I Want That 'Robot' to Stop Looking At Me!

I am back to good health and catching up on blogs. I feel like I have missed out on so much. It takes a lot of time to get caught up!

We are all a bit on edge here. Worn out and anxiety ridden. The time in the hospital was needed but it was exhausting. We won't have the results until next week! Maizie did fantastic considering all of the blood draws, the noise, and the sensors on her head and chest. I think for her the worst part was the application of the sensors. Tears rolled down her cheeks and she was a trooper but there was pain. For a child who does not like to be touched I can only imagine. Oh, and the hospital food sucked! I can't believe so many people say they have great food. It was nasty. So, in order to get Maizie to eat we had to bring in her 'favorite meals". If we would have relied on hospital food she would still be there.

A few of the sensors came loose and actually burned her forehead in a few places. The EEG guy had to come in and reapply them and rewrap her head. Needless to say this was not Maizie's favorite part of the experience.

The nurses were all very kind. The biggest problem we had was when they put another child in the room with us. It was our last night and Maizie was at the end of her rope. I was at home when Joe told me they moved another patient in. I was not pleased!

Once I arrived I asked to speak to the nurse alone in the hallway. I told her that yes Maizie had been handling everything well but that was because we were able to control the environment of her room. We kept it as quiet as we could when needed. I told her that Maizie either needed to be moved or the new patient needed to be moved. The nurse looked at me like she had heard this speech before.

I was told I had to talk to the head nurse. Yes! I was in the mood for some good ol' advocating. Luckily, I did not have to do much talking since when the nurse came by Maizie was curled up in the fetal position, under the blankets on her bed crying loudly, "I just have to be alone! I just have to be alone! I can't take it!" I made it clear that things would only get worse if we did not move Maizie as quickly as possible. The nurse said, "Of course! We can move her right next door!" Of course we can! But, why when I warned them more than once of her sharing a room did they not just take my word for it? So frustrating!

The nurse said, "Maizie...honey lets get you out of bed and into the new room." Maizie screamed, "No!!!! I can't do it! Leave me alone! I have to be alone here now!" So they left Maizie hiding under the covers as they moved the bed to the other room. It was quite the show. The new or should I say old neighbor in her room was all wide eyed and staring at us like she was very glad to see us moving. It was a good hour before Maizie would come out from under the covers and when she did....whoa! Did I ever get yelled at. Suddenly everything was my fault and I was the worlds worst mother and she wanted me to just go home and leave her there alone! She insisted that her stuffed animals were going to growl at me. She even threw one at me. Maizie was sure that she was big enough to be on her own in the hospital! Ugh. Needless to say I refused to leave.

The next morning Maizie apologized for getting so angry with me. This was the beginning of noticing some changes with her new anti seizure medication. It seemed after every dose Maizie would become irate and full of anger. Was it just that she was going stir crazy or was it the new medication? The seizures were slowing but her moods were becoming irritable and beyond difficult. It felt like we were moving backwards to when Maizie was about four or five and at her worst with handling anger and looking back her seizures were the worst then too. Espeically since no one saw them as seizures.

Well, last night it was all too clear that it was the new medication. Maizie had went to her room angry and for what reason I don't even know. The doctor got us in to see her right away and now we are on to a different medication. Of course we have to start the long process of weaning her off the original medication and add in the new one slowly. If we don't wean her off of the old one the seizures could come back full speed and we would wind up in the hospital again. So, the neurologist has a detailed medication schedule for us to follow. We need to use Excell just to track everything. Argh. I will no doubt dream about medications tonight. God willing this next medication will slow the seizures without the scary agitatied behavior.

In order to get through these next two weeks of weaning the medication and dealing with increased anger and implusitivity problems we headed out to Blockbuster. Now, we have Netflix and have not been to a video store for a couple of years now. So, we were shocked to see that people still pay four to five bucks to rent ONE movie. Why? Why do that when you can get Netflix for $15 bucks a month and see several movies a week?? I just don't get it.

But, out of desperation we paid for one of the confusing as hell monthly membership options just so we can take Maizie in every couple of days to pick out some new movies. Her attention span is not very good, her seizures have decreased but continue so it is still as if we are living with a very sick, very irritable child.

Our mornings are typically spent waiting for the morning seizure....then it is resting time from the seizure...then it is time for a few mood swings followed by an afternoon seizure which is typically followed by more rest time. This leaves time to watch a few movies, maybe do some school work and get in lots of trouble for impulsive behavior like writing on jeans or tying Stella up inside her dog crate and the list goes on. Lord help me! The evenings are her best time...well, they were until this new medication screwed that up too. Bedtime has become a rage filled nightmare. My poor baby. It is very frustrating to deal with her when she is like this and yet I know she can not help it. She is as amazed with most of her behaviors as we are.

So while others are enjoying an upswing with school successes and reaching new milestones (yes!I am thrilled to hear it and can't wait to be there with ya all!). I must say we are on a slippery sliding slope of medication nightmares, seizures that just won't totally go away, regression in all of its forms and this includes Joe and I as we begin to nit pick at one another from being cooped up and feeling a sort of dejavu from several years ago.

The postive part is that we seem to have found a good neurologist who is willing to do whatever it takes to get to the bottom of Maizie's seizures. In time we have to believe that a medication will work and we will be back to going to plays, visiting friends and all the stuff that makes our lives so much fun. Until then, we still do see Maizie as the child who will not give up. She is a fighter. More patient than Joe and I combined, I think.

Here is a picture of the messy looking EEG stuff that went right in front of the bed. At one point

Maizie said, "I want that 'robot' to stop looking at me!!!!!!" (a.k.a. the EEG machine with camera)