Monday, July 29, 2013

Day 6 Post-Valve replacement/Cardiac surgery..

So what was done was still a little confusing to me but in the open heart surgery Dr.Mitchell took out the aortic valve, did an aortic root expansion (to be able to put in a bigger aortic valve size, better efficacy) and put in an Aortic-St.Jude Mechanical valve 21 size. Chest tubes where removed post-op day 2 (Thurs) and Ventilator was removed post-op day 3 (Fri) a.m. Right now they only have the EKG/Pulse-Ox monitors on (many leads, 6 wires) and as of this morning (mon) are only running Clindamycin 2x's per day (IV Antibiotic), while the blood thinner level(s) was within their target INR level today so the IV Heparin was stopped and oral Coumadin just continues daily. I off hand can't think of anything else that is being run through the IV but it is NICE to not be soooo tied down (I can semi-easily temporarily disconnect all the wires and so other than with PT this morning am going to go for my 1st solo walk in the hallways/around the hospital tonight!!! I am on isolation measures just like at UW though a different bug and so have to gown up in the pretty (kidding) yellow gown and wear gloves but still I can leave my room! Considering I am pretty well bending like normal, got myself dressed including socks and have semi-washed up (teeth, face, deodorant) I feel semi-human!

The past few days daily Chest xrays in addition to the daily Labs have been done. The Xray to look for heart swelling/retaining fluid, the labs to check INR (blood clotting-blood thinner levels) and tomorrow other tests will be added with the possibility of getting out Weds! Amazing actually considering I was a "high-risk" pt and Cardiol. thought i'd have a super tough post-op recovery! With staying on a very regular pain med routine and almost constant ice on my chest and neck I have been able to get the discomfort down to a 2!
As far as the future and meds my Cardiologist said it will take time for the heart to re-model as it is so thickened and the muscle so over-worked right now from the so severe aortic stenosis but we should be able to eventually remove some meds.. He thinks we'll be  able to wean most of the cardiac meds (minus the  new, daily blood thinner of course) though he expects this will take some time for the heart to return to a "new normal". I am just happy we may eventually get to get rid of or at least vastly reduce the Lasix and the other 2! Aldactone and Bisoprolol (water reducing med and for reducing strain on heart) these 2 meds though milder in nature (how they affect day-to-day life) would be great to remove to and so I can patiently wait! Dr.Earing did bring up about having to eat a semi-consistent diet which is something  I don't do and food in general is something I eat only when hungry vs regular meals as most do. Different diets can affect the Coumadin level and so by being consistent it helps the target level stay more consistent thus less dose switches, less having to think about the med and less eventual blood draws if we can get the INR to a stable day-to-day level. Yikes on that one! He recommended to his NP that Dietary come by and help sort this out as I admittedly have some learning to do on this med.
He also said despite the Mitral valve looking "awful" on Echo's that this appeared fairly mild on the trans-esophageal (not sure if that's the right name off-hand) Echo and he expects it will "(hopefully" as he put it) stay stable for some time now especially w the aortic valve fixed and the heart not having to work so hard.

One of the ironies of this week has been while I get the weekly enzyme replacement drug literally right across the walk-way in the Genetics clinic I apparently am not going to get the drug while in-patient for multiple reasons. 1 reason being they cancelled the normal Genetics Infusion clinic since I was having this heart surgery and so there is no nurse there (understandable) + I guess the floor nurses aren't comfortable infusing It (talked to the Head Nurse and she knew nothing about this, was going to page the Resident and if Pharmacy would do it she had no problem giving it! - She said they sometimes have other 'enzyme' kiddos they do while in-pt on the floor!. This is amusing bc we where always able to get the drug at UW for the past year now anytime I was in-pt (ordered by UW, paid for by Dean, sent to the Neurosurgery Pharmacists and run by the floor nurses.) Not a big deal. Genetics told the Resident it wasn't a big deal to miss on a week post-surgery given I was more susceptible to a reaction when my body may not be at it's top immune response wise (??).. Given I have had the drug literally probably a dozen times in this scenario I told the Resident I thought that was a crap answer and Genetics just wasn't wanting to deal with how I might get it infused while here. Sooo weird!!!! Not as if they have to do anything and someone would just have to walk the vials of drug over to my floor!

