She works at CHW, which is where my OHS will be this coming Thurs and I am next door (connected by an underground skywalk) at FMLH for my weekly ERT Infusion so she was able to come over later in the afternoon. This was nice actually as we where able to talk about the surgery planning as far as anesthesia goes. We talked about what she's considering as far as intubation (start with least invasive, work her way to more equipment which she realizes she'll likely end up using based on the past 2 OHS and my UW records/past but as she said (something along the line), I want to try and do the least invasive first. Overall I think we ended up talking for close to 1/2 an hr or more and as much about the surgery and other things to. She's one of those people I trust immensely.
Once intubated she's said she'll have to use almost an entirely different anesthetic regiment, if I got that all right than she has in the past I guess, due to my heart rate issues but this to she seems to have thought about a lot and re-reviewed my chart again. To quote her (indirectly) 'You've been in my thoughts a lot lately as I've thought about your surgery'. This is sweet and nice she admits as much and honestly I trust her anyways (sort of funny but she said to me something along the line 'I hope you feel confident in my care and trust me' (of course!) but is very nice to know when ones drs are putting their all in to making sure a surgery and care is as successful as possible! I am very grateful for this about Providers like her and Dr.Bragg, they'll admit these things and said as much to her.
Overall my entire team of Providers is pretty amazing, I feel really blessed for this and thank God before every surgery for these Providers! They make what could be really, really hard easier! I try to let my Providers know I appreciate their care and kindness and I appreciate that they truly care about helping me - I've always felt this is important. I said to Dr.Bragg how many of my Providers comment about her, either about 'how does Dr.Bragg do it' when asking how to do something (Aldurazyme most recently, how does she generally give it post op after surgeries in-pt) or how they can tell she is invested in what she does in my care. She in turn commented to me something along the line 'just think I know you very well', meaning I think she knows how to help, to read me and how to help make things better when it's not always straight fwd. - I feel really blessed that my other Providers realize how good she is and I feel blessed in reality to have an entire team of Providers who in many ways are like her, they all show they care and want to help.
Anyone with a large team of Providers (in my case 14 or more Specialists and my PCP) knows how unusual this is! For some reason Dr.Taylor and I got to talking about this today (our conversation really was all wide spread) =) and I said, to me it's important to realize (and I often say to other rare disease families who comment to me they wish they had a team like I do) that to have a good Team of Providers one generally has to be choosey and most often ones Providers are not all going to be at 1 hospital system. - Mine are spread in 3 cities and 2 states.
Sedation wise she (Dr.Taylor) had commented in her email she felt it was important (as she has commented in the past) we do it differently after this OHS, perhaps like we did after the 1st OHS, either longer intubation and sedation to allow better healing (biggest issue we feel waiting till the hest tubes are removed) or leave sedated initially with intubation but then extubate probably after 24hrs as was done after the 1st OHS but stay in the CVICU longer so sedation can be kept and pain mngmt be better kept on top of while chest tubes are still in place. -
Admittedly I had not realized before today that apparently after I was extubated after the 1st 24hrs following the 2nd OHS they must have moved me from the CVICU to a different floor where sedation wasn't kept (this I knew) and pain not able to be kept on top of as well. I remember a post my Mom wrote on my fb, something about being moved but I never knew what that was about, guess I do now. =) Funny the things ones mind blocks out, probably for sanity sake!
As Dr.Taylor said and I completely agree, the sternal incision where they cut down your chest is uncomfortable but not as painful as some surgeries I've had, (ice works/helps well) bc there aren't nerves there. The discomfort I had initially after the 2nd OHS was definitely, initially from the 4 chest tubes in place yet and being completely awake. And as Dr.Taylor said when they offered to give sedation before removing those 4 chest tubes I should have taken up their offer - that removal was a beast, an aweful one and partially I/we believe what made recovery so aweful!
She's talked to her colleagues, both apparently in Pain Mngmt (she commented the person on call the day after surgery is really good and she feels will be really good for my care/any needs, she gave them a run down on our past experiences). I am glad she's talked to her various colleagues!
