Day 29 Post-Op
Well im not getting out today which in all honesty didnt surprise me that much. Dr.Bragg 1st wantd to do the Aldurazyme infusion this afternoon (currently going) since we had it ordered and then tonight she wanted to try doing the Lidocaine drip as she wondered if since the discomfort that came back last night in my hip, mid-back (thoacic spine where the catheter sits) and neck was worse at night if doing the lidocaine drip at night would help more/longer and in reality maybe it will since i'll likely go to bed shortly after it's done and those areas will have the night to calm down and rest while I sleep. we will see. She still talked abour discharge on Sat though so that is a good thing. I am unsure if she will order a anti-inflammatory drug for when I am at home given we know the long term healing process will be months and the anti-inflammatory could help the nerves. Otherwise I woke up to Dr.Bragg, her NP and my nurse standing right outside my room where there is an entry way and teasingly talking about me (Dr.Bragg has a funny sense of humor and by this point we sort of pick on each other quite a bit) :) and when she came in she commented how we have the strangest conversations which is really true and made me think of my sister who I also have some of the oddest conversations about in amonst actual things we are talking about. Ive had a headache on and off today so in addition to the oral med my nurse gave IV morphine through the port which knocked the level of pain down so atleast I was able to get in the shower and now typing this.
On a different note earlier this week I talked to someone that gave me all the contact info I need as far as holding a job and also keeping Medicare as before all the things I did where pretty much volunteer with all travel paid. I'll be able to work an unlimited amount of hours for a 36mo period should I stay with this Foundation that long and then make up to a certain amount of pay. With medicaid its a bit more tricky but the guy I talked to said I would be able to work and if keeping medicaid would do a pay program where I likely paid $25 a month to keep it in order fort hat to supplement my medicare costs. It all seems reasonable and I am super excited to be working for this foundation and so far we've accomplished quite a bit it seems in talking to the 2 I work for on thurs. Which that in itself was quite interesting - I had the Cardiology resident (going to be an internits) in here first so she happpened to come when I was first on the phone so I asked if I could call back and that was fine. After the Resident left I called back and we talked for quite a while and then the actual Cardiologist came so I again had to hang up and call back. 1/2 hr later called back and same thing - then the Cardiologist, Resident, Neuro-surg Resident, and my Nurse came to the entry to my room (a sort of nother room with a window to my room and nursing stuff, etc.) and I stayed on the phone for about 10-15 more minutes and finally we hung up and got things started after talking. Definitely a pefect example of trying to balance multiple things in my life! If nothing else since I could tell they all where interested in what I was talking about on the phone they got a brief education in MPS and rare disease outreach; what I am doing. :)
Will update when there's nore to write about or anything interesting going on. :)
Sometimes no news is good news!
Erica
Day 28 Post-Op -
The Lidocaine dose/drip went fine; we slowed it down to almost 2 hrs and only problem was final flush and some sort of reaction to that rate w/uncontrolled jerking like movements very fast for a few mins and Resident + Nurse had to basically hold me to prevent falling off bed. Strange. Hopefuilly will get out tomorrow. Pain in some areas is imprpove while other areas the same (hips, mid-back are the same and not much improved when sitting up or standing but do seem improved when laying down. At the same time the rediating symptoms also seem a little better.
Dr.Bragg's NP stopped by later thurs afternoon to ask a question and I in turn asked her a quesiton and we where talking for a while and she jokinly said that in cases like mine Dr.bragg always refers to us as the "patients that Dont follow the manual" ie my body doesnt heal according to the textbooks and so have to think outside the box in order to figure out how to deal with what going on and treat the various problems. Seemed like a fitting analogy and I like it - told Sue it would be one that id more than likely remember! I think in reality with MPS out symptoms are so 'outside the norm' so often that if we cant get a doctor who can think outside the norm than we'll never truly get a good answer and I think Dr.Bragg has finally brought the perspective in many ways that we needed to my care in the past year as ive said before!
This week especially my symptoms seem to ebb and flow so much - it is honestly a little scary not knowing what the healing process holds. Like ive said before it's hard when people are so peppy about it all and I hear what my neurosurgeon has to say - and not that she is giving up bc she doesnt and isnt in reality she just adjusts her approach. It's more that she even feels like there isnt alot we can do at this point especially if the Lidocaine drip doesnt work and that the healing process will just have to work itself out and that can take several months for the nerves to heal. Im definitely not giving up on this because I know it will get better because I have an awesome neurosurgeon and her awesome team as well as we've been through a similar spine-nerve damage issue before that took months to heal and I got through it and could still function albeit just in slightly different ways. I do hope the symptoms like vision issue improve - I asked Dr.Bragg's NP this afternoon if she thought the vision issue could be secondary effect of the thoracic spine irritation and spinal shunt flow and she mentioned a few things but was going to talk to Dr.Bragg. I am curious what Dr.Bragg says when she comes by fri.. I hope she has some ideas...
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