Yesterday Dr.Bragg stopped by and thought we would probably take off the PCA pump today but it turned out to be her partner on rounds this morning which was fine to. I may not have had good expereiences with him in the past but I think it has been moving fwd perhaps bc Dr.Bragg does trust and like me so she is changing his mind? Who knows but it is nice to feel less un-nerved around him. Otherwise Dr.Bragg just turned the LP shunt back down by .5 on Sat. and I am unsure what she will say but I kind of think we need to turn the VP shunt down by .5 as well. Symptoms have been better though as has been the case when we get the headaches improved then the back pain/discomfort that goes down to my low back, hips and legs seems to get worse. Dr.Ishkander today who is Dr.Bragg's partner said when he has delt with this 2 part shunt systems in the past it has typically been his experienc that they focus on solely the shunts (with controlling the other pain) and getting the headaches under control and the rest of the dicomfort comes in time. I am unsure but feel that is probably what Dr.Bragg will aim for as she had talked in the past about possibly having to move the lumbar to thoracic catheter due to not enough CSF in the thoracic space but we've not talked about this for a while now. I just want the discomfort and how it affects sleeping, etc to ease up soon! :) The LP shunt is now set at 1.5 and the VP shunt set at 1.0.
I have been thinking alot over the weekend about people giving their opinion of the choices ive made and make and I have partially come to the conclusion that while I cant change other people I can cont to go by my philosophy of 'One day at a tome' and when a situation doesnt neccessarily allow me to deal with a health issue(s) in the one day at a time fashion than I have to take it in a bigger picture and look at how will the situation affect my life further out without worrying about what others think. Many may be well meaning but I cont to be the only one living in my body everyday. It also doesnt mean I dont appreciate people who actually know me and care weighing in but there is a big difference between just being nosy and thinking a person knows best and actually knowing a persons whole situation and wanting to try to help.
I cant talk about it yet but received an email tonight from someone ive been communicating with in the MPS community and will learn more later this week but am excited! I am very excited to share the information and possible opportunity to!
More soon, stay tuned. It has been almost 2 1/2 weeka in the hosptial so im curious what this week will bring! I got to see my nephew, sister and parents today and was completely AWESOME!
Erica
Balloon (walking kitty) from my sis and Nephew)
Out on the Hospital Patio playing Scrabble.
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