To be Cont'd.... Stay tuned and do plan to call my GC tomorrow to try and get her help to solve this as if the Floor Nurses will do it and HAVE done the similar drugs before then should be no big deal!?!
Thanks for stopping by,


Saturday, July 27, 2013

Cardiac (Valve) Surgery day 4 post-op

This is Erica, from what  understand (I've posted several different things in fb, different uodates I had been given) and anyways so it sounds like the Surgeon enlarged the aortic root to be able to put in a bigger mechanical aortic valve and then replaced the aortic valve.  They finally took out the respirator/breathing tube on Friday morning (surgery was Tues morning) and also had out the 3 chest tubes, took out the foley catheter and some of the monitors. The breathing tube was intra-nasal which was actually kind-a aweful getting removed, picture a big worm snaking up the back of your throat; very gross! I was able to sit up in a recliner by later Fri afternoon and now a matter of getting a "target" blood thinner level plus ironining out any other med changes. I did get moved up to the Peds Cardiac floor (out of the cardiac ICU) Sat. afternoon.

Orherwise the reason behind (maybe Mom wrote about this) for having left the respirator/breathing tube in place so many days was that the Anesthesiologist felt like there was to much trauma to the airway and to difficult of an airway to risk extubating and then having breathing issues + not being able to get a new airway without having to do a trache. Unfortunately I remember most of the last 2 days w the airway other than when I was asleep including their frequent suctionings. I am glad it is out! This Anesthesiologist commented she was very surprised at how bad the airway was based of my looks and she had, had a colleague actually that same morning who had another MPS I kiddo and so they where comparing notes and what they each did/used. She made the comment she broke out every possible support she could to get the airway accessed and that I should not minimize this issue to future Anesthesiologists as the notes I gave her from UW's team did not do justice. I will request copies of her access/Anesthesia notes for my records to.

Otherwise just a lot of watching and waiting, am able to get up, the pain is no where near what I thought it would be and more or less just a burning-type sensation in the chest and deep tissue/muscle achiness from lying down so much. It feels nice to move and using lots of ice and heat sometimes alternating sometimes together.

Will update when or if I know anything more - thank you so much to everyone (friends, providers, Pastors, etc) who have left kind messages, said prayers and offered support - you ALL mean a lot! Especially kind of providers like Dr.Bragg (Neurosurgeon) who sent multiple kind messages letting me know she was thinking of me on the night before and day of surgery as well as that the Nurses and her staff had been asking her all day for updates + she was definitely keeping them up to date for me. Several of my nurses from CHW also stopped by several times. Very kind!  On a side note I have been able to sleep on my side some which although I am not sleeping much to begin with has definitely been better than I had thought it would be! The Surgeon/staff are also working to get the ERT drug from Genetics (also here at CHW) sent over so they can keep this on track and as normally scheduled for Monday. I also ironically had one of my former UW Nurses who moved to Milw while in the Cardiac ICU the other day! Very nice, she was always really sweet and super patient while I was in and out of consciousness on the ventilator/breathing tube. =)

Meds are all the same and apparently will stay the same (Lasix 2x's a day, Aldactone (both to reduce fluid load) and the beta blocker + the new Coumadin-blood thinner.
Glad this is mostly behind us now,


Thursday, July 25, 2013

Erica and her Mom are impatiently awaiting the doctors to take out her breathing tube.  She is asking if I updated her blog and facebook.  I told her I did.  I also told her she has a lot to read when she wakes up.  She is spending a lot of time sleeping -- the doctors said when they take out her breathing tube she will start sitting up and "things wills start happening".  Well, her Mom is READY for her to sit up and get that breathing tube OUT.  More tomorrow.

