Changes & Blessings, part 5

As I drop Gwenn at my friend's house, her daughter agrees to give up her AG catalogues for Teale. Leaving Gwenn in trusted hands, I know I could be hours. Emergency rooms are not very efficient & if Teale isn't seizing we will be low on the priorities. When I get to the hospital the catalogues calm her, she flips through them, excited to have new ones. Because she only uses her left hand, she braces the catalogue under her right arm, the tension shows in her arm. Her arm with cerebral palsy tends to "contract" when she is concentrating hard. It gets tight, bending at the elbow where the IV is in her arm, setting off alarms as the IV gets cut off. The alarm can't be stopped by us, so the nurse comes in to reset it. But over and over again this happens as Teale enjoys flipping through the catalogues. We try to explain why this is suddenly happening to the nurse, but whether she understands or cares I am unsure. All she knows is the alarm keeps going off and it is interrupting her work. I try to help hold the catalogues, so Teale's arm won't contract and cut off the IV, but Teale is independent and strong willed. This could go south badly if we don't come up with a solution. I brought her portable DVD player and DVD's, but she wants nothing to do with it. The nurses request a urine sample to see if she has a UTI or her electrolytes are off. This has gone well the last few times with me, so I'm hopeful I can get it done. I'll spare you the details, but let's just say Teale is a big girl, so trying to get a cup under her is tricky, but I do it. This is the last test, blood has been taken too, so now we just need results. I have been there awhile now and have yet to see a neurologist. Mark tells me he had been told there had been a stroke victim admitted and only one neurologist is on staff right now, so there is little chance we will be seen soon. After talking to a couple people about this and the fact that an EEG will not be administered today, we start to debate leaving. What's the point of sitting there when nothing is being done? The seizure like activity Mark had been seeing has long since stopped. I am frustrated and realize going home may be fine, but things could turn at home. There is nothing worse than leaving, only to have it happen again at home. Teale's doctors had wanted an EEG done because they were concerned. This is where medical care makes no sense to me. Teale's doctors know her, they know us, they should have a say in such matters. ER is it's own domain though, they do what they want, not what your doctor thinks is best. Teale's doctors are texting us, they say they have requested an EEG, but again, the man power in ER is low, so it probably won't happen. They can make a suggestion, but ER does not have to follow through on their suggestion. Mark and I say we want to talk to neurology, so we'll wait. Shortly after our "pushing" to see the neurologist, Teale starts getting agitated. She has waited too long and is "coming out" of whatever had been happening to her body. Her loopy behavior is dissipated and she is becoming our feisty child again. She indicates to Mark and I she is done and wants to go home. At this point we tell the nurse we don't think we can wait to see a neurologist, Teale is  getting anxious, so we want to be released. Ironically the neurologists show up and their opinion is that Teale had been in a Lamictal toxicity from the slight increase we had been advised to do on Friday. I argue this much, as it makes very little sense to me and sounds like a scapegoat. Her blood level had been taken shortly after she took her morning dose of Lamictal. Our protocol is to get a blood draw to check levels first thing in the AM before taking her morning medicine. This is called a trouth blood draw. The level ER took has nothing to be compared too, we don't know what her level is after taking her medicine. Basically it turns into a "whatever" situation. We can't "win" the argument and the one test we had wanted (an EEG) they do not deem neccessary. The advice is to now lower her medicine back down to her original dose. Teale is indicating she wants the IV out, so I ask for the release to be given and to get out the IV out ASAP because my strong willed daughter will pull it out. The staff leaves the room, Mark and I talk to Teale about not ripping out the IV and assure her a nurse will do is soon. But, Teale is Teale and my warnings were not strong enough, so Teale takes her release into her own hands, ripping out her IV. Shortly after we are released, released from many hours of frustration and unanswered questions. This is going to be a long "vacation week" I think as we leave the hospital.