Updates - Cardiology, Dermotology, and ENT

My son has SO many specialists... ENT, Dermatology, Cardiology, Oncology, and of course the regular Pediatrician.  Chan has had a lot of medical stuff happen in the last few weeks so here is an update on it all.

Channing has had a full body rash for about 3 months now.  It causes him discomfort and itches a lot.  We have been treating it with cortisone cream and benadryl when it flares up.  On Wed (the 2nd) we went into Chans pediatricians office and he referred us to a dermatologist.  While their they noticed that Chan's heart was beating irregularly and slowly (60 bpm).  They did an ECK on him and it showed that his rhythm was abnormal, and that his heart was beating abnormally slow for his age.  We have known that he has a slow heart rate but it never really seemed to be an issue.  Chan's ped decided to send it to a Cardiologist in Madison to look it over.
On Friday (4th) we saw the Dermatologist and were given a more aggressive topical cream that will hopefully improve the rash.  After two weeks if little or no improvement is seen then they will take biopsies of the infected areas to test.  The Dr.  thinks it is a cephalosporin allergy which means Chan would be allergic to any cephalo- medicine.  Cephalexin,  and cefdiner being ones he has had more recently with his more recent ear infections and fevers.  We will know more after he speaks with Chan's oncologist and at our appt in a few weeks. 

This Monday (6th) we went to Madison to see a Cardiologist about Channing's heart rate.  This was in response to a very stressed out mother on Wed evening calling the on call hem/onc and asking them a bazillion questions, and then again calling on Thurs to talk to our regular onc about the situation.  They then got in contact with the Cardiologist and set up an appt.  Tangent:  I am SOOOO grateful I can call anytime I have questions, or am stressed, or worried.  Anyway, Everything at the Cardiologist looked good.  The echo cardiogram showed that in function and size the heart was doing exactly what it is supposed to, and that it matched his echo from diagnosis (almost 2 yrs prior).  That was very reassuring.  The Cardiologist also said that in order to have an average heart rate kids have to be all over the spectrum so Chan is just on that lower end.  I asked if there could be any reactions from a medication and the Dr. said that zofran (his anti-nausea med) is the only one that could possibly cause slow heart rate.  They still wanted to watch his heart rate over 24 hrs in a 'normal' setting so they put a monitor on Chan and he wore it for 24 hrs.  Chan was actually sad when he had to take it off.   Hopefully we will know the results of that in the next week or so. 

Chan has a surgery scheduled on the 18th of Jan for ear tubes and adenoid removal.  They are doing it at the same time as his spinal chemotherapy so that we only have to do one general anesthesia as opposed to a sedation and anesthesia within a few weeks.  The hope is that the tubes will help with the ear infections he has had a multitude of lately and that will then stop the inpatients.  The last 2 inpatients were due to neutropenic fevers related to ear infections. 

Yesterday, Chan had his pre-op appt for his surgery next week and his heart rate was up to 78 bpm.  I thought a bit about this and realized that Chan hasn't had any Zofran since Monday morning about an hr before his Cardiology appt.  So, today, I did a little bit of research on Zofran and the possibility that it could cause low heart rates.  There is a very low possibility of over time Zofran causing QT prolongation, which could be what Channing is experiencing.  I called Chan's oncologist and asked and the NP said that they have heard that it could cause it but they have never seen it.  We then discussed other options for nausea control since I don't feel comfortable giving Channing Zofran anymore.  I feel a WHOLE lot better about it all now.  I feel like there is a big correlation between zofran and Chan's heart rate - I had given him zofran an hour before his appt last wed when they noted the heart rate and an hour before his Cardiology appt.  And had not given it to Chan in the 24 hrs before his pre-op appt where his rate was normal.

And randomly shoved into this post here are some statistics I found on things Chan has experienced...
You never worry about those low statistics until it happens to you.  Now, I will look at all of the .03 % experience on all of the labels of Chans drugs...
The probability of someone having a heart reaction to Zofran is very low...
The probability of having identical twins - .03%
The probability of a child between 0-20 developing Leukemia - .033%
The probability of both twins (one with Leukemia) developing Leukemia  - 20%
Here's hoping that the statistics start looking in our favor especially when it comes to Jakob...

Inpatient Dec 12-14th

Kindt took Channing to urgent care, Wed the 12th, because he was being super whiny and annoying. Seriously, his only 'real' symptoms were that he was acting out and having to go in time-out constantly. He was diagnosed with a double ear infection and sinus infection.... At least there was a real reason for him being such a goober.  

When they got home Channing was exhauted and climbed right into bed at 7pm.  I went in a checked on him a bit later and he felt warm to me.  I checked his temp and he was 102.7 :(  I called his onc and let them know we were headed to the ER.  At the ER they did a CBC and his counts were so low that they thought it was a diluted sample.  So they re-did the CBC (it takes an hour to process each time).  And sure enough they were really low.  Which meant he was neutropenic and had a fever which is an automatic inpatient stay.  Since we were already in the ER they wanted to take Channing up to Madison in an ambulance.  Not entirely sure why, but I believe its because its easier for them to transfer the patient then discharge and re-admit, and I would have to sign a waiver in case in my transport something happened. 

Chan was a little nervous about the ambulance ride but enjoyed it after the first 20 mins or so. 

I was really worried I was going to get car sick because riding sideways in a big truck that you feel every bump in can do that to a person.  Thankfully, I didn't.  It helped that I was worried about Chan and the EMT kept me talking the whole hour ride.

We arrived at our room at the Children's hospital at 2am.  Then hooked him up to an IV with antibiotics and fluids and we had drs. and nurses come in for the first hour then we slept.  Chan and I always share a bed :)

Sadly, we were in isolation which means Chan can't leave the room.  We did lots of crafts, and watched lots of cartoons.  Also, a school teacher came in and worked with Channing for a half an hour both Thurs and Friday morning.  Channing enjoyed it and I was able to have a little time to myself. 

On Friday (14th) at rounds (morning meeting with all the people who work with Chan and the parents) they decided that if all went well through the day we could be discharged that evening.  Everything was good, white counts had risen, no fevers since Wed evening, and all cultures clear of bacteria so we got to go home!

Now, since Channing has had 2 recent inpatients due to ear infections we have decided to have tubes put in his ears.