Waffle me discharge

It's been a weird couple of days. Been getting a hard and fast lesson in how hospital life can be. Looks like Dr. Wexlar spoke out of turn a bit on Wednesday about the Bone Marrow transplant and my imminent discharge. After speaking with him for quite sometime wednesday night, I emailed my nurse coordinar, kind of like the liason between Dr. Baer and myself, asking for some clarification on the matter, particulary timing of the bone marrow transplant process and follow up. The Nurse Coordinator emailed me back in the morning and said she's be over to talk to me about everything. She seemed concerned.

When the nurse coordinator showed up the next afternoon, she said she was quite surprised I'd heard such a definite decision about the Bone Marrow procedure, as she had been talking to Dr. Baer that morning and the good Dr. has been doing some research on the very fact of when or even whether such a transplant would be implemented. Apparently I have a rare form of ALL, which does not necessarily place me in the risk category where Bone Marrow Transplant is prescribed. Because my disease is rarer than the average ALL, Dr. Baer has been searching for supporting evidence of what to do with me. Hence, the surprise over the opposite opinion being told to me by Dr. Wexlar, as Dr. Baer doesn't even quite know what to do yet. It may be that I go through the whole of my chemo and not have a transplant. I may go through only part of the chemo. What the nurse coordinator made clear to me is that decision has not been made yet, and really won't be made for a couple of weeks yet, or perhaps even longer.

For the future, the nurse coordinator/liason told me this: Major decisions about my case are made only by Dr. Baer. She is my attending physician and all of those decisions go through her. Other physicians are on the case in her absence, but it's Baer's show, and she decides the biggies.

All this has been compounded on the fact that on Wednesday night Dr. Wexlar told me my blood levels were rising and I was going to be discharged today. Well, on thursday my White Blood Cell count dropped to .29. I was told then that I wouldn't be allowed to leave until Saturday. Fine. Today, I was informed that the white cell count dropped again, to .26. Argh! After telling me that, Dr. Wexlar finally said that they are not going to make any more predictions about discharge, that I will be discharged when my blood levels rise again, and to just plan on being here until that happens. This statement of course would have been fine in the first place, had the doctor not raised my hopes of leaving and maybe actually going home to Vestal for a few days well before I thought possible. As of now, I don't know when or whether that is going to happen at all.

It wasn't like they were kidding around about discharge, either. Preparations were being made. In the past couple of days was dropped off what must be several hundred dollars worth of the drugs I am to take once I go outpatient. A home health nurse met with me yesterday and showed me how to purge my central line out with these special Hepharine shots, as well as showing me how to change the dressing and other accoutrements that go along with it. Last night and tonight the nurses here observed while I gave myself the subcutaneous growth hormone shots that I will need to give myself every day. A different home health aid came today with all my bandages, line care supplies and spare parts, and we went through the whole procedure again so I would be comfortable with it. I now can change my dressing, change the little tippy things that go on my catheter, purge the line, give myself shots--I'm a regular Matthew nurse here, but still stuck in the hospital. I guess I'm glad I know all this--I had to learn how to do it sometime anyway -- and I'm glad they didn't discharge me in an unhealthy state, but I just can't understand why the doctors would have jumped the gun so much. I was in no hurry to leave; they were the ones who got all excited, and I pay the price. If it helps at all, most everyone on the nursing staff says that this kind of crap is pretty normal, is frustrating for every patient and family member, and everyone wishes it could be different. Well, of course!

So, anyway, learned a lot in the past couple of days. I'm still at Roswell, with this new knowledge, and am actually feeling better now about everything that I've kind of let go of my expectations. Awfully hard on a guy though. In the future, I'm going to be a lot more skeptical about everything I hear, unless it comes from Dr. Baer herself.

Pecking order for future reference:
Attending Physician: Dr. Baer--Makes any and all major decisions about my case period.
Physician on rotation: Dr. Wexlar, Dr. Wang--Make smaller day to day decisions about care, can offer opinions on major procedures and treatments, but these opinions should be taken with a grain of salt, as they must be finalized by Dr. Baer.
Nurse Practitioner: Rotation physician's eveys and ears, can prescribe small drugs and does the examining and bad-news-breaking when appropriate. Often a good liason between myself and Physician on rotation

I wish someone had told me this was the pecking order to begin with, as much of my misunderstanding and stress during all of this has come from not knowing this pecking order. As usual, however, I do eventually figure things out for myself!

Cheers and hope this wasn't to rambling of a post.--Matt