First ER experience/scare

So last night we all had a bit of a scare. Following a nice relaxing day at home, filled with our new normal (med struggles, and the like). We were preparing for the night. Gina was getting sofia ready to take a bath, while I was giving Michael a bath. Then, the scare began. Gina came to the bathroom carrying Sofia, telling me in a firm, yet not panicked (so sofia won't freak out) voice,  that we need to go to the ER. I looked up only to see Sofia with blood all over her belly and shirt! So we as quickly as possible got the two kids ready, called the Stanford oncologist and made our way into the car. Being that our daughter is bleeding, and we are not sure how much blood is actually coming out, we decided to go to the closer ER at Good Samaritan. Both of us I think were freaked out, me maybe a little more so than Gina just because I can barely stand the sight of blood. We were admitted fairly quickly so that they could draw blood and cultures to see what would be the next step. This is when it was discovered that the issue was that there was crack/hole in her line. The line that is connected to her port which allows us to administer the at home chemo, as well as draw labs. Because it was not a "closed" line, Sofia was actually pumping blood out of her port which is where the dripping blood came from. So now that we have an understanding of what happened, we find out that we are going to de-access her port, then re-access her port so that we can successfully flush her line. We also find out that the ER at Good Sam does not have Heparin available without the pharmacy having to make it. So Michael and I go home to grab the supplies that we should have originally brought with us, but in all honesty, I forgot to grab on our way out in the panicked state that we were in. As I return, with our supplies, Gina then de-accesses Sofia’s port. 

Now we are waiting for the blood work results, sitting in a room that has now been labeled neutropenic, a mask and gown room only. Sofia is sitting on the bed watching a show on Gina’s phone, and Michael then wakes up and begins to get restless. Because Sofia wants only her mother in times like this (who wouldn’t?), I head out to try and get Michael to fall back asleep. I take him for a drive in the parking lot while Sofia and Gina are waiting for the cream to numb up her chest so that she can then be re-accessed, flushed and then de-accessed. 

This is the point in time where Gina and I both wish we would have driven to Stanford, they have lots of experience with accessing ports, where most of the people at Good Sam just do not. Which is exactly what happened. I am driving with now our sleeping son, when I get a call from Gina saying that they were not able to access Sofia the first time.  She tells me that I am lucky to have not been in the room because Sofia had burst out screaming when the “button” did not go in correctly and was basically just jabbing her. Gina said that she got upset with the people in the room, and they then left a little rattled because they could not access the port, Sofia was screaming, and Gina was upset and letting the staff know they were not doing it correctly.  

Then after another briefly unsuccessful attempt, the third time was a charm. Sofia was accessed, Gina then had to flush with the Heparin because the hospital staff could not, then Gina de-accessed the port. Needless to say everyone was drained from the entire experience and we all got home about 11pm only to eat, administer some medicine and then go to bed. 

We are very thankful that this was not as much of an emergency as we initially thought, and that we learned If we need to go to an ER we should ultimately just make the drive up to Stanford. They are much better equipped to help us and our current needs. 

It would be terrible if someone were to have to access Sofia’s port quickly without any numbing cream and then proceed to poke her multiple times just because they do not have much experience with accessing ports.