Tues surgery went well, another quick one lasting around 1- 1.5hrs. This time a 5:30 arrival and 7:30 surgery time.
I am not completely sure but I think the Anesthesia dr. was a new one to my Team. Either way he listened to what Dr.Bragg suggested and all went off without a hitch it seems.
They used an LMA for airway access which is something recommended in MPS pts when possible, due to our severe airway issues. I've heard more times than I can shake a stick at that "Your airway was a lot more severe than I really thought from looking at you, you need to emphasize how severe it is to new airway drs. So needless I get a little nervous w Anesthesia drs that seem a little cocky!
That said, initially this dr. said to me and the Resident working with him "I don't see how her airway could be that bad" and something like "it doesn't look like we would have to use any extra equipment". I commented to Dr.Bragg to please, please make sure he wasn't going to try anything new. These are the moments I am sooo grateful Dr.Bragg is so up on my airway issues and what works!
In this surgery Dr.Bragg was just taking out the current fixed pressure valve and exchanging it with a programmable valve we'd used before. Instead of the regular size Codman Hakim valve we've previously used there must be a new(er) version of the Codman Hakim programmable valve that is smaller in profile which is what Dr.Bragg placed. Although headaches where not as good or atleast I didn't think so as we've had with the regular size valve surgery did seem to go fine.
I honestly don't know when symptoms started up so bad but I think it may have been Weds I started feeling really, really bad again, I think throwing up, nausea and severe headaches. Because of this other tests where done Weds (Xray) and Thurs morning a shunt tap was done by Dr.Bragg. I do sort of remembering telling the Nurse Weds night I wasn't feeling good and thought something was wrong. She must have talked to the Resident as I remember that dr. came by and said he'd talked to Dr.Bragg, she wanted to wait till the next day to do a shunt tap which she did do herself Thurs.
Either way I am VERY glad that this issue w the shunt was found fairly quickly (Dr.Bragg hadn't wanted the Resident to tap the shunt Weds night so when she came in Thurs morning she did a shunt tap right away) this along with the prior Xrays showed the catheter was kinked and I think the valve was flipped?
honestly I can't remember for sure which occurred 1st of the tests but this led us to a 2nd surgery Thurs afternoon and fairly quick answers to why I was feeling so much worse vs better after the 1st revision.
In the shunt tap that Dr.Bragg she was able to get 30ml of CSF (spinal fluid) off in a relatively short period. This amount of fluid is really unusual for us as a normal tap Dr.Bragg gets from 8-10ml per tap off. I don't remember for sure but think that atleast gave a little relief as it was sorted with what was going on.
The Neuro floor Pharmacists had ordered my weekly Enzyme Replacement drug so this was given Thurs. The floor Pharmacists and my Nurse ran the Enzyme Replacement IV Infusion which was good; a Nurse of mine who has ran it before was my Nurse for that day.
Dr.Bragg said the Radiologist had initially read the Xray as normal but once she looked at it she could see the problem. They booked an OR for an 'e-case' which turned out to be Thurs early evening.
I think we where about 1/2-3/4 of the way through the drug being infused when the OR called and I had to go down to pre-op.
Somewhat surprisingly my Team and the OR folks (Anesthesia, which was the same one as Tues) didn't ask that the ERT Infusion be stopped apparently so this ran during everything they did. I am not sure how that works with giving drugs for surgery during the infusion, (perhaps they stopped it temporarily) though the Nurses made it sound like they just let it go and once I was back to the floor my Nurses adjusted the final part. Not entirely sure. In any case just glad I had gotten it!
I should get released tomorrow, Monday from here which is good albeit I don't know if i'll be able to get my Infusion this wk, will have to call FMLH and see if there's by any chance any openings. Mine runs over a fairly long period so is not to easy to get an infusion spot the same week.
I don't feel great, I am hoping this resolves atleast a little in the next weeks while we sort when to place the 2nd shunt back. I am glad atleast Dr.Bragg is open to putting the shunt back in in a few wks but hoping between now and then the 'above and beyond' symptoms I have will resolve or calm a little! I am really hoping my body will just adapt to this smaller profile valve and work like the regular sized Codman Hakim valve did..
I had also switched my Infusion next week to Weds thinking timing for when I got out of the hospital original would fall in place to f/up next Monday but now I am unsure if that will work either! I know I see Dr.Kovach the 9th in place of the f/up I was supposed to do last Thurs so I am hoping it works out I can keep my Infusion to next Weds which I changed it to and see Dr.Kovach that Thurs (next Thurs, 9th) and hopefully follow up with Dr.Bragg this coming Monday. We'll see, right? It is amazing how 1 little extra surgery can change the best laid plans!
Needless it was a bit of a odd week, between the shunt revision and sudden 2nd revision on Thurs. On top of this all occurring last wk my Port worked fine on Monday when I got labs but then when we went to run fluids through it for surgery the Port wasn't flushing; turns out we where dealing with a clogged Port during Tues surgery and in to Weds where we got TPA (Altyplase) after numerous tries to open up and un-clog the cathethers. This has worked fine since then.
Thankfully by Weds night I believe it was we had the Port flowing again and could switch the Peripheral IV back to running through the Port. Always a 'Yippee' moment, honestly!
It has been a hard week symptom wise, I honestly am just beginning to feel like we don't have luck with the smaller shunt valves as this Codman Hakim is a mini version of the regular size. I am hopeful my body may adjust or when we put the 2nd shunt back that will make the difference.
On the note of the 2nd shunt I am not sure if my Mom asked Dr.Bragg about it or how the conversation came about but they did talk about it and Dr.Bragg figured (from my having talked to her to, the next day) we'll likely re-replace the 2nd shunt (VP location) in a few wks. She just said something like she'd want to give my body a little time, get through this stay and f/up with her in clinic and we could talk about timing then. It seems she is thinking give it a few weeks before we did anything.
Honestly I just cant wait for it to be done but I also get I think giving my body a break, it is all the longer the new heart med will have to work and we'll have an idea how my body does with this surger(ies). I am mostly just relieved to know she's going to put it back in!
And to even though I don't think this mini-Hakim valve works as well as the regular size 1 I can atleast say the back discomfort/nerve discomfort is much improved from a week ago! I do have some unusual side pinching type pain (ouch!) that is intermittent and these weird sort of swimmy/light headed like episodes. These occur mainly with certain things and hopefully will resolve to.
There are a few little things I need to talk to others of my Providers about but overall I think we're on a good path and so, so thankful as always to Dr.Bragg!
Will try to update soon,
Thanks for stopping by,
Erica
BTW: Sorry if this may be a little all over the place, not enough sleep does that. =)
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