Thursday, December 27, 2012

(#20) 4th surgery, 2nd shunt

I apologize to those fellow followers
for not updating on yesterday's (12/26) surgery to replace the 2nd shunt. I was pretty worn out Weds night (ended up being an early 9:30 or so surgery w/ maybe a 15min notice that we where next-even Dr.Bragg didn't know when the surgery would fall till literally the moment she was headed up to talk to me in N-ICU anyways and so I had went to bed late the night before.
Anyways I spilled water on my laptop today and didn't bring my netbook so will update once that dries out (hopefully since my brother just fixed it a month ago!) or otherwise as soon as I can.
The short of it is that this surgery went well, another Anesthesiologist I've had before w the fiberoptics/special airway equipment. The surgery itself was another tough one and many addt'l incisions (4 I think might be 5 as although all are covered some dressings are covered by my hair) but Dr.Bragg had to use a guidance system (think of GPS for the brain w using a pre-loaded CT scan from the day before) due to ventricles and how hard getting this shunt in was. The toughness of my skin/muscle makes the placement so much tougher.
She went w a Aesculap (sp?) MiniNav fixed pressure lowest setting (0) valve as the valve is one that should drain even while I lay down (a big problem for me) and as close to the negative draining pressures I did so well w on the External drain but w/out having to not place a valve altogether which can be a bad thing if you get an infection. My other shunt though a different type/brand is also a low pressure valve.
I'll try to update anything else soon but have to add a cute side note. Dr.Bragg had bought this super cute reindeer balloon on Christmas and it was losing air so today while I was down in X-ray she had taken the balloon and had it refilled + was bringing it back as I came back from Radiology. So sweet. :)
Will try updating soon,

Tuesday, December 25, 2012

Didnt take long.. Back in the Hospital (Xmas Eve morn)

3 or so weeks ago when I was admitted for that first (of now will be 4 in 4 weeks) surgery and a day after I found out I had a shunt infection  so it would be a much more drawn out course and the nurses said "Ooh so you'll be here for Christmas?" I really thought "no way, isnt happening, i'll be busted out of here by then"... What  with having to do a week of IV antibiotics, remove all the shunt parts, another week of IV Anti-b's alongside the External Drain and then replace one of the shunts plus plan to finish the IV meds at home after 5 more days in the hospital I DID make it out and we planned to  replace the 2nd shunt in 2nd week of Jan. That whole making it out part lasted a whole few hours, maybe 1 or 2 till I started to feel sick and then progressivelly more and more sick as the few hours I was out wore on....
Sadly I am back at UW Hospital again; this time less than 24 hrs after I left.

I got discharged around I think 3:30-4:30 I  once we got done in Pharmacy and then I had wanted to stop at Target in  Sun Prairie on the way home and after we went to my Apt in Juneau where we took in all my hospital stuff and collected my presents for Christmas Eve. By that time my headache was aweful and so we had my nephews Mom just drop him off in BD.

By I guess it was 8 or 9:00 and as soon as we got back to my parents house I went downstairs in their spare room and laid down. (which even propped up made it all the worse and to which I began to throw up first on the floor which I was so shaky and sweaty/cold I couldnt even get up to clean up, thetn when I couldnt fall asleep I got up to the bathroom came back and  threw up some more, over and over and over for about 3 hrs. Not even the 2 different nausea meds I have helped. Finally since I was at my parents for the night I went up and woke my Dad up to take me to the local ER; there they did a head CT (showed the air from when we took out the External drain) and meds while the ER dr called down to UW and spoke directly to my Neurosurgeon (thankfully she was on-call) and within an hour and a half I was transfered via ambulance to UW-Neurosurgery floor where they planned to replace the External drain that day (it was very early Christmas Eve morning maybe 2 or 3:00 when I got to UW). On the floor at UW and off the ambulance they gave more meds and Neuro checks and I finally fell asleep for a few hours. That morning they transfered me to the Neuro-ICU bc of the planned External Drain and closer monitoring. When Dr.Bragg came by she was sweet and brought Christmas Reindeer balloon and Christmas kitty globe .  
                              From Dr.Bragg the first day she came in (Xmas Eve)