Wednesday, July 24, 2013

Don't have much new tonight.  Erica is still hooked up to a lot machines (including respirator) and can't talk.  I told her I posted to her blog and facebook so everybody would be up to date.  If everything goes okay tonight (Wed) they are taking off the respirator tomorrow--I hope everything stays okay.  Thank you for all your prayers and kindness.  We (Erica's family) appreciate everyone's thoughts and prayers.  More tomorrow..........Mom
Erica's surgery went well.  She is still hooked up to a lot of machines that will hopefully come off today.  Will post more tonight.

Monday, July 22, 2013

Pre-Op Appt, testing - Children's Hospital; Surgery plan.

After ERT (Infusion) which is also at Children's I headed over to CHW's main hospital for the Pre-op Appt which ended up being about 1:45 to check-in today. This ended up consisting of the actual pre-op Appt/eval with the Nurse and PA (both very nice, the Nurse couldn't say enough good things about the Anesthesiologist I have tmrw and talked about her own daughter having had open heart surgery 14+ yrs ago at CHW w the other Cardiac Surgeon and what a great experience they had. She after going over meds to take tonight and tomorrow morning, what time to be at the hospital, what additional tests they needed to get (wayyyyy more in-depth than the Pre-op Appt that was done at FMLH) and some of what to expect in the morning before surgery and then after surgery. It looks like I check in at 6:30 with surgery at 8:00 and they expect it to take about 7.5 hrs due to doing an aortic root expansion (to better fit in the mechanical aortic valve) and then place the mechanical valve once they have the old-diseased valve removed. As I've mentioned before they will look at the mitral valve once in-surgery and on bi-pass but are not expecting they will have to replace this particular valve right now. Post-surgery you go directly to the Cardiac ICU bi-passing post-op care altogether and the breathing tube will be removed either a few hours post-surgery or could be a day or later just depends on how things look.   I asked about post-surgery if you end up on the same cardiac meds as what you come in on (can't wait to get off the high 2x's daily Lasix especially) and she commented she would expect these to stay the same once I went home although it was possible the Lasix may change and then will also add the Coumadin (blood thinner).

Other tests that they did today included the labs and blood typing, an Ultrasound to look at the femoral (groin) artery in-case they would need to do a catherization for any reason and repeat Chest Xray - if you see a green-glowy-ish person in the dark it probably is  me. =)    The PA went over the aortic root expansion surgery, the chest tubes, shunts/neck surgeries more in-depth as well as how he and my Surgeon had talked this morning about what would need to be watched out for (Shunts) and what avoided (Port) during tomorrow's surgery in addition to expected time line for when chest tubes and temporary pacemaker wires may come out. On a side note he did say it is possible the side chest tubes could be out by the time I am awake - I HOPE SO!!! That WOULD BE FANTASTIC! I know it may not happen but would be awesome no-less. =)

My Mom plans to update this blog and hopefully will do a few short updates on my fb page throughout the surgery - you can sign up for email alerts or as a 'follower' if you'd like automatic alerts from surgery. =) I hope to be back updating this soon!? =)
See  below for a few updates from earlier/late last week but thanks for stopping by,
 - On a side note one of my Pastor's plans to come in the afternoon and sit with my parents and stay while I am in surgery (as he has done in the past) which I thought was pretty kind on his part since I would imagine waiting could be kind of tedious and boring.
"To God be the glory all things will be done",

Written pre-Sunday 7/21
All (most) ducks are in a row, have reports I need/wanted to take to Monday's post-ERT, pre-Tues Valve replacement surgery pre-op Appt. including the past Anesthesia records, Dr.Bragg's most recent notes.  I think the clinic has these  already but also the notes from my Neuro-Endocrine dr as well with her pre/during/post Cardiac surgery-Cortisol recommendations.  I feel best about any surgery doing what I can on my end to make sure all ducks are in a row so I've just really tried not to think to much about the post-surgery waking up/recovery itself. I took my cats over to my parents tonight and so they are settled there and I've pretty well got my Apt settled/cleaned in a way it will be set when I do eventually come home - that part I can't wait for!! :)

