September 15, 2008 (Monday)

Well, today Stephanie took Gracie to have her first blood work done since chemotherapy. This needs to happen each Monday and Thursday. We thought that since they would have to be done so often they would prick her finger and take blood that way. However the place that our pediatrician sent us to would only take blood from her arm. This could become quite problematic with all the blood that needs to be taken. I am not a nurse or doctor but am told that a vein (or at least a specific location) is accessed it becomes less accessible in the future. So if Gracie needs blood work twice a week pretty soon it will be difficult to take blood at all. Anyway, we are trying to find a place that will poke her finger instead to get the necessary blood work but with Houston still shut down from the Hurricane it has been difficult to get access to our doctors.

Anyway, so Stephanie took Gracie to get this blood work and was thoroughly unimpressed with the approach they took. Apparently they failed to hit the vein properly on the first attempt and Gracie was pretty sore. Then they had to get another nurse to actually do it right and get the blood. We do not know the results from the tests even though the sheets we received from Houston say to make sure we record them. The lab would not release the information to us. I am really not sure what is the proper way but you would think that the lab people and doctors should know and be able to tell us what to do.

To be completely fair, I was not home most of the day today (I am really trying to get back into my regular routine at work), so all of this frustration is kind of second hand. Stephanie has been so good to take care of all that and carry the bulk of the load. I am so lucky to have found her and convinced her to stick with me! Stephanie's mom, of course, is helping out a big deal by staying with us over the last 2.5 weeks. That has been a real lifesaver.

Gracie did not like the needles (she had three pricks today because of her shots at home then the two at the lab) today but was her normal cheerful little self during the rest of the day. When I came home in the early evening she was the first to come running to the door shouting, "Daddy, you're back! You're back!" It was good, as always, to see her.

Stephanie's Note - Okay, James tells me I'm going to get a reputation here. In case you haven't guessed I'm not quite as soft hearted as he is. Actually I have to try really hard not to be very outspoken. To give myself credit I have improved drastically in this regard though, and I'll have to admit that that is largely due to James' influence in my life. With that said I need to embellish on why I was so unimpressed with the lab staff today who took Gracie's blood. I can forgive the two pokes (although how they missed such good veins is a mystery to me - and I was an RN and have accessed veins numerous times so I can be critical here). What I'm so angry with was that they dug around for so long fishing for the vein on the first poke all the while saying "Oh, it's not so bad" as she's crying and saying "I don't want it". HELLLOOO have you ever had someone fish around in your arm for a vein?! Yes it does too hurt and to tell a three year old it doesn't is just plain ridiculous. Her pain is valid, don't deny her that! The injections I have to give her hurt her too, and I'm not exactly thrilled about that but I don't tell her they don't hurt. I know she needs them so I give them anyways. But I never lie, I tell her that it'll hurt but that I'll be fast and it's all to help her get better. Maybe she doesn't understand that either, but at least I haven't lied to her. I was told that was part of being a good nurse. If you say things won't hurt when they really will the child will be afraid of everything because they'll never know if it will hurt or not because they don't believe you any more. Besides, if you fish like that for veins twice a week it won't take long until there is nothing left to fish for. This was one situation where I wish I hadn't learned to control what I say, but it's probably a good thing that I did. I'll promise you though that that woman will NEVER touch my child again. Gracie was so brave through it all. Even though she was crying she held nice and still, even when she would have been justified in kicking the lady in the nose. In case you're wondering the cancer clinic staff told me that usually they don't like to draw the biweekly blood work from the port a cath because they can usually do it with a finger poke. So they'd rather not access the port which is quite a procedure as well for just a couple of ml of blood.  And there is no way I'm letting this lab near her port anyways. 

Basically I think the lab staff are entirely ignorant about how to deal with pediatric patients, never mind pediatric oncology patients. If I have to I'll drive to the Cancer Center twice a week to avoid dealing with them again. I've already got a call into the cancer center here to see what they recommend we do for Thursday. I wouldn't be so angry if this was just something that she needed to get done once a year for a physical. Kids get over things quickly. But this is her life for the next 6 months. In that time she'll have had far more blood drawn than I've had in my entire 30 years.  I'll do what I can to make this as easy as possible for her. Thanks for letting me vent, I feel much better now even if I did solidify a reputation for myself.