She decided against doing the drain bc instead she wanted to put in the 2nd shunt as soon as Christmas day or the day after. Christmas Day she opted for doing it Weds due to a more open schedule and this way my family (or my parents, nephew, sister and 1 of my 3 brothers came and my Mom brought Christmas dinner and dessert)s) (I am not very hungry) but was so nice to have those few hours together as it has been pretty sad missing everything about Christmas basically otherwise. I watched a Lutheran Christmas Eve service last night on TV which made me a little less lonely for Christmas Eve day and night. My parents brought a couple presents today but as a family we are (as long as I am out of the hospital) going to do on sunday with all of my siblings and most of my nieces and nephews.
                    My brother Aaron and our nephew Zander playing on the computer at the hospital
                                            Two Peas in a Pod - Love these two!

Surgery is scheduled for tomorrow they think likely late morning or early afternoon and so far as I know we will be placing a VP shunt but along a new shunt line (new tunneling vs the old shunt tract) and I know Dr.Bragg has talked about placing this one at the back of my head and down the L side if she can do it with my already having the Port there. The soreness from last weeks surgery and the swelling in my lumbar spine surgery from 2 weeks ago's surgery havent yet healed or gone away so I am not entirely excited to inflict even more discomfort. Heaven help me. (God is the only one who has the power to and with him as guide Dr.Bragg will do well. I pray all of this soreness heals soon.
Merry Christmas and although I spent it in the hospital I am still grateful for my life, my family, friends and today especially for a good Neurosurgeon who is amazing.
God Bless,


Sunday, December 23, 2012

#19 (In-pt) Revision, Recovery, Pneumothorax (Going Home!)

So I apologize this update covers from Weds surgery to-date which is today Sunday - the day before Christmas and I AM GOING HOME after 26 days In-patient!!!

Surgery on Weds which was scheduled for 3:00 ended up being delayed about 4 or so hours and we went to the Pre-op and then OR around 7 and 7:30. I think the surgery took till around 10 but cant remember that part to well. Because the surgery was delayed so long and because we had given the solu-cortef-cortisol replacement an hour before the original surgery time they did do a second dose ahead of the actual surgery.

I guess I thought this surgery probably would hurt and wouldnt be all that much of a walk in the park and althoguh it definitely wasnt one of the hardest surgeries it was painful and still very uncomfortable in my thoracic spine where 2 incisions are. I have a feeling I will be wearing clothes for the next few days I can disguise not having to wear a bra and for things like church will be finding the most comfortable bra I can even though the incisions are below and I think above the bra line. The actual shunt tract isnt all that long and only  (I think) goes from one side of my thoracic mid-spine to the other in to pleural space.

I did end up with a pneurmothorax (partially collapsed lung) after surgery Weds so was on 100% oxygen through a face mask up till Sat. which just meant (not to minimize) having shortness of breath and chest pain of which is alot better although there is a bit lingering. Thankfully this healed on its own (daily xrays) otherwise the treatment is a chest tube to release the air. OUCH!
There is still a pleural effusion which is likely (I tihnk) just from the CSF draining in the area around the lungs and should just absorb if it works as the shunt is intended to.
Dr.Bragg made the comment how tough the muscle was to get through in tunneling the shunt catheter and that is part of the soreness I think. I think the 'toughness' has to do with the storage from the MPS (like continually adding garbage to a garbage can but never emptying it so it's harder to get to the actual target/whatever you want to find). Hopefully this back soreness will heal in short order!
For Pain Mngmt we rotated a cocktail of morphine and dilaudid IV and oral which worked pretty well and at this point the thing that hurts the worst is the 2 incisions in my upper back. As far as the lumbar swelling from surgery a week before Dr.Bragg and her team drained some of that spinal fluid which helped alot with that discomfort  although there is still a fair amount of swelling that has reaccumulated.  Most of the stitches are dissolvable minus a couple incisions from the week before.
Dressing I made up out of a stocking  hat to cover Ventriculostomy (drain).

