Valve Replacement surgery moved up, Other details. Pictures.

I've been writing myself notes and saving this as a draft for a few days now but have a surgery date change so will update all of the other minor things to while at it. :) I was watching my nephew today who despite being a bit of a grumpasaurus rex a bit of the time was as is usually the case so much fun to be with! Always makes me laugh in the funniest of ways! I happened to check my phone while we where at the pool (one of the Aquatic centers)  to see there was a VM from Children's Hosp. which was a little odd so I checked this and turns out that Dr.Mitchell (cardiac surgeon) was requesting to move the surgery from next Weds to next Tues and to Children's Hosp. vs at FMLH. The surgery had been scheduled at FMLH, next door but Dr.Mitchell has to go out of town apparently on Thurs or Fri and so wanted to be able to be there for the immediate post-op before handing me off to his partner (who also does Peds and ACHD pts) for care. My Cardiologist is also at this hospital so will be around I am sure from what he has said and those I've known who also see him have said in addition to being in the OR for the surgery. In addition per this Nurse/scheduler CHW's surgery team does a completely different and more in-depth pre-op than does FMLH plus they require it be done the day before surgery. That, my friends also happens to be infusion day. Go figure! Atleast at the same hospital but the infusion nurse can't make it in till 9 so I wouldn't get done at minimum till 1:30 but likely closer to 2:00.  Beth, the person I talked to today had asked if I could do their pre-op plus meet with the Anesthesiologist at 1:00. We are still sorting that timing out. I do think it will be a good thing to meet with the actual Anesthestiologist doing my case ahead of time and she (Beth) recommended I do bring in the Anesthesia records I have from UW's team as well as any other notes or records that might be pertinent. So far I will likely just bring the anesthesia reports and Dr.Bragg's most recent surgery and clinic notes though I do think her nurse was also going to fax those to Dr.Mitchell's ofc today. I figure it never hurts to have copies on me just in case. Otherwise I think most of the details of the surgery will stay the same other than it is now Tues instead of Weds and I will be at CHW instead of at FMLH.

On a side note I did schedule an Appt for Sept with the Rehab dr that Dr.Bragg and her Nurse recommended as she is likely going to take over the botox and that will be the next 3 month point (how often the botox series is given).

I have been talking with my Pain Mngmt dr via texting the past couple days on and off and she planned to call the Cardiac Surgeon to pass along her pain plan recommendations with I believe her general recommendation being they follow what we have used previously at UW, post-Dr.Bragg's surgeries.

Ironically beause I did the other pre-op at FMLH last week and has done a whole slew of lab work the NP (form pre-op) had called earlier this week and  was calling in a 5 day course of twice daily antibiotic for a UTI.  She did comment that it was so mild I probably wasn't even noticing the symptoms (which I am not) but bc of the surgery they needed to treat it/get ahead of it. Given I usually would end up w a UTI after most of our shunt surgeries I guess I can see why it's a decent idea.

Otherwise the last bit of news I was talking to my Sunday school co-teacher the other day and the 1st meeting for the next year is next Weds (boo)  though there will be a 2nd pre-start of Sun School meeting later in Aug. or early Sept.  In that mean time in addition to some data I was putting together for GSF I also have been compiling per my Co-teachers request the websites I frequently used for lesson and activity related ideas last year; I don't remember a lot of them as it was often more specific to what each lesson focused on but was kind of fun looking back at what I/we all used last year outside of our actual Teacher/Student manuals/lesson books! :)

Here are a couple pics of Zander from today; very fun, we took Aby, one of the WEAP (autism) teachers with us to the Aquatic Center which Z completely loved. :)

Thanks for stopping by, if not before my Mom is going to update atleast once after the valve surgery next week and I hope to pick back up with it within a few days.

Erica

ps Thanks Jill for the email and I to hope this is similar to the spine surgeries; not awesome surgeries but tolerable!

Neurosurgery fup, records, etc.

