Analeigh has managed to stay out of the hospital since the end of October when her GJ was accidentally dislodged. We've not had any bouts of pneumonia and she's pretty much only been to the doctor for routine maintenance. We fired the old neurologist and hired a new one (a woman this time who seems much more interested in Analeigh and what I have to say about her). She's been weaning off of the Phenobarbital (anti-seizure medication that is also a narcotic) and has been put on Keppra (a different anti-seizure medication that is non-narcotic) for the time being. We had an EEG done on January 5th and will be getting the results on January 17th. We thought she might be having seizures but I'm not sure now that she really is. I guess we'll find out soon enough though (this coming Tuesday).
Analeigh also saw Physical Medicine for the first time at the end of December. They increased her Diazepam to help with spasticity and ordered a pelvic x-ray that we just had done this past Thursday. Results from that are in and apparently her right hip is dislocated and she has some weak bones. This is a "common issue" in "these types of patients" and there's really nothing they can do about it. I was told by the doctor that if she begins experiencing excruciating pain from it, they might consider surgery but not until after she turns 2. For now, I think her pain level is minimal and can be treated with the Diazepam and Ibuprofen. She said later on there is the option of a Baclofen pump but I've already researched that and made up my mind that the risk of infection far outweighs any benefit she might get from it.
We also just saw her Gastro doctor who wants her to go on a diet... yep, her first diet at 21 months old lol. Apparently her weight is not proportionate with her height so they cut her feedings by 50ml per day (which means she gets to spend 1.5 hours per day off of the feeding pump.. yay!). I asked about the possibility of ever working her back to G-tube feedings rather than GJ and she said at some point in the future we might try it. She will want to repeat the swallow study and upper GI first and it will be later on but that was enough to satisfy me. I just can't stand the thought of knowing there's nothing in her stomach and worry often whether or not she ever feels hungry.
Last on the list of new things... I fired her regular day nurse and gave the spot to a nurse who covered our night shifts while our regular night nurse was out having surgery. This particular nurse (the one I fired) had been with us for over a year (almost since the beginning) but had apparently forgotten her place somewhere along the way. She was saying all kinds of mean, hurtful things about me behind my back, openly refusing to do things I asked her to do (such as opening Analeigh's curtain, changing her linen 3 times per week and doing various exercises/positioning with her). Anyway, I won't go into further detail but things are much more relaxed with the new day nurse and I'm much happier!
Well folks, that should do it for now. If I think of anything else, I'll be sure to post again. :)
No comments:
Post a Comment