I also wrote a couple things down to remind the Anesthesiologist(s) of on Monday/Tues as well as the Cardiac Surgeon INCLUDING to STAY AWAY FROM the Thoracic Peritoneal shunt tubing which Dr.Bragg has brought up several times to remind the drs they will be working (with the chest tubes) in the same areas as this particular shunts catheter (the catheter though no longer in the pleural space for now does still run over the lung space where chest tubes are placed and to make sure they do not accidentally cut or otherwise adversely affect the thoracic shunt as we'd be in  a bad way, especially given Dr.Bragg is in Madison and the surgery is in Milw.!

On a completely different note and somewhat un-related I can't say enough about my PCP, she has only been on my team for just under a year now and seems to have learned a lot (as I think I've written about before) about the MPS, underlying issues and how all of it impacts each other both big and small with the various surgeries. I was reading her pre-op note from the Hand and Shunt surgeries in June and the day before the Hand surgery just out of concern (bc of the heart failure) she had called my Cardiologist to make sure he was still ok with my going ahead w the hand surgery (her words "a high risk patient for a low risk surgery") and to confirm his wishes with the anesthesia so she could then directly relay that information to my Hand Surgeon whom she also called. She wrote a lot of the same thoughts and notes regarding the Shunt revision  "a medium risk surgery,  high risk patient in a required surgery in order to move ahead with the cardiac valve replacement surgery." I just appreciate that she factors all of the big and little things in, that she keeps me so updated on her thoughts and she does an amazing job actually of communicating with my various specialists as needed as well as updating all the little things in my health history. I am sure she is busy in her practice and yet she takes the time to go out of her way to keep me updated, talk to various of my specialists and really try to help.

Since I do vent quite a bit about healthcare I think I should probably be fair and share the good aspects of my care and the good providers I have on my team as well! - Be well all, thanks for stopping by. - ET.

Wednesday, July 17, 2013

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.


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

Friday, July 12, 2013

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

Thanks for stopping by,


Wednesday, July 10, 2013

Pre-op Appt, Heart Valve replacement surgery. A few pics (Bay Beach, 4th)

For all reading this, obviously I already had the pre-op Appt today but no-less please consider any suggestions I should still ask? I have (had) the Cardiothoracic Pre-op at FMLH (Froedtert) on Weds, any suggestions or things you think I should specifically ask/remind them of? - I did request copies of UW's Anesthesia records (just the last 6 mo) and Dr.Bragg advised me to remind Dr.Mitchell on the day of surgery that when placing the chest tubes they need to be weary of the Thoracic shunt catheter as it runs down/over the same area chest tubes are typically placed. I know Dr.Maas has also faxed over her Endocrine-Cortisol recommendations and though she is on vacation that week advised one of her partners of my case if a consult where requested. I am not to sure what else I might be forgetting if anything?

