to go to the ER and get a CBC and do a port culture, along with an IV antibiotic.  In the ER Chan's fever was at a 101.7, but his counts were all within normal range.  So we went home and he was fever free on Sunday and Monday.

Then around 2:00 am Tuesday morning Chan woke up saying he was going to throw up and his fever was back up.  I called Chan's nurse practitioner and filled her in on the situation.  She wanted to do a port culture through the port, and since no where around here has the needles to be able to do a pediatric port she asked if we would come up to them.  So we decided to make a family trip out of it, assuming that we were going to have a port culture and IV antibiotics and head home.

When they flushed Chan's port his fever spiked, which had them worried.  Likely, the bacteria was sitting in his port line and hit full force when flushed.  Also, they were worried that that would mean the port line was infected.  They informed us that we would have to be inpatient for at least 48 hours so they could make sure that nothing grew in the port culture during that time.  They also wanted Chan fever free for at least 24 hours.

Channing really wanted me to stay (he is very attached to me, last week he wrote a note saying "mommy never leave, daddy leave now, lol!).  So we made the decision that Kindt would go home with the other 3 kids and I would stay with Channing.  Before Kindt left I ran to the local store and bought a pump (so I could keep up my milk supply while away from Ellery) and a spare set of clothes for myself.  Kindt was going to come back up with the kids on Wednesday.

Channing had his last fever on Tuesday evening, and was already starting to look better and act more like himself.  

On Wed Kindt called and told me that Jakob had thrown up and had diarrhea, so coming up wasn't an option :(  I was very glad I had a spare set of clothes.  Channing and I spent the day playing in the playroom, playing on the computers, and playing games.  We got Chan's blood results back on Wed and the port culture was negative for bacteria, but his ANC was 483.  If that is below 500 then he is neutropenic.  The Wikipedia explanation of neutropenia is "Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections".  Lots of handwashing, and if Chan left his room he had to wear a neutropenic mask - which thankfully he didn't mind.  

 Playing cars, with one of the Child Life Specialists.






Chan playing his ticket game (ABCmouse.com), which is one of the best educational computer games around!

 One of Chan's favorite things to do at the hospital is to take a bath in the big bath tub :)

During rounds on Thursday we found out that Chan's ANC had dropped 13 points to 470.  The floor Doctor and nurses thought it would be best for Chan to stay until his counts were going back up.  I was pretty bummed.  I called Kindt and let him know and asked he would come up in the afternoon with all the kids and switch me for the night.  A few hours later Chan's regular Hem/Onc came in and and the first thing she said was that we could go home today.  I told her that the Doctors at rounds wanted his levels to be rising before they let us leave, but she said Chan will be fine at home, just don't leave the house without him wearing a mask.  I was SOOOO happy.  I called Kindt and let him know that Dr. Patel said we could go home.  The whole family came up on Thursday and we were able to leave around 5pm.

On Monday we will go to Chan's PCP and get a blood draw to make sure that his ANC has gone above 500 so we can resume normal activities :)

 

It was nice to wake up this morning to all my babies.  Though it is always an adjustment for Channing to go without all the attention, and for the other kids and I to all be home.  And Ellery had finally starting sleeping through the night (about 12 hours)!!  I am grateful for such an amazing hospital and staff who take such good care of not only Channing but all of us.