The 28th, which was our original surgery date to trade out the current bigger sized TPL Shunt (programmable) valve and replace it with the smaller (but otherwise exactly the same minus having a reservoir to tap (draw CSF off of, test shunt function) Codman valve which would be more in-line with the catheter in my back-to-side and our hope is it will be less noticeable when I move, sit back, bend down, etc. I hope!!!
I am praying ever so much God will answer this prayer and this valve will work more finely with my body type, comfort wise! I almost feel guilty admitting I have been asking in my prayers for God to guide Dr.Bragg and myself in this surgery the 28th, that the valve may be more fitting and comfortable.. That surgery b/c it would require both being on my back and (I think) side or stomach to access both incisions for each part of the surgeries will be general anesthesia (honestly makes me feel more comfortable than the very rare occasion we use sedation as I've known to many who ended up trached when sedated surgeries went awry and the Anesthestiologist then couldn't get a secure airway.
Needless worry you might say but in our community, no matter how confident a Anesthesiologist is ones airway can change drastically under a stressful situation and when ones airway is already tend towards being difficult to access... I tend not to worry as much about the things I can't control, I believe you do what you can to prepare, educate and be aware but you can't let "what could be" rule your life. I still believe that applies when it comes to Anesthesia but I do think for airway and surgeries, it's soooo important to reiterate over and over (even if your feeling blue in the face find a different way to get the point across!) as this is an issue that has caused tremendous issues for a lot of MPS I Individuals.
The reason I say any of this is b/c I felt like I was perhaps beginning to perhaps be annoying or something, it's not even that the Anesthesiol made it seem that way but I also don't think he was completely, really getting what I was saying and instead was just trying to placate me; anyone who knows me knows I HATE when people say something they think you want to here! This all said I didn't dislike this dr and have had him once or twice before, more I just wish he would have sat back and listened for a minute or two without clearly already having a response on the tip of his tongue! I did understand what he was saying but I think very few Anesthesiologists understand how from one surgery to the next and back our airways change ie one day is a relatively 'simple' access, the next day may be extremely difficult (Dr.Taylor at CHW pointed this out and explained it VERY well in her experience w/my airway and 2 OHS how different each experience was!)
The Solu Cortef was given 30mins prior to surgery and Plasma (2 bags) which acts as a quick clotting agent to counter act the Coumadin (and high INR) was given as well starting about an hour before surgery and continuing to run in via the Port/second line after I was asleep and surgery started. This is given to bring a to high blood thinner (INR) level down to a safe for surgery range so a patient doesn't bleed out on the table especially in some higher blood access surgeries.
The ice is the best at the moment actually at semi-numbing the surgery incision area, my headaches, un-related to this surgery (but I do think VP Shunt related) have been on and off all day but probably just seem worse b/c of no sleep over night and thus really tired today between not a lot of sleep Weds into Thurs and then no sleep Thurs in to Fri + the anesthesia. Unfortunately the IV steroids probably won't make for great sleeping tonight either as the next post-surgery dose is 12 hrs post-op, so roughly between 10-12pm tonight and steroids have an odd side effect of amping a person up without actually giving you a real energy boost (atleast for me!)
I almost always request not to have the pre-OR rm sedative (makes me feel really weird, makes waking up from actual anesthesia much harder) so when in the OR, on the table while everyone was doing their thing, prepping, confirming information, hooking up monitors, etc. the Anesthesiol. jokingly asked me my MR # (which I don't know), but Dr.Bragg standing to my L piped up and recited it by memory, "b/c I say it so often dictating your notes"! WOW! =) Made for a good laugh while going off to 'dream land'.
Labs look good so far, in the past CSF infection has showed up as late as 5 days on several occasions! But as long as CSF cont's to stay clear (would be a good thing on all of our parts, a reason to mini celebrate I think!?) we will be able to wait to completely move this VP Shunt valve (Dr.Bragg plans to also use a smaller profile one than is currently implanted, less prone to breaking down the skin) to the L side during the other surgery for the TPL Shunt the 28th. =) I am celebrating in a joyful way at least that so far all labs are looking promising and that part one of this un-expted surgery for the VP Shunt was a success today! =)
Visitors tonight (my Co-Sunday School Teacher, and the other is my PM Nurse, Evey)
I'll update again when or if there is any news,
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