Wednesday, June 2, 2010

Update for June

We both went to the doctor this time since I was unhappy about his white blood count falling so very low. After the April appointment and subsequent injection, blood work was done locally to see progress of the injection. At mid-month, it appeared that the injection was working as the WBC was improving.

I voiced my dissatisfaction at letting that WBC fall so low to the intern doctor we had during the transplant stay. Since I feel like we have a good relationship with him, I was quite honest about my feelings. He of course, told the doctor and we don’t think it went as well with him.

He came in quoting studies and years of experience as the reason to not worry until it is that low. "Oh well" is my thought. Our thought/belief is we “hire” the doctors, and we continue to hire doctors who listen to us or we find another. Now with that said, we aren’t there yet. He wasn’t rude like some others.

The labs showed additional improvement almost to the “normal” range. However, the doctor still doesn’t want to take him off Prednisone even though we voiced our concerns prior to putting him on it. We kind of think it’s a “don’t tell me what to do” sort of thing since we questioned him.

As we are pulling out of the parking garage, Vandi called asking if he is coming for a Reclast injection (a one year calcium infusion). I explained to the nurse that the reason he hasn’t gone is that no one will “schedule it” and Sean looses money every time he has to go to Vandi. He is out of sick time, vacation and personal time. So she did tell me that she would schedule it for our next appointment. So it is scheduled for the end of June. It seems simple, but they kept telling us “just go over after an appointment and they’ll get you in.” It is difficult enough to get in when you have an appointment. Why on Earth would we want to go without one? :-)

The following day, the nurse called and lowered Sean’s Prednisone and put him back on Celcept (he had been completely off of this one for over a month). We will see how that works on this next trip. I might actually request mid-month blood work. The book that we lovingly (no offense) call The Transplant Bible needs to have the pages changed every time they change his meds. Since I don’t track what he takes as much anymore, that thing MUST be correct. So Sean is working on that again. I explained that I need to grab that and head to an ER in an emergency. The bottles are not correct since they continue to change the doses, so I need some sort of reference. Anyway, it’s getting done.

Dayle is off at school. The school is very strict and not sure the head counselor is completely with it. He keeps calling “meetings” when they should have some study time. So she is a bit stressed about that. She would like to plan her time for studies herself and clearly that is not happening. I think she’ll get it worked out, but until then her daddy wants to fix it all for her. I think this is good for her. It’s kind of like a work situation where there are personality conflicts, but you still have to be productive to get the job done. She is learning at a young age so hopefully that will make her a stronger, better adult.

The dog seems lost without her. He follows me to her room, he’s looked in my bathroom for her and waited right at my door as if she’d magically appear from the show-some old movie flashback ;-) He’s taken her spot on the couch which is totally not allowed! We are taking her bed apart in her absence and I think that’s when he’s going to loose it. I don’t know if there is such a thing as doggie anxiety meds, but he might need some-kidding by the way!

Garett enjoyed his visit with a friend recently and watching the raccoons and a bear eat! Yes, these were real and oh my goodness so cute unless you got too close to them and they banged the railings :-)

Me, well, I’m hanging in there. I moved rooms by choice to be at the end of a hall with no adjoining room. It is nice to move and clean out things.

Ha, so I thought cleaning was fun! I've been working on Dayle's room for a week trading furniture, etc. I did put some boxes back into her room for her to sort through. I have ideas where she can hang things on the wall. However, I am letting her choose the frames which is the only reason these items aren't hung. I wanted her room completely done when she walked into the house.