THAT CAN'T BE GOOD...

Just a quick note to top off all the drama of the week. As I went to draw labs yesterday (Thursday), I discovered that her clave on the end of her Broviac catheter was left off. Kristin said, "I didn't do it!" Of course not, but there was no way I was going to flush it like that for fear of sending bacteria straight into her bloodstream. I don't know if that is possible, but I did not want to risk it. So I called the clinic at Renown because our Oakland Docs were in town still. They had us come right down and they did blood cultures and gave her some more fluids. She is still feeling poorly. It has been my experience that no news is good news when it comes to culture results. It is mid afternoon Friday so I am hoping all is fine.

It has been made known;and not very ethically I might add, that some Doctors do not want her on the peds floor anymore because she has turned 18....( yes, a doctor came in the room while I was gone and told Kristin he would not treat her anymore because she is now 18) Why cannot people be flexible? Evidently the peds doctors have a policy to not treat patients after they are 18. Why would you change a patients caregivers in the middle of their treatment, especially one as long as Kristin's, because they are suddenly a day older? So, where are we to go when Oakland is so far away? Do you introduce her to a new adult oncolgist who is completely unfamiliar with her protocol in the middle of this very intense phase? Pediatric cancer protocol is a completely different "beach" than adult cancer protocols. This is one of the reasons for the great successes they see in the cure rate of childhood cancer.I wonder how some of these docs would feel if this were a member of their own family?

Comments

Anonymous said…
Oh, Leslie & Kristin! I am so sorry this has happened. Your story about the things with Renown make me shudder. You're right - they'd better figure this out; the idea that Kristin could not get the treatment she needed when she needed it because of bureaucratic snafus is just ridicuous and unacceptable!

They need to understand that, unfortunately, these serious childhood illnesses do not magically stop when the patient turns 18. If we could magically make them stop, we would do it long before 18 rolls around!

Our thoughts and prayers are with you - hang in there!
October 19, 2008 at 6:08 PM
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