Won't do this again

Jo C.

M1; I can only imagine the stress and frustration, once again I am so very sorry. I used to feel as though I needed to be present 24 hours due to such issues with my LO, but that was not logical. So hope that things will get better. Can you write a summary about her capabilities and lack thereof for both the hospital staff and for the MD consultants to see? I so hope she begins to respond to therapy and improves.

And . . . how are you feeling and coming along? Big time important question.

Son David was given high dose IV steroids and it stopped the cytokine storm from attacking his vessels and organs. So relieved. Starting on IV mab drug. Will be able to go home soon but continue IV meds at chemo center for awhile. Bigger response than when he had his first Vasculitis experience two years ago. Seems his stroke was a mild one, but I detect some changes in his personality a bit. However; that could be the steroid effect.

If that was not enough, I am being admitted to the hospital tomorrow. A few weeks ago, onset of heavy coughing and very SOB with ambulating. Thought it would go away, but now much worse. What the dickens. SOB strange with even 30 - l40 steps and coughing like someone is paying me to do it. Going to have cardiac and pulmonary workup - scary. Someone mentioned ruling out pulmonary fibrosis which is really a scary spector to say the least, as in terminal and no real treatment. Am too compromised to run from CT Scan to Pulmonary then Cardiac docs, etc., so hospital one stop shop.

Cannot believe this is happening. What I want is Marta standing guard at the bedside and M1 guarding the door - then I would feel safe. Ha. Prayers are always deeply appreciated.

So hope that your Partner begins to turn the corner into positive area soonest. Once again, please remember to take care of yourself; I know . . .. nag, nag, nag. But we care.

J.

M1

It's a slow slog and I'm about at the end of my rope. Still minimal oral intake-half a vanilla yogurt, a vanilla pudding. And thats if im helping her. Can't tolerate scrambled eggs, mac and cheese, won't touch Ensure. We were talking about moving back to MC tomorrow, they're not doing anything here since no more IVs. They have a sitter at the door who does nothing to help her.

M1

Jo i am so sorry..sounds so very familiar, i am glad your son is better but understand completely the worry about your own tests. please let us know.

I also feel lousy and clearly that doesn't help. Back problem is no better but i can't even have it evaluated for six months so i am living on pain meds which are only partly effective. Am also having issues with the blood thinners and chronic kidney stones (not the cause of the back pain), had to postpone urology evaluation because of the hospitalization. It never rains but it pours. My kids are concerned but not in a position to provide any practical relief. Surely something will resolve itself soon. If we get her back to MC tomorrow i am going to try to disappear for a few days, but I fear that she will be too unstable.

ButterflyWings

M1 and Jo C - keeping you both, and your loved ones in our hearts. The medical system truly is a crap shoot, I am sorry to say. Learned this first hand in the last few years with my DH. To add insult to injury, too many people seem to look at our advocacy as a problem, rather than fixing the insensitive or incompetent practices that totally disregard the humanity of anyone unfortunate enough to be helpless.

It really is absurd as you say, and actually feels almost criminal -- the neglect and technically abuse that happens when common sense and basic compassion seem to be off limits. And these are the professionals we and our LOs have no choice but to rely on. Not always, but all too often we have experienced the direct opposite of "doing no harm". The medical system is on auto-pilot just making money it seems. I pray for better outcomes in both your situations, as soon as possible.

Iris L.

It wasn't like this when I trained. I was taught the science and the art of medicine. Of course, pediatrics is different from adult medicine. Some doctors are trying to be more patient-focused. But where to find them? All the sick are on my prayer list.

Iris

M1

I agree that it's changed a lot Iris. Im wondering if pediatric hospitalizations are different though, everyone expects a child to have a parent with them? But adult wards assume that their patients are going to be able to have agency? Just musing. Adults and children without families are kinda stuck and there's no backup. This remote monitor-AvaSure-was a joke in dealing with a dementia patient.

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Iris L.

Michael Ellenbogen used to talk about businesses being "dementia-friendly". There was an organization that proposed guidelines and qualified such businesses. Hospitals certainly need these guidelines, but you would think they would be at the forefront.

Contacting Risk Management sounds like a good idea.

I wonder how DW developed candida esophagitis?

Iris

GothicGremlin

Ugh. Shots. I think I've had more shots in three years than I have in the last twenty! I have a vague feeling that I'm pouting over this. 😄

I had been thinking of getting my flu shot and covid shot at the same time, but now I'm not!

I just got my first shingles shot today - sore arm and I'm kind of tired. Not looking forward to the second dose, which I guess I'm getting in two months. At least that's how long I was told to wait.

M1

Fwiw gg, the second dose of Shingrix gave me the sorest arm I've ever had from a shot. But nothing compared to what shingles can do. I had no problem getting flu and covid together. But above age 75 i don't think I would recommend it.

SusanB-dil

ooh... @M1 and @Jo C. - I cannot imagine how disheartening seeing them being treated as such. Makes you just want to cry. M1, how frustrating!!!!!!!!

Edit to add: taking the information as a warning for the rest of us to just keep an eye on sooooo much!! (so much we have to watch out for, right)

Also - GG - I had no reaction with second shingrix... so not everyone does - hope it goes the same for you. (I did not get it with anything else)

GothicGremlin

@SusanB-dil - here's hoping you're right! I had a reaction to the first shingles vaccine. It wasn't as bad as any of the covid vaccines, but I was pretty worn out today, so much so that I ended up taking a long nap. I'm feeling somewhat better now.

I'm definitely not going to get any of my future vaccines at the same time.