Some of the things I kind of knew and which  l learned today include that surgery is expected to take anywhere from 4-8 hours with arrival (as of now) at 5am and surgery itself scheduled at 8:30am. My Surgeon did not think he would have to remove the Port-a-Cath but also said it was dependent on surgery and what all they end up doing (apparently) and in my Cardiologist's last clinic note he mentioned his recommendation would be to remove it at the time of surgery to minimize infection risk. The NP today thought it would be ok and would be able to be used once surgery itself was completed. Tests done today at pre-op where pretty standard including EKG, Chest Xray, 7 vials (!) of blood and meeting w the NP. A test to look at the arteries in the heart was done previously and was fine. Bactroban a type of infection preventive is used intra-nasally beginning 3 days pre-op as well as the more standard hibiclens the night before and morning of surgery.  A trans-esophageal Echo is done before the valve replacement and then again to check it's function post-replacement. All lines (arterial line, a direct line (in the neck) into the carotid artery, temporary pacemaker lines, chest tubes, and breathing tube) are all placed once anesthesia is commenced and I am fully asleep. These all generally stay in place for 3-4 days post-op minus the breathing tube which may be pulled as soon as 3-4 hours post-op once stable in the ICU.  They also have the cortisol dosing recommendations per my Neuro-Endocrine dr and the NP planned to share these w whoever the Anesthesiologist will be as well as she was able to pull up my records from UW's Anesthesia (Dr.Bragg's surgeries) and will share those. I emphasized multiple times how important it was that the Anesthesia team at FMLH no matter who is assigned to my case be made aware of my airway issues and be made to review UW's records. Anesthesia has not often went well at FMLH in the past so I am pretty uncertain about this aspect. =/

The things to be sorted out yet include as mentioned above Anesthesia, making sure they follow the same plan that UW's team has put together and used over the past 2 years with Dr.Bragg's many shunt surgeries. In addition the other big thing is I see my Pain Mngmt dr tomorrow and putting together  a post-op pain care plan with her and having her talk to my Surgeon/team about her recommendations. The NP today said they could utilize the FMLH Pain Mngmt team but I definitely pushed that I want my own PM dr involved in decisions! I also need to remind the Surgeon and team on the day of surgery, per Dr.Bragg that they absolutely need to be careful of the Thoracic shunt as the lines they place for chest tubes go in to the same general area on the one side as where the Thoracic shunt lies. The programmable aspect of the VP and TP shunts should be ok during and post-surgery. I do see Dr.Bragg Friday for post-op fup and hoping she can remove the dissolvable stitches from the Thoracic shunt surgery 2 weeks ago as these are incredibly ITCHY. I am not to sure if she will suggest or we will decide to move down either of the 2 shunts settings, on one hand I think we should and on another hand I think maybe we shouldn't? I guess i'll talk to her then, the reason  I tentatively think not to is what if it was to low, then i'd have to call them back and have the shunt(s) re-adjusted again which I super don't want to have to do. I'll see what she (Dr.Bragg) thinks, in all reality I really think the reality of us having to turn the shunt setting back up if we did turn it back down is pretty slim as long as we only did one setting change which is what Dr.Bragg pretty much always does. It really is up to her anyways.

Otherwise the only other new thing is the Hand surgery recovery has been well; I finally got to take the splint/case off for good last week and the only real issue is that the area around the scar is SUPER sensitive and so I definitely hope OT has some suggestions for this. I don't remember this much sensitivity w other surgeries but there may have been.

Alissa and Quinn (niece and nephew) came last week after I picked Lis up on Weds and Quinn up on Thurs which though incredibly tiring was also a lot of fun. Friday we as a family all went up to Bay Beach, the amusement park by Green Bay and then after taking the kids swimming Sat. afternoon we celebrated Quinn's 11th Bday party on Sat night and they all went to the races while my other nephew Zander spent the night at my Apt. Very fun. :)
                            I don't have many of the pics from any of those days on my computer desktop.

Monday, July 1, 2013

Few Appts (yay!), A Shunt adjustment, Some Fun too!

A quiet week of (hard to believe!) no medical appts other than ERT (Infusion) today which since I am the only patient left in our particular clinic the Nurse and I sat out on the front grass of the hospital/clinic for about 2 hrs of the infusion. Very Nice! This week (weds) is also my Nurse-Case Managers last day at Dean (Health Plan) which we basically wrapped up today and ended by saying we'd talk again soon as she wrote down her cell # the day we had met at DHP a couple weeks ago and had asked to stay in touch. =) She gave me the contact info for the new Nurse-CM taking over my case so I've sent an email to that person and a new journey with another new provider (in a sense) will start. If MPS has taught me one thing it is how to let go of the good ones even If you don't want to, many keep in touch and sometimes (like when I switched PCP's last summer) turn out to be hidden blessings. I am unsure if anyone can top PK's dedication to figuring out referral/med/health plan-provider issues but I do think you break some one new in and the good ones mold and learn! On a completely different, un-related and short note, be glad your not in the hospital today, it is 'National new Resident/Intern' Day across the US. Who knows maybe one or more of those newbies will be the next 'MPS rockstar researcher/provider?! =)