I followed up with Dr.Bragg today which went well, she removed both sets of stitches (2 incisions) which is nice because the ones in my thoracic (back) incision where crazy itchy. She commented these looked to be irritated so it is nice to have both sets out!  For whatever reason dissolvable stitches never seem to actually dissolve or atleast not quickly and Dr.Bragg often ends up just removing them.
I asked her if she knew off hand what doses they used when I was in-patient for the pain med (PCA) for past surgeries and so her NP, Sue was looking up this info after re-adjusting my Thoracic shunt and was going to call me either late today or early next week with the info as she wasn't able to just copy/paste and print this. I'll then be able to give this info to my Pain Mngmt dr to give to my Cardiac Surgeons office. Dr.Bragg also in not realizing the valve replacement surgery was so soon (she had thought it was planned for August, I think partially bc I initially posted the wrong info to fb and elsewhere) recommended I fup with her a month after the open heart surgery-valve replacement as we can then begin to plan for removing the thoracic shunt from it's current location in the peritoneum and move it back to the pleural space where it resided up till a month ago - as most who read this know we only moved the catheter due to Dr.Bragg and my Cardiologist having concerns the shunt continuing to drain in to the pleural space while they also would  need to place bilateral chest drains for the valve replacement was a problem waiting to happen and something they wanted to avoid. We also opted to turn down the Thoracic shunt today as Dr.Bragg commented we could always turn it back up if need be next week (I would just have to call and let them know, but seems fine so far) she felt we should try to maximize symptom improvement with the shunts ahead of the valve replacement and so the TPS is now set at 40 while the VP shunt cont's to drain at a setting of 50. Last she gave the 'all clear' to go swimming again, which is great as I wanted to take Zan tomorrow! She had seen pictures I posted last week from Quinn and Lis'  being here from having taken them swimming and commented how she felt it was close enough now to be able to safely go. =)

Otherwise I saw one of the Occupational Therapists at the Hand clinic this afternoon and she just did a few things to help with the scar tissue that is forming around the Hand surgery incision (ultrasound, desensitizing, etc) and I fup w that clinic next Fri + then the following Tues once more before the heart surgery.

Yesterday's Pain Mngmt Appt with Dr.Bratanow went well, other than when I got there as seems to occur every few months (and quite irritating) her Secretary will give me a date and time and then apparently never write the information on their master schedule. Grr!! Dr. B thankfully saw me anyways I think especially bc she knew the heart surgery was coming up and knows this scheduling issues happen  more often than not through no fault of mine. - She (Dr. B.) plans to talk to Dr.Mitchell, the Surgeon about her recommendations. I will talk to Dr.Bragg tomorrow (see above) and try to remember to ask her what exact med regimen she has used in the PCA post-shunt/spine surgeries as this has worked well.

I also saw the Dentist for the 2nd time this week to try and get some dental work done before the heart surgery, the Hygienist (who I could have jumped up and hugged for doing so) said to the Head Dentist today when he was checking my Dental Student's work that he (the dentist) couldn't lay me all the way back as I had CHF (heart failure) and was unable to breathe laying back fully and commented to him that they had been doing their work mainly sitting up. She also made sure the Dentist when checking the work to sign off was aware that no, in fact I couldn't open my mouth any further due to the underlying issues and so they where all working in limited space but making due. Definitely no fun but grateful for people like this Hygienist and the Student-Dentist who are willing to work within the confines needed to get the work done and still try to make it as reasonably comfortable for me as possible. Glad to be almost done w this!

Trying to still sort out specialists sending their records to my PCP (primary dr) as it seems to date the only providers actually sending her notes are the in-network specialists and my Neurosurgeon. The rest are apparently still sending notes to my former PCP? This despite my "new" PCP being listed at all hospitals as the primary dr of record so I am completely confused why this still is occurring and have been asking various specialists to send their recent records to the new PCP so she can review and be up to date on what is going on other than what I tell her. She is very good and does a good job at keeping my records up-to-date so I really want to figure out how to get all of the specialists to send their notes directly to her! Definitely never ending something to always be dealing w or sorting out medical wise!

Last but  not least here in the blog co-written with NORD's RN and posted on the Rare Disease blog.
Blog written with NORD's RN
http://blog.rarediseases.org/an-ordinary-day/

Thanks for stopping by,

Erica