The shunt type is a Thoracic to R Pleural shunt by P.S Medical and low pressure valve.
Within a day of this surgery we ended up opening the external drain back up and have been draining a very fair amount of CSF from this as well so we've decided to just go ahead and place a second shunt again and Dr.Bragg is tentatively plannig on this for the 2nd week of Jan. The plan is to place the 2nd shunt likely in the  back of the head tunneled down L side (despiter Port) and then tunnel back across chest down to stomach.
She doesnt actually have clinic time that week or normal surgeries scheduled but has a few cases on bc she is finishing up some case studies she has to put together for her final boards (certification). She said she would like to try and do my shunt that week and will have her Secretary call me Weds. see how I am doing and get this sorted.

                  Santa has a Ventriculostomy too..
                Couldnt decorate cookies at home so why not do them in the patient room?!

Chartwell a Pharmacy company and Home Health United my Insurance HH company have coordinated the Daptomycin injection and will come out starting Chrisrmas Eve and then for a few days to train me how to do this over a couple minute flush. I will either do this up till Fri or at my Infectious Disease fup Appt the doc will tell me if from their testing do I need to cont the med for another period of time or not.

Otherwise its just been an exciting (note sarcasm) few weeks of soem VERY annoying, slightly (again insert sarcasm) nurses (not all!) who dont know my case but
 who have 'hovered and who put a deaf ear to things you have to say that your own TREATING DOCTOR okay'd. In this case the drain being open for short periods when I stand up and my ICPs being more tolerable when they are in the negative.  I dont get why a nurse wouldnt look at A. how long a patient has been in the hospital and B. verify what they are saying is really what the dr also said was ok + stop badgering the patient that they are wrong constantly, With one nurse I told him to knock it off more than once and finally yesterday (Sat) my day nurse told the night nurse to chill out, that I knew what I was doing/saying and that in fact my Neurosurgeon HAD ok'd leaving the drain open when I stood up amongst other things!

Hallelujah to finally getting out of  here and to it being Christmas Eve tomorrow and I  AM GOING TO BE HOME!

Thank God for the graces he gives, the compassion has has and for the reminders he sends that despite trials he will always lead the way.
In Him All things are good and gracious!

                       Twin brother (Aaron) and I
               Sis (Sara) and Zander (nephew)
                  Dad sleeping away (while Mom and I played scrabble one of many nights)

Wednesday, December 19, 2012

#19 (CSF infection) shunt replacement...

9:30 - Dr.Bragg just came by; see below for the rest of updates but she'd like to leave the External drain in place for a few days but clamped and this way if I am either unable to handle th new shunt set-up or need back up support we can un-clamp it and have it to also drain while we figure things out. Hopefully we wont need it!
As far as home??? I am unsure right now but reallly hoping Sunday at the latest...
12/19 - 8:30

Dr.Bragg came by yesterday while the Access Team Nurse was re-accessing my Port (supposed to be changed every 6-7 days) and so we talked  but I was a little flustered by the 2 other nurses in here and thought process wasnt exactly up to speed. I did get some info though and she was actually planning to make a few more calls last night regarding the type of valve to use (or maybe not even use one) and so she should stop by this morning or at very least right before surgery to update me.

Surgery is scheduled at 3:05 and I am not sure actually if i'll go to the main Neurosurg. floor (hope so) or be coming back to N-ICU after. The plan is to place the shunt in the mid-thoracic spine and if we place a valve it will also sit in my back (YUCK!) which I dislike very strongly and going to ask Dr.Bragg if there is anyway to go elsewhere with that (side for instance like w the LP shunt) as I cant imagine wearing a swimsuit (she is looking at the smallest ones possible with most amount of drainage so as to be less visible) and it seems like that would be really uncomfortable sitting back or laying down?  It also admittedly creeps me out a little that they will be so close to my spine when placing this shunt and I pray so dearly that there is no narrowing or compression or other issues like we've had with lumbar spine that have to be dealt with but I also know the MRIs ahve shown some issues so im not sure... I think Dr.Bragg would only pick an area that she felt reasonably comfortable she wouldnt have to do any addition 'work'.

The distal part of the shunt will go in to the pleura which is the space lining the lungs; I also am a little worried about this although I know it is our best bet due to absorption issues w stomach and the infection as well as cardiac issues that prevent us from using the heart as a drainage point. I have to double check with Dr.Bragg that she doesnt think the restrictive lung disease will affect absorption of the CSF but at the same time we also just dont know and can only try.   .... If we need to we will place a VPL shunt or some kind of ventricle to -? (unknown drainage pt) shunt if the 1 shunt doesnt do enough on its own. Again we dont know.

