John's Home take....Yeah I've lost count!

[Hammy8241]

Nearly a week at home Stephanie and I hope that you both are settled into a happy routine - You in the kitchen making Jam Roly Poly, John asking for more custard !

Take care both.

[Stephanie78]

Jack-
The reason Johns hospital stays were not shorter is due to the fact that we voiced our opinions. We made it clear that we did not want him going home until....(whatever reason, maybe pain free or cough gone etc...) Here in the US you have to basically be on your last leg to even be admitted into the hospital. Remember my past posts, John was seen at our local ER two different times (Once he couldn't walk and bleeding out of eyes, nose and ears the second his oxgyen level was in the high 80's) And for him to be in ICU for 4 days...well that meant he was REALLY bad!
It's pathetic that we pay such high costs for health care (insurance, copays, and deductibles) to get the care that we do. Now I can't complain about Johns care at UNC because his doctors are very attentive and have really taken good care of John. But in my honest opinion, looking back at his recents hospitals stays, I believe he should have been kept longer the first time and monitored. Maybe then some of the worse effects could have been prevented or atleast tended to before they got so bad!
Towards the end of all hospital stays, John gets very quiet and emotional. He gets scared that once he is gone home that something will happen and he will not be aware of the seriousness of it and it will land him in the hospital in worse shape.

[Stephanie78]

Frankly the hospitals in the US (not sure elsewhere) seem quite inconsistent. Some appear to be significantly better than others. I had very bad experiences in the ER in both major hospitals in Columbus, Oh last year. Since they didn't think I looked all that sick they left me sitting for an EXTENDED period of time before even talking with me.

That's the problem. When a person has Wegners Granulomatosis, you don't neccessarly LOOK sick. (although the past visit John looked horrible due to his hemoglobin being so low). But to look at him laying in ICU you would never imagine that he was as sick as he was. I've noticed that once you start eating or walking around the unit they are pushing the discharge. Sadly enough sometimes you have to act SICKER so they will let you stay LONGER. I think that their are Drs who are very well educated with the disease HOWEVER being educated does not give them knowledge on what it feels like to have it. Therefore when they see that the bleeding has stopped (even though you feel horrible) they assume it's time to go home. In most cases though, it's too early!

[Stephanie78]

Hospitals really vary. I spent a lot of time in Flagstaff (AZ) hospital, which even though it's a regional trauma center is still a small hospital. My care was excellent, particularly in the ER. The doctors didn't generally know what to do with me, but they knew that they didn't know. LOL

At JHU, my ER experiences have been pretty awful. I've never been seen in less than 5-6 hours, even when I was coughing up blood with a known history of lung hemorrhage. When I needed to be admitted, I've never gotten a bed in less than 12 hours. They are enormously overcrowded. When you do get admitted, the doctors are excellent. The nurses aren't so great-- too few, I suspect.

The one thing I can say about UNC hospital....John is seen as soon as he walks in. I guess with it being the hospital that studies this disease in particular, they are quick to get him back. On one occasion we had to wait for a little while, however it was a CRAZY night. Once back in a room they realized he needed help STAT. However when it comes to admitting him, he has to wait several hours. BUT they do every test on him possible, have the drs who will be caring for him on his regular floor come and meet with us and even offer an extra bed for me to lay down on. This last visit there was not 10 minutes that he did not have a dr in the room with him (And that was over a 8 hour period of time).

[Psyborg]

It's good to know that UNC is at least taking good care of you guys. You've been through enough already.