*long one* be forewarned.
So we’re here again! Two weeks after the last admittance and we are once again back, in the same room even! lol Almost think we should have just moved in ….
Some back story to the last few weeks:
W was admitted 2 1/2 weeks ago on a Tuesday to our usual hospital for cancer treatment because his numbers/bloodwork was just horrible. He needed chemo and other products to get him back to stable and ready for Sick Kids in a few weeks for the CAR-T therapy. We did that, then went home the following Sunday afternoon.
Our doctor here had requested our family doctor back home take charge of the case and have blood work and transfusions done in our local hospital until it was time for Sick Kids. I was hesitant but it did offer much less travel and much more time at home for W and for us. He’s having a hard enough time physically so anything to ease the wait time was going to be great, right!??! lol
First off the Oncologist’s requests (and mine of course) for call back and set up of times and dates was never answered. I got a call from here telling me the appointments were being cancelled as they were to be handled in my home town. I said, no please don’t, keep the dates on schedule and I’ll call you back once we get booked here because frankly I’m afraid they won’t come through. Guess what, they didn’t!
Unfortunately, me thinking all was set and settled was silly enough to get in the shower. The phone rings, W takes the call and agrees to cancel the appointments since he is told that they are to be done at home. *PANIC TIME* I call back trying to get them reset and explain that I have yet to hear anything from my family doctor and he needs his transfusions on time. I’m afraid they will get missed …. so now nurses and practitioners are scrambling trying to get him set up again because those other times have now been filled for others. UGH!
This is now Tuesday afternoon, still no call back from our home doc …. I’ve left messages, the oncologists here left messages the Friday afternoon before! The practitioner working with our oncologist has phoned and left messages many times as well. *crickets*
Fortunately they do squeeze him back onto the schedule – that’s the Wednesday they realize how low his numbers are and he’s there all day with dad getting things stabilized again. In the meantime Dr. D’s clinic (oncologist) works with me to set up at least one more week of appointments in hopes of setting things straight here in our town by then.
FINALLY!! The damn family doctor calls back. It’s now been over a week since the specialists reached out, Apparently cancer and no immunity plus requiring stabilization for a major procedure in one of the best hospitals anywhere is just NOT ENOUGH to get his attention and response. With all those letters and names not getting responses, what chance do I have???
Explains why my chronic rare condition gets no help either, humm. But that’s for another day.
Anyway, finally we get a response, keeping myself patient and respectful, I take the calls, get the info and set appointments. Cancel with the regular oncologist and move forward. Monday we go for bloodwork, depending on results we will be back Tuesday for transfusions. Pretty much expected at this point, no biggie.
Monday we go in for 8 am. Monday by 10 am I get a call that the transfusion can’t wait, come in this afternoon, there is a 6 hour wait to get the blood products he needs but they are on the way. Okay, no problem we can do that … but wait, W has started with a nose bleed and heavy bruising again, that plus his blood counts … 4 calls later and much back and forth with the oncologist – my family doctor says we need to bring him in now. He must be isolated and we must stop the bleeding! YIKES, more panic, off we go.
To emergency he says, I’ll tell them the issue, go now! When we get there it’s packed, of course. All sorts with germs everywhere! I explain to the nurse, i explain to reception …. take a number! Umm, he needs to be isolated, she checks with the person behind the glass, take a number, I guess you can wait in the door way …. :O What Now???? Come again?
He has cancer, he has literally no white blood cells after chemo so no immunity, and no platelets so he won’t stop bleeding ….. plus the doctor told me to come here asap, that he would tell them he need to be isolated! … take a number….. *fumes*
50 minutes later, after moving him about in a wheel chair inside and outside trying to stay away from all the coughing and sneezing and germs, they finally call him in. His nose has been bleeding heavily this whole time. Lots more stupidity like this later they get him a bed in the ER.
No precautions really but at least there is a curtain, sort of closed up around us. W unfortunately over hears one talking to another saying that he’s just here with his mom, she babies him ….
Finally the family doctor shows up, all of a sudden he’s in full protective gear, triple masked, triple gloved etc and still keeps his distance because he doesn’t want to make W sick. I’m guessing our oncologist read him the riot act over the length of wait for his original call back so he finally gets the urgency. Some of the nurses though aren’t quite up to speed I don’t think. Pretty sure it was after that when W heard the comment
Big surprise, after hours in this mess W spikes a fever! I finally got his nose to stop bleeding but they didn’t let us leave despite my saying he would be better at home to wait for the needed products, safer. And now this …. shit hits the fan, I guess they finally realize I wasn’t the one in the wrong.
Two, yes two units of blood have been lost from mornings lab work to now. That is how much his nose was bleeding. Damn fools. The ER doctor didn’t quite believe it, many tests are ordered to try to figure out where else he may be bleeding from. Nothing, maybe she does believe now, anyway.
We go from the ER to the ICU, await blood from all over hells half acre … hours later, 4 more units of blood he needs to get stable! YUP totally babying him, yup totally fine to stay in the waiting area for close to an hour. For F*CK sakes!
The following day we are told he is getting transferred back to the usual hospital, they are better able to treat him and ‘home’ doesn’t have the knowledge or resources. The first part I could have attested too earlier! So here we are again.
Been here since Tuesday, we decided to drive him here ourselves and get released from one hospital without waiting for transport. We would have just been stuck in the ICU with all the other sick people until likely midnight or longer. Not a waste of time we wanted, or risk for that matter. We wnet home, grabbed a few things and were admitted here by 6:30, we had left the other at 4:45, not bad turn around if I do say so myself. The trip itself is almost 1 1/2 hours.
It’s Thursday now, we should hopefully be on the way back home Friday afternoon. You’ll never guess what, they want follow ups done here, not in our home town ….. 😛
At least here he is safe! Got word tentatively that we will be going to Sick Kids next week anyway. Scary and exciting at the same time. The procedure is dangerous and the first 2 weeks after will likely look very scary I’m told but that should then change for the better and the rest of the stay for follow ups there will be as outpatient, set up in our own private little apartment close to the hospital.
*exhale* long post I know, lots of stuff not even covered but here are the highlights.
Till next time … be well! ❤