The Aldurazyme (enzyme replacement) is infusing right now, not sure how the NP got it changed but originally Pharmacy had told the Neurosurgery Team they couldn't order this drug until I was admitted and so I likely wouldn't get it till Weds (wouldn't have been to huge a deal). - Glad it was sorted out and able to be given today though! :) Any little "help" ahead of surgery is good!
The CT Scan is also done and was earlier, not horrible albeit laying flat was not awesome but also thankfully quick other than the 3 mins it took seemed quite long and honestly by the end throwing up seemed like a very real possibility! Thankfully it was quick and within 20-30mins after I was mostly feeling fine again. I've been sitting on the side of the bed since working on a blanket for my niece (her 3rd birthday is the 21st!) and watching last weeks episode of Parenthood. This CT scan as I've written about several times before is used in the robotic type computer machine (not sure if that's really how best to explain it) Dr.Bragg will use in surgery in order to try and best place the new location of the VP shunt in the lateral (parietal I think it may be called)
ventricle. -I should really know it by now but can never remember the names of the 4 ventricles! She is planning to try and use the previous incision and area we had used last year after the shunt infection and after which she placed that new VP shunt in the back ventricle.
Accessing the Port was a joy today, I actually really get letting other nurses who've not ever accessed a Port before try to learn but sometimes I just wish I wasn't always the guineau pig! =) It took 3 tries today, the 1st two over-seen by 2 experienced Port-access Nurses and the 3rd one was actually done and accessed by one of these nurses.-The final Nurse to get it is actually who accessed it (over-saw accessing it) last time too. Anyways all is well now, Dr.Bragg walked in the first time the Port was being accessed (and failed attempt) and I think her face wavered between disbelief or "I cant believe you have to deal w that" and it was almost like she wished she could just do it herself. Once the head-overseeing Nurse deciced they would wait and come back I was bleeding from the Port and Dr.Bragg was quick to try and find something to cover it as she didn't want it getting all over my clothes. I like that she cares and notices these things. =)
Once we had the Port access on hold for a bit Dr.Bragg and I started talking again and I asked her if she had changed her mind on anything or if we where still going to go w the same basic plan. We talked for a good 15mins about her plan and one part (the Thoracic valve) she is likely going to use a different type on as well as she was planning to talk some more to her Codman Rep (who I think she said would be in the surgery tomorrow) to see about a smaller profile but similar Codman valve as she wasn't comfortable going ahead and placing the ProSA valve (due to it being a metal profile which she felt had a strong potential to still be irritating to the muscles and back tissue as is the issue now) and she said they have a lot of difficulty getting this valve reset/re-programmed.
She did say this surgery would be on the longer side given what she all will be doing (5 or 6 incisions, back/stomach/side/2 on head and maybe if I understood correctly one at the neck/shoulder area to pull the catheter through). She is hoping if she is able to just pull the catheter from the shoulder down (or maybe it was from the abdomen up, honestly that part is a little confusing) she thought this may be a little less painful than having to completely tunnel a new catheter/new shunt trac (given how tough our MPS skin is "like going through shoe leather" and the bruising that tends to leave all along the abdomen/chest/upper body. My guess is the back incision(s) and back of head incision (due to laying back) will be the most uncomfortable - the back incision because there are more nerves there and I gues to, probably the side because there is less fat to protect.
The surgery will be her first of the day "as she wanted everyone to be fresh and on their toes" (or something similar to that) and she said originally mine was scheduled as second but she had it changed as her second one is simpler and will be the shorter of the 2 she has. She just said something like this will be a longer surgery, you'll be on the table longer. General Surgery will help disconnect the 'T' connector holding both shunt distal ends in to the peritoneum and they will be the ones to tunnel the Thoracic distal (draining) end back in to the pleural space which she said they would be using a side incision vs the incision we used last time. I think that means they help her with the new valve placement in the Thoracic spine but I am not sure of that part. Otherwise she will do the VP shunt and revisions/changes there. She planned to start w the Thoracic shunt so as not to make General Surgery wait around for her and then she will move on and complete her portions of the total surgery.
Overall I feel confident (no reason not to, she is great) as usual in her and her decisions and feel she is or will make what she feels is the best decisions for my care. Hopefully this will go wonderfully but I also always know from experience she hasn't walked away yet (thankfully!) should we have any issues after.
I'll try to update when I feel up to it, some of you are also on fb and can see shorter updates there to.
Thanks for stopping by,
Erica
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