See below for the backstory but each day has been getting even less of the over-draining since we adjusted the TP shunt (new valve) setting back up to a higher setting and though I still intermittently get high pressure and vision issues (more with trying to concentrate/read things be it a book or short articles, etc.) I do think having these 2 like shunts is going to be GOOD!! A friend suggested to me to ask Dr.Bragg at fup about setting each shunt once I have fully adjusted to 2 different settings be it like 70/50 or 50/40 see if that makes the shunts I a sense not get compliant? I actually have no idea if this can happen since shunts can't "think" but if both are set at the same settings to drain do they work less well at draining? Who knows!  The fup appt is next week, which worked well w picking my niece up this week actually although then next week is appts every single day M-F so good and bad!

We are if it is warm Thurs taking the kids along w my sisters and her family and my parents to Green Lake for a picnic and the kids can swim/play. Friday my parents and I are taking Quinn and Lis to Bay Beach, an Amusement Park near Green Bay which is something we did every year when we where young and have been doing every year since Quinn has been pretty young (he will turn 11 on the 7th). Should  be fun! Sat we are having Quinn's Bday Party over at my parents house, a little bit early but we figured since Alissa was here and before we took her home Sunday.

Next weeks great fun includes in addition to the usual ERT on Monday at CHW, seeing Dentist on Tues, Cardiac Pre-Op on Weds and whatever that all entails (through Surgeon's ofc vs through my PCP), Thurs is Pain Mngmt fup (all in Milw) and Friday is Fup in Madison with Dr.Bragg. Fun, i'm sure.

June 27-28-
We switched the Thoracic Peritoneal shunt back up to a setting of 50 today which is also what the VP shunt is set at as I was having intermittent but very uncomfortable symptoms of over-drainage (when it wasn't the symptoms of over-drainage it was almost like it was the opposite high pressure, very odd!) I could tell within a few hours that our having turned it up was the right decision and a lot less of the over-drainage symptoms though not perfect. My Dad had his phone off as he had forgotten to charge it I guess and so I couldn't get ahold of him and then once I did I was on my way to Madison already. What a drive and not because I was unsafe bc I wouldn't have driven there if I didn't think I could do it reasonably well just more that I normally don't mind driving and this time seemed like it took forever and just wanted it to be over! By 1/2 way home was definitely starting to improve. After having spent the better part of the past 1 1/2 days on the couch other than going to that appt today I am glad to be feeling a little more reasonable if still not awesome. Days like today are really one of the few times it seems like living closer would make more sense; not sure I am ready to do that though! I fup w Dr.Bragg in 2 weeks as the stitches on both incisions are dissolvable (usually takes about a month).

Dr.Bragg and others keep commenting how they think the heart valve replacement surgery will make a huge difference for the headaches and shunts; I can't help but wonder if it will? Given there will still likely be moderate mitral valve leaking unless they get in to the open heart surgery and opt to replace both valves will this help the headaces? Replacing the mitral valve as well is an option they aren't completely ruling out; will just depend what they find on direct view as the Surgeon and Cardiologist who will be there plan to replace the aortic valve and to look at the mitral valve. I do know the Surgeon has said he thinks this surgery will improve the super low blood pressure and help heart rate so maybe that in turn helps headaches related to pressure? I don't really know. Would be a nice side benefit, Dr.Bragg had explained how the heart surgery could possibly benefit the shunts. We also have the option as ive written previously of putting the TP shunt back in the Pleural space sometime post-CV surgery.

Stay tuned,
Thanks for stopping by,