"There's beeping" (1:58am) (Day 4 Cycle 2)

 

At 1:58am Summer texted Team Summer "There's beeping"  

At 1:59am Summer called Kim. Kim- "Your dad is on his way to assist.  We will be up in a minute!" 

Within minutes, Summer, her dad and mom were on the phone looking for support.  

The first number we called paged/got us to the attending physician at Children's.  He was very nice but a bit concerned as he was not familiar with the pump, nor could he really help us.  As he learned that we were a distance from Boston, his suggestion was "If I were you I’d get in the car and head to the ER in Boston.  If someone calls you back and it cannot be reset/fixedon your own, you'll at least be 5 minutes closer to Boston." 

The next call was to the tech support people at Infusystem. 

Call # - 8003153287 

Serial # 1167282

There we found a WONDERFUL woman who knew exactly what the issue was and began working with Bob and Summer to troubleshoot & reset the device.  Some random data she asked for (for us to keep track of) 

Numbers on the screen. 782 ml 

Rate on the label?  23ml/hour x 48 hours 

As we were trouble shooting with the Infusystem tech, we got a call back from the the paging company trying to see if they needed to connect us with someone else.  All set - back to the infusion tech! (and note, we have to better figure out call waiting on the house phone! haha) 

They reset the device.  Alarms turn off.  The tech asked us to check/confirm that the Rate Setting on the device matched the medication label.  And the numbers were going down which means that the pump was working. ALL GOOD.  Laura asks why did this happen?  The tech was not sure but she would look into the error code for us.  

“Apparently pumps are like cable boxes, just unplug to reboot “ ~Derek

Snuggling with Mom

2:45AM With everyone appearing to be back to normal, Kim & Bob took off to CVS to get meds for constipation:  

3:16am Summer took the following

2 pills colace

2 pills senna

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5:51am Summer texts Team Summer this photo:

With the alarm beeping, back to Summer's room we all go and Bob is back on the phone to Infusion Tech.  Luckily we got the SAME woman who helped us before.  She walked Bob and Summer through the steps to reset the device again. This time Bob also changed the batteries. When he took the batteries out and the alarm kept going. It didn’t stop beeping until he hit the reboot. Current volume is 702.2 ml.  Alarms turn off - ALL SET. 

This time the technician said that she had looked into the error code and it appears to be a software glitch.  She recommends calling Dana Farber as soon as it is open to see about getting another pump.   

Before the tech hangs up, she confirms all is ok. 

-   701.7 continuous 

-   green light blinking top left

-    volume going down 

We are good. 

This time we decide to stay in the room.  Bob snuggles with Summer.  Kim snuggles with Tucker & Dilly on the floor. 

Snuggling with Dad 

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6:35am alarm goes off 3rd time - but this time we were RIGHT THERE.

Bob powered down the device. Summer clamped. They reset the device themselves - alarm turned off. No need to call the Infusion Tech this time.  

When the system rebooted the fluid was at 687.6ml 

 

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7am The Cancer Care team (857-215-0800) opens so by 7:01am we are already on the phone talking to someone who was concerned because it was Sunday and probably no one would be around.  Laura went into Mama Bear mode and insisted there be someone to respond to our daughter - they forwarded us to the attending nurse.  

Charge nurse - Stephen. 

Dana Farber - 7th floor 

Stephen was awesome!  He agreed that they needed to come in so they could take a look at what's going on.  

"The sooner the better. From a scheduling perspective I could take her whenever. " so letting Summer sleep (she had FINALLY fell asleep) as we prepped clothing/a bag to head to Dana Farber - by 8ish they were ready to go.  

Bob and Summer headed to Dana Farber to replace/fix the chemo pump

Summer checks in at Dana Farber 

Day 4 Cycle 2 - Waiting to get the pump checked