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Setting aside the minor issues we have had with CHOC, some major issues have also happened and some have just been revealed to me as well.
In regards to Joey, they gave him 2 medications without my consent... 1 not being medically necessary. The 2nd the had opportunity to discuss with me and did not (his phosphate levels were high and had to be brought down and they knew in early morning but no one told me about it until I questioned a med I saw them giving late night). They placed him in restraints the first night we were here for 2 hours, most of that time he was asleep. They put the restraints on for conveniece within 10 minutes of me leaving the hospital to get his things and only removed them when I got back ebcause I insisted they were not necessary. We've also had at least 1 instance I have caught where a chemo drug that HAS to be filtered during administration was not filtered and I didn't catch it until 1/2 way through the infusion.
Now the other issues that have come to light involve care of other children here, but ones I am close to and trust completely... my "group" you could say. The biggest issue being a girl we became friends with and saw the day she was admitted back in July. She never made it home. Her death was caused by medical error... too high a dose of chemo and given at an extremely high rate. It was her 14th round of chemo so there is no excuse to give her such a high dose.
Another child here who we are close to has also had some pretty big medical errors but none resulting in death. The error in that case was trying to give a medication that is known to be life threatening to this child. Luckily mom was there to catch the error before it was too late.
I want to transfer Joey. I fear for his wellbeing, for his life. DH does not want to transfer because of continuity of care. We plan to make a decision today.
If you were in my shoes wouldn't you want to transfer to another hospital? To know 2 of the 3 families I am close to have had such serious medical errors, one costing the child her life and the other could have had mom not intervened. The 3rd family I know has not had any issues, but mom is a nurse and they seem to be more cautious with them.
I've been keeping up on the CB and I think if you are going to transfer him, you should go to the best LCH docs there are, even if they're far away. You can stay in a RMH. I wish you all the luck in deciding what's best for Joey's care. I also think that you have to be able to trust the medical staff with your son's life. If you don't, then something needs to be done.
We had a long talk today and will have one more meeting with the safety officer tomorrow. Because of the rarity of his disease and the fact that a transfer to Houston (best LCH docs) isn't possible, we aren't sure what will be best. This case is complex, with many issues. But if we can develop a good strong and solid safety plan, DH won't let him be transferred. And any transfer while on chemo can be dangerous, especially the drugs he is getting. Add in the pulmonary issues and we're walking a thin line. I meet with the safety officer tomorrow who is the head of safety for the entire hospital, including pharmacy. If we can come up with a good solid plan (I have a list of all meds and doses including chemo, the rate at which chemo is run, etc... and his meds - esp chemo - and rate of flow are checked by 2 nurses before administration, then DH wants to stay. I of course would check myself. What happened with the girl here was that mom didn't check her dose and the nurses just took what came from pharmacy and followed the directions. There was a typo on the directions from the bag, which is what they follow. And the dose was too high, but was clearly marked on the bag what the dose was. Since mom didn't know at that time what her dose or rate was, she didn't think anything of it until after she looked at records. By having me know the dose and rate of flow, and it being checked by 2 nurses, and myself, it avoids this error. I do have this info, but I want to confirm it as well.
Ugg, I really don't want to stay, but Miller's doesn't have an LCH doc, though they have treated it. SO DH says if we can come to an understanding and a solid plan, then he stays.