Rinse and repeat! More hospital stays and drama, ugh.

*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

Yeah, no!

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! ❤

8 thoughts on “Rinse and repeat! More hospital stays and drama, ugh.

  1. I don’t even know what to say. There was absolutely zero reason for the staff to treat you and W that way, it’s horrendous. Once you have things under control with W, maybe file a complaint? They were negligent, at the least.
    Medical staff like that really have no business in healthcare. Why are they in those jobs if they aren’t compassionate?? It really infuriates me.
    *massive hugs* I wish I could help.

    Liked by 2 people

    1. I know you’ve dealt with your share of nonsense as well, I figured you could well relate, sadly!

      Not sure if a complaint would go anywhere, I have the same issue with my GP you likely remember and with W’s old pediatric mental health doc as well.

      His adult doctors however have all been really good, the ones here on the cancer ward and at Sick Kids are very compassionate and willing to help and advise with all things.

      I’m not sure I have the fortitude to go back and deal with the fools, I’ve informed all the doctors that count and none of them will be taking any chanced from here on. The only thing left for me to do is go back to finding a new family doctor – but that’s an issue for when I have time and energy. All goes to W right now 🙂

      Liked by 2 people

      1. I realize you’re focused on W and I hope I’m not coming off as being pushy or callous. I’m angry on yours and W’s behalf, is all.

        Oh yes I remember that. It sucks when there’s no nearby options and the only one available can’t be bothered to actually treat their patients. UGH.

        You’re right about the complaint (and I know you have zero spoons for it right now) I just hate how they get by with treating people like crap. It’s enraging and doctors and nurses like that do not deserve their jobs. 🤬 I had one that, after screwing up several times, decided he was going to retire…only to change to a new location and then ask for my records so he could continue to treat me. The nerve! My sister had a hematologist who nearly killed her because he didn’t believe her diagnosis–from a specialist–was right. Mom didn’t file a complaint because she didn’t want my sister to get blacklisted from hospitals. (I’m not trying to compare by any means. I’m sharing in hopes these help you feel less alone with the medical staff bullshit that happens sometimes.)

        I’m glad his adult doctors and Sick Kids are better. Hopefully, as medical professionals with a lot more pull and insider power, they will be able to read the hometown doc and nurses the riot act for their poor care and flippant attitudes. Good docs tend to be pissed when their patients aren’t treated well and usually don’t hesitate to let it be known. In the meantime, here’s to W getting the treatment he needs and kicking cancer’s ass. *hugs*

        Maybe, once W is doing better and you have a moment to breathe again, you could as some of his adult doctors if they have any recommendations of good doctors for you. That’s how I found my gynecologist, she did her residency with my oncologist and he told me to switch to her if I could. Something to keep in mind when things settle down and W is on the mend.

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    1. Yeah my town pretty much sucks for most things, I can’t tell you why but it has long had the reputation of being rude! This is beyond rude but fortunately I have tough skin and just keep pushing when needed.

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  2. With it being Saturday morning here I’m hoping you’re all home and as well as you can be. Things always feel better when you can sleep in your own bed, away from the dongs and bleeps of a hospital.

    Fingers crossed for a smoother patch, and a much needed rest, before Sick Kids. 💚

    Liked by 1 person

    1. I hope so, while in hospital we got word that we are enrolled in the lodgings for Sick Kids starting Wed the 25th!! Yikes, I guess we better start packing …. :O

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      1. I am so, so pleased for you all that he’s been able to enrol there. One mum to another, my heart goes out to you. We’ve had harrowing times, but they’ve been quick turnarounds, and you are so brave, so strong. He’s lucky to have you fighting in his corner.

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