A New Year and I cant help but wonder what will it bring? Good things I hope for myself and for all those around me I care about. ... As seems to be often the case these days this update has spanned a few days.
I did get out on Sat and apologize for not updating sooner. This has been a harder recovery but I guess what can I really expect with 4 surgeries in 4 weeks and both shunts very difficult to place 1 and 2 weeks ago and both shunts being in new places which means essentially new adjustments as I basically figure out how will healing be and what will just be a long term 'new'? I dont know but always dislike this part!.. ... Thankfully each day does seem to be getting back to a little more normal and as irritating as the TPL shunt is to my back/ribcage it seems to be getting a little less worse.
Thankfully with all these surgeries and CNS infection apparently that was the cause of the c-spine/head headaches I was getting (totally different than the shunt headaches where) as I havent had one since the shunts where taken out 3 or so weeks ago and maybe even since we had with the 1st of the 4 surgeries externalized the VP shunt at abdomen. Im not sure when they completely went away but it is AWESOME. I remember asking Dr.Bragg and the ID docs if they thought the headaches would go away with the IV antibiotics and shunt removals and they definitely thought it would clear up; so nice!! I do wonder if the symptoms I would get any time we tested the shunt reservoirs or did shunt taps will also completely have gone away and not be a problem any time we have to test either of these in the future? Who knows but I wouldnt be surprised I guess.
Several of the nurses said to me last week as they jokingly have taken to saying I should be earning 'frequent flyer miles' for being on their floor and in the OR so often in the past 1 1/2 yrs that they where trying to count how many time I had been there.. (approx 20 times) I cant help but wonder will 2013 be better? I dont know and I wont venture to be cocky about my chances but I do know atleast I am happy to have been surrounded by family, such pleasant providers and friends who care and I hope it will be less involved shunt wise. I'll just cont to live by 'one day at a time' as far as worrying about future medical issues or to be more specific what could or might occur. I can only control now and have to trust that God is in control, which I know he is.
I had emailed Dr.Bragg about specific characteristics of the 2 shunts (ie I knew the brands but didnt know where they fixed or programmable for instance) and she emailed back relatively quickly that the VP shunt is now in the parietal ventricle location (back of head) and the 'valve' she placed is actually more of a one-way system to prevent CSF (the fluid that is drained from around the brain) from backing up the shunt system from the peritoneal cavity and less of a valve as it has no real pressure setting.
The other valve (TPLS) is a PS Medical fixed low pressure valve which basically means both shunts are able to drain a maximum amount of CSF?
Headache wise I have done well (yah!) with only minor headaches in the past 2 mornings but the days other than getting sore around the TPL shunt are better and so many comments about how much 'brighter' my eyes seem. :) I dont have a huge appetite like I have with some previous shunt surgeries but I dont think that means to much as I dont have nausea and have taken 0 anti-nausea med since last week in-patient.
I was talking to my PT today (who I think was blown away by the amount of incisions, swelling (CSF pooling at lumbar incision and in stomach) and all that has occured but also commented how much "brighter" my eyes seemed which is a common sentiment I hear from several of my providers when we have working shunts! I told him how the neck related headaches went away with the removal of both shunts and treatment w the IV antibiotics and yet how working w him in the months prior had made short lasting benefits in the symptoms. He works alot on lymphatic issues/swelling and commented maybe we where temporarily clearing some of the CNS infection and thats why I would get atleast moderate symptom improvement but then as the lymphatic system 'clogged' up again with infection in-between each Appt I would feel worse again. Interesting but could see it making sense?
I follow up with Infectious Disease on Friday at UW just for labs (not CSF) but have been finished w the IV antibiotics actually since Friday as they decided I had been on them long enough despite the 4th shunt surgery last Weds. Needless I was more than happy to have the Port access taken out! I had gotten ERT on friday in-patient (the Neurosurgery Pharmacist, my Neurosurgery team and Insur Case Man. really go out of their way to make sure the infusion gets done) so it was decided I would skip this monday (NY Eve) and go back to regular schedule next monday.
Dr.Bragg's NP called me yesterday about starting another round of a one-time antibiotic for a repeat UTI infection (this antibiotic which is hard to get is the only one that can treat it/treat the particular bug and/or IV in-patient antibiotics anti-b's have to be given. We are waiting for my pharmacy to order the med. On friday they will repeat the UA and potentially do another 1 time round of the med. All things considered not the hardest issue.
I see Cardiology next week and think that Appt should be ok, I know numerous times in the hospital the nurses commented how low my BP (blood pressure) would get especially at night - at a couple of times apparently down to something like 70/30 so the Neurosurg Residents had them give bolus of fluid to bring it up but I slept through all of these episodes (amazing actually!) and low BP for me w the cardiac meds I am on seems to work well for the shortness of breath as other than I think when the shunt is trying to drain/absorb in lung now the cardiac symptoms of short of breath (like trying to breathe around an elephant) are pretty non-existant and I have no adverse affects from the low BP such as dizziness or related and feel good on that end. An Echo is repeated every 6 mo but I cant imagine any suprises or even any med changes.
Otherwise I have done a little shopping buying a new flat screen TV (yes I was in the dark ages w a old TV, I just never cared to much as I dont watch a ton of TV) and looking at a new couch as well. I am looking fwd to going home this weekend (for good, I have been going back and forth) to get this stuff set up and to get my new internet (changing providers from US Cellular-wifi hotspot to Charter) early next week. I also hope soon to be able to try and live-trap the 2 or 3 cats that are still outside my Apt building as I do have someone willing to take them on a farm, so we will see! In the mean time I take care of them and that may take some time.
Will update again sometime soon if or when there is anything to update (with next few appts maybe).
Thanks for stopping by,
Erica
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