A quick update:

Well, I haven't posted since I was in the ER with Brendon....

since his day at the local ER: two days later we were at an ER an hour away...much better care!

Then he was out of school the rest of the week, one day included an appointment with the electrophysiologist.

So, he's had a heart monitor since the first week of January and will continue to use it until February 6th.

Also since then Bob had chemo and again no Bleo....but the nurse went to get a blood return and he felt a pop, came off the chair and was uncomfortable the rest of the day - and the next day....we ended up back at the oncologists office, then 2 days later ended up at the hospital where they found that when the nurse pulled back they actually looped his tubing on the port....OUCH! So, we are now waiting to hear back from the oncology office to see if he will need another surgery or not.

I have a bit of a tickle in my throat so I'm heading to bed...besides...almost 10 p.m. and 4 a.m. will be here very soon!

Thanks for the continued prayers of our friends, families and the perfect strangers who are kind enough to care.

Hoping for a warm day soon so I can jump on the Trek and go ride a good 25 miles and just enjoy and forget for a little bit!

Happy Riding!

A Day in the Kishwaukee Hospital E.R.

Yesterday at 10 a.m. I walked to the bank to do the deposit for work. As I was walking my phone rang...815-754- xxxx, which is almost always a school number. I thought perhaps Cassy telling me that she missed Caiden or some such thing. Instead it was the school nurse at the grade school that Brendon & Cody go to.

Brendon was in the office, crying, complaining that it felt like someone was squeezing his heart. So, I called Bob, told him to pick him up. Called the pediatrician who said to take him straight to the E.R.

When he got to the E.R. he was also complaining that he had shooting pain in his right arm (upper) and he was shallow breathing. They get us back into a room immediately, the nurse comes in, logs all the information, and hooks him up to the monitors.

As I'm watching the monitors his BP is 67/50 and his heart rythmns seems very "abnormal" from what you normally see on the screen....

1 and a half hours later the doctor walked into the room. He proceeds to listen to his heart and then say he's going to have an EKG and a chest x-ray done. At this point, Brendon's breathing and heart rythmns are looking normal.

After the tests are done he comes in and tells me that he looked over the tests and everything looked good. So, I asked for a copy of what had been on the monitor the entire time from the moment they hooked him up until that moment...he asked why...I said because his heart rhythmns did not look normal when he was first there. He then said that the heart rhythmns have nothing to do with the stenosis that Brendon has because the rhythmns show the electrical function of the heart and the stenosis is about the mechanical functions of the heart....so, I said then why would you do an EKG which is a test of the electrical pulses in the heart...he said that it was standard...

I proceeded to tell him that I didn't feel my son was given any kind of emergency care! He came in presenting with chest pain, shooting pain in his arm and shallow breathing and they took an hour and a half to look at him, which was about an 2.5 hours since the symptoms had started and were apparently resolving by the time he had gotten in there to see him.

I then asked why they hadn't done an ultrasound of the heart if the stenosis is mechanical and the ekg shows electrical function not mechanical function...he couldn't answer that question...then tried to psychoanalyze me saying "I think your frustration is because we don't know what caused this episode." I replied "No, my frustration is that you sit here telling me you did NO tests to distinguish what was happening to him and that you didn't bother to see a 9 year old, with a history of heart problems who presented in your ER with chest pains, shooting pains in his arms and shallow breathing until he sat in a room for 1.5 hours without any medical attention and then you sit here trying to b.s. me to get out of being held accountable for screwing up!"

He had nothing to say to that so I then told him that I'd be calling the administration the following day to complain about the care as they had no business billing me or my insurance for such pathetic, substandard care.

The poor discharge nurse was scared to death to come into the room. Not her fault, but the service there was horrible...then they said if he began having chest pains again that I should bring him back...I asked why, they said so we can care for him...I said "Like you did today? No thanks, I'll drive an hour and get him care elsewhere!"

So, it was a frustrating day!

Today we are off to Chemo and Brendon will be with us so that if his cardiologist can fit him in I can run over there with him today.

Have a blessed day!

Sometimes you just need to breathe...

which is exactly what we did last night. It was New Year's Eve and we went to Four Seasons Sports with Bob's sister, Brenda, his mom, Bonnie, and his sisters friend, Julie for Glow Bowling from 10 p.m. to midnight. We had a blast! Lots of laughs and just some time to relax....

As our Cody (the youngest in our family at 9 {having been born 16 minutes after his big brother Brendon}) said...."Isn't this great, Mom? We can just have fun and not be so worried about dad...you know, the cancer and everything." I almost broke down and cried when he said this...but he said it as good as anyone else could! And, he was right! It was nice to have a few hours where we didn't think about anyone being sick...we just had lots of laughs and lots of fun!

At midnight we drank sparkling grape juice together as we rang in the New Year.

Cheers!