Today my nurse got upset with me. She and the respiratory therapist were changing out the hoses on the ventilator. This process is somewhat of a delicate process as I need to be disconnected from the ventilator hoses, and "bagged with oxygen" to complete the change. In the meantime, I am not supposed to ever move my head unless the nurses are assisting me because it is important to keep the tube in the correct spot inside my lungs.
Well, they took too long so I tried to climb out of my bed. Okay, okay...I didn't get very far because my head is still really heavy compared to the rest of my body. But I got my little knees under me and pushed with my hands flat on the bed...I pushed with all my might and I lifted both my bottom and my head a few inches off the bed, thus moving the hose in the proces. I'm still not sure what the big deal is because the nurses put so many layers of tape on my face to hold the tubes in place that really the only thing that ever actually moves is my top lip.
However, the nurses apparently do not agree with me. I was promptly pushed back down onto the bed and then smushed with Mr. Koala Bear. Can you believe that???? She put him right on top of my head. How rude!!!!! I mean really....I'm three weeks old for heaven's sake....just let me help re-position myself because I know what's most comfortable!
And by the way, after I was sufficiently smushed, my nurse checked the placement of my tube and it was still placed exactly where it needed to be. Talk about over-reacting!
So, just to be ornery, I allowed myself to desat a few extra times today just to annoy my nurse. It obviously worked because she told mommy and daddy that she was exhausted and just wanted to go home and take a bath! I hope her bath is nothing like mine was, otherwise I can't see how she'd enjoy it at all!!! In my opinion, baths are not fun!:(
After daddy came home from work, I got to hold him for a little while. Because I was being so ornery, daddy got a little worried and only let me hold him for 1.5 hours and then had the nurses put me back in bed. Daddy said I wasn't looking the right color....I admit I was a little pale, but it was only because I was so tuckered out from being ornery with the nurse....next time I'll save some extra energy for when I get to hold daddy.
The doctors are trying to decide what to do with me. They really want me to be off the ventilator within the next week. They've been weening me off by lowering my settings on a daily basis, but all four doctors and two nurse practioners agree that I don't need to be on the ventilator for too much longer. In their meetings, they discuss whether to give me some more doses of Lasix or to give me a short trial of steriods. My #1 doctor, Dr. Barden, explained to mommy that either treatment will assist in removing me from the ventilator, but both treatments also have negative side effects that must be weighed. I've had two doses of Lasix so far, and while it doesn't appear to be helping my O2 saturation very much, my chest x-rays have been looking quite good. Dr. Barden says this could be a result of the Lasix, or could just be that my lungs are becoming more developed and are functioning more appropriately. The problem with the Lasix is that it can make my electrolights become wacky. Already, my sodium level is low and I'm taking supplements for that. He also explained that my Calcium levels could become depleted which is really not good for a growing boy like me because I could have bone problems like degenerative bone desease or possibly even symptoms of Cerebral Paulsey. The upside, Dr. Barden explained, is that I wouldn't be given the Lasix every day and not for very long and they can supplement my Calcium and Sodium so the risk could be minimal. None-the-less, there is still the risk.
He also informed mommy that the steriods will have the desired short-term affect that the doctors are looking for, but as we all know with steriods, there are certain side effects that are not necessarily desireable. Although, Dr. Barden did explain that I would not be receiving the same steroids as Barry Bonds takes. I think he was trying to make a joke, but because I'm only three weeks old, the humor was lost on me.
The main issue facing us at this point, is that the doctors all have their own opinions and beliefs about each treatment, and currently all of them are admitting they are not entirely sure either treatment will work for me. So the question they are asking themselves and each other is, "Do we take the risk of the negative side effects of either treatment when we do not know which treatment will actually work on Zander?" So today, on my three-week birthday, we didn't try either treatment.....the doctors want to watch my levels and study me some more before making a decision. The cool thing about my team of doctors is that even though they all have their own opinions and beliefs, they do not argue or jump the gun, they simply discuss everything and weigh the pros and cons. If I were a doctor, I'd just throw a fit until I got my way!!!!
I have a feeling that if I don't succeed in yanking the ventilator tube out of my mouth myself, by the end of the week, the doctors will have come to a decision regarding which treatment they will try with me. Don't get me wrong, my doctors are very intelligent and know what they are doing, it's just that they want to choose the best treatment for me the Zander-individual, because they want to decrease the posibility of any potential negative side-effects. However, they better decide pretty quick because everyday I build up more muscles in my arms, and soon I will be strong enough to yank that tube out before they can stop me. Mommy says that's naughty of me to do, but I know that the sooner that tube is out of me...the sooner I can get better and walk out of the hospital. Okay, be carried out of the hospital.
I feel sad for mommy, daddy, and me because I'm can't leave the hospital. Mommy blames herself, and I blame myself, and daddy just worries a whole bunch about both mommy and me. Mommy misses being able to sleep next to daddy at night in their bed at home, but at the same time, she can't seem to force herself to leave me for more than a few hours. Mommy almost went home with daddy tonight to sleep, but then got scared because daddy would leave for work at 4:30 am and she would be alone. She might try and go home with daddy tomorrow night and then come back to the hospital when he leaves for work. I think she just likes having one of her two men with her at all times. Daddy doesn't like to leave me either, but there are not alarm clocks at the hospital, and it's sometimes hard to sleep with my monitor alarms going off. But even so, daddy ends up staying the night with me more often than not. My nurses have gotten used to waking him up at 4am.
Mommy told me that if I could just come home with her and daddy at night everything would be good. She thinks it's weird that I'm her baby and she doesn't get to do all the things that other mommys do....feeding me without a syringe, holding me and rocking me to sleep, and waking up in the middle of the night to change me or soothe my cries. She knows it's only a matter of time before she can do all these things, but right now not doing them just doesn't seem right. The social workers still ask mommy if she is depressed and mommy maintains she is not. She knows what the symptoms of depression are and she doesn't fit them.....she says life just seems to be in limbo right now.
Anyway, it's time for me to get my bedtime story, so I'll write more tomorrow.
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