As far as anesthesia she said in her email yesterday due to the mitral valve and being sicker I guess than both OHS prior her anesthetic mngmt will be vastly different than both OHS 2.5yrs ago. Part of this having to do with our heart rate issues and one of the meds she used the other heart surgeries can affect or increase heart rate which is/has been a significant issue for us and something they want to avoid during this Open Heart Surgery/MV-Replacment so she plans to avoid that and use a different sedation plan.
This in turn means she is formulating a different plan and approach if I understand it all correctly as I mentioned above. The other concern Dr.Mitchell has had was the small potential a pacemaker could be required after this OHS due to my already fast heart rate and of course- though none seem to concerned that they have to place a chest tube in the R side pleural space, which is where the VPL Shunt drains now. Hopefully, a chest tube in fact won't be needed..
I often think it is sweet how many times Providers of mine have said or commented to me something along the line my ability to negotiate my care, manage decision making and get this in place. Dr.Taylor in her email the other day commented something along the line about this and (my paraphrasing ) 'You could teach me a thing or two'.
While I doubt it's true I could teach my Providers anything about Healthcare and managing it/complex care, it is nice to know when they think I am doing a decent job given I do this mostly on my own - (getting things in place, getting insurance coordinated, getting my Providers- who are at multiple different hospitals and health systems to coordinate with each other (most are great about this! ) and just making sure little and big things are in place. I should add I do have a pretty great Team of Case Managers of course with Amy, at Genzyme re the Aldurazyme when needed and Marge, at Dean for Prior Auth's when needed. I do appreciate both of them and my Team of Providers and their Nurses, Secretaries and NPs!
I don't know if she has and from talking to Dr.Taylor today I feel confident in what she has told me/who she has informed of our past issues and upcoming surgery but my Pain Mngmt Dr. (Dr.Bratanow) at last wks Appt was talking about sending her recommendations to my Heart surgery Team so they know to reach out to her if there are any questions with post op pain mngmt.
My NP at Dr.Earing (my Cardiologist) called Thurs last wk, she had talked to Dr.Mitchell (my Heart Surgeon) Nurses who must have heard from my Genzyme Case Manager re the ERT (Aldurazyme) drug I receive every wk and ordering that.
Nancy (NP) in turn had some questions for me about how it's given, what they may do with it after surgery, etc which I am glad she called and glad they are sorting this all ahead of time! Super grateful to my Genzyme Case Manager for working on this and helping get it sorted w my Cardiology Team!
On a side note I think I will be happy when this OHS is over and perhaps just sitting in the chair reading I even feel short of breath? This is not a constant issue, thankfully (!) though but still occurs frequent and often enough!
In all honesty it seems a little hard to believe but less than 3 days from now and surgery should be over, for that matter 3 days from now the surgery should be over and recovery in process? God willing! I was talking to 1 of my Infusion Nurses about what to do with next weeks infusion whether to cancel it or somehow put a note in the system that I likely wouldn't be there but being concerned if say surgery where to get cancelled when Dr.Taylor came in. She overheard and commented, 1/2 joking "It's only getting canceled if you cancel on us" - lol, I am not cancelling. Can't say I am looking fwd to the surgery but as I said to Dr.Taylor I am looking fwd to it being over to.
On a totally separate note, Headaches have been better since we put the 2nd shunt back in and things improved once we adjusted the shunt settings down. Not perfect by any means but they had been better. Oddly enough, perhaps the best thing about this (and this is way TMI) but bowel movements had totally normalized - this always occurs when we have the shunts in a really good spot. They've just started reversing back to a more abnormal again after headaches have been a little worse in the mornings again so that is a little crappy (lol) but hopefully not a sign of shunt problems to come? I am hoping, I so want these good times with the shunts to con't, even if mornings are a little worse it's still overall been better than it had been in a long while!?! I am hoping stomach and overall doesn't get worse and overall stays good!!!!
If anyone wants to visit (I know a few friends in Milw are planning to as are my family) I will be at Children's Hosp, - visitors always welcome! Any and all =)
In any case, I will try to do a short update after the pre-op Appt Thurs., and my Mom will likely do short updates here and on my fb for the 1st few days after surgery.
Thanks for stopping by,
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