I think i'll stop thinking I know how long something is going to be or how something will turn out because clearly I stink at figuring out my own body! In this case I just mean when it comes to the shunt and this admission as when we went to the ER we thought it would be just that day and then we thought it would just be over-night admission while Dr.Bragg figured out what was going on/if it was the shunt nad then it became surgry on fri - so while I was sick I still felt like an slight imposter on the neurosurgery floor as I could take care of myself and other then increased meds for the headache and pain and the IV I essentially did not really require nursing care. My neurosurgeons depressing the shunt valve/reservoir and then the shunt tap which was weds and showed the CSF flow was slow/obstructed where really the only tests she did and so I was here and sick but also at times did feel pretty fune - like aflippd switch, fine one moment and headache the next. The time still went fairly fast but I didnt have mhy laptop here and didnt have my planner so I felt a bit like a big fish out of water and also each day when I would learn I was going to be here I had to scrammble to have my cousin or family go tgake carfe of my carts. I thnk because im the type of person wo likes well planned out occurences ie if goibng to be in the hospital I like knowing ahead of trime and if going to have surgery I find it easier to know ahead of time to. Yesterday we thought I would get out today as my neurosurgeon said if I felt good she had no problem letting me go home. Last night I had alot of gtrouble falling asleep due to the shunt pain, muscle spasms in my low back and L leg and hip pain because I essentially could only lay on my L side which happens to be my worsg side for low back and hip pain and the side my Port is on (ipper chest) and this was being miserable due to irritation and the needle sticking out some. This morning when I woke up after finally falling asleep I ws groggy and exhausted and headached/bufned. I think when my neusorugeon came in she could tell I felt pretty crappy bc while I would still have went home she just said she would keep me today and let me go tomorrow if feeling better. She wanred to try to depress the shunt to see if the re-fill was normal which would tell her how well it was working again but she said she didnt want to cause further pain so she'd wait and we'd see. how it goes. Today I am still sooo tired this afternoon but after being up a few hours this morning I did start to feel better H/A wise and get a litttle more energy. Late this afternoon I got tired, tired, tired again so after a walk in the halls tried to take a nap but that was a no go. Hopefully I sleep gvood tongiht.
I talked to Dr. Bragg about the muscle spasms I hav been getting for atleast a 1 1/2 mo period now and she - feels this could be from the shunt catheter fix last time and nerve root re-irritation + this may heal and the spasms jsut go away now that the shunt is fixed. Otherwise Dr.Bragg said she had other treatment options she could use if this didnt heal and she was also going to look at my medication list to see if there was anything in there that could give her hints.
To switch gears temporarily monday I will be on a conference call with 4 Genzyme reps; several from the marketing dept regarding moving forward on our Adult-MPS I project and identifying our next step. From this call we will make the neccessary arrangements for the conference call with the 5 or 6 Adults also living with MPS I and how we will do this ie phone call or using something like skype combined with the phone. I am looking fwd to this project and found it pretty easy to identify adults who also want more information regarding our age group and for healthcare providers to be better aware of the needs of individuals in this subset. Many times simple things like having a single provider willing to act as the 'Case Manager' or 'Gate keeper' ive found makes a huge difference. Someone usually a provider who wants to learn about MPS I and is active in getting articles, sharing what they learn with their patient and keeping core providers communicating with each other and invoving their MPS I patient in care decisions. Many folks with MPS I I spoke to where more than willing to participate simply out of interest which is awesome!
I Cancelled a Neuro-Endocrine appt which was fri and my dr is booked out but looking through her schedule to see when she can get me in. This provider tracks cortisol, thyroid and other hormone levels and especially so when the hydro is problematic as it has been in the last 4 1/2 mo with these 6 revisions so close together. She is the dr that has considered writing a paper on the effects of long term hydrocephalus on endocrine levels and how my hormone levels improve when the hydro is well controlled and how they decrease/go down when the hydro is not well controlled. She was the biggest backer of my having problems with the hydro due to her ability to look at my endocrine levels during the times I said I was having pressure headaches but very few believed me.
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I will update soon,
Erica
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