The only other thing is my lumbar to former side-valve incision/pathway is swollen and pretty uncomfortable yet from last weeks surgery. I dont know why it is swollen yet but Dr.Bragg's NP said it could ither be CSF leaking (less likely) or just swelling from the shunt removal surgery of which I am unsure why it would be tender and swollen yet. Hopefully quickly; it feels alot like the back end days of spinal surgery healing which I guess to some extent the shunt removal was a back surgery,,

Arrangements are being made for the home antibiotics with a Home health company and the Pharmacy for when I get out; hopefully by the weekend?? Unsure and depends on surgery I guess but we'd really like to still be able to do Christmas cookies on sunday. :)
I updated below about the infectious disease docs yesterday and will update as a whole about the surgery and everything else when feeling up to it.

Infectious Disease stopped by this morning and it was both Beth (NP) and Dr.Stryker armed with lab reports/info which is always fascinating to me.

I doubt I will really get this totally accurate but the test they ran that came back today looks at a more in-depth analysis of the bacteria specifically if there is any nucleic acid growth which there was some but isnt clear what the result means. They will monitor labs for growth for about 8 days after the shunt replacement.

Because they dont know what the result means but the actual lab cultures have been negative since we took the shunts out 7 days ago Dr.Stryker one of 2 ID docs on my case said he didnt see why I shouldnt still get the shunt put in tomorrow which is good news for me and will I think also make Dr.Bragg happy. He just said that they may chose to cont IV antibiotics longer than the original 7 post-op days which start with post-op day 1 Thurs. Beth, the NP will coordinate the home IV treatment with me in which I should be able to do it on my own we just will need to get the supplies and med organized. They also said bc of this un-certain result and the slow growing nature of the bacteria that caused the shunt infections and is at the heart of all this they will have me fup with them on day 8 (a week from Fri) and although he didnt know "how long, longer term" was they wanted to take all precautions and so at the post-op day 8 Appt fup they would chose whether or not to do the longer term antibiotics and fup. Considering I can still get the shunt tomorrow it isnt the worst news and we still may be able to only have to do the 7 days post-op treatment which would be nice.

Tuesday, December 18, 2012

CNS Infection update, shunt replacement date/info

We are on the downward slope!
It's hard to believe (but then again not really) what started as a at most likely 4-6 day surgery and post-op stay 2 weeks ago has now been just that 2 weeks and the final (God willing) surgery to replace the shunts we took out last week is scheduled for Weds afternoon.

The CNS/spinal fluid infection is cleared and so far nothing has grown in the cultures so tomorrow it will be 2 weeks on the IV antibiotics (daptomycin) and after Weds surgery only 7 days to go most of which i'll hopefully be out-patient for! (Infectious disease will cont to follow but since it is a pretty easy 5 min flush and I have the Port I can do the daily antibiotic myself and then just will have to hep-lock the Port each day.  Im not sure how exactly the supply side of it works.

As far as the shunt replacement Dr.Bragg is still debating if she wants to put in a VPL (ventriculo-pleural) shunt but in a different ventricle and could it be done on the opposite side (Port is on L side while VP shunt was on R) as she wants to avoid using the same shunt tract as before or will she do the thoracic pleural which is basically the same as lumbar peritoneal from what they've told me with the proximal (tip I guess)  in the mid-spine and valve on the side and then tunneled a short distance to pleura which is the space around lungs.

Otherwise the ventriculostomy (external drain in ventricle) is doing ok once I figured out if I was getting or had a headache and vision blurriness and the drain didnt seem to be emptying enough I could just leave it un-clamped and stand up + dump some CSF (for whatever reason makes me feel better but in most people would cause extreme low pressure headaches) and usually every hour or so it makes a big difference. I told Dr.Bragg about this a few days ago and she actually was pretty ok with it and just asked me to watch and see how much 'dumping of CSF' it took for the symptoms to go away as that might help her decide on a better valve or which shunt. This fluid dumping is also on top of the EVD being set to drain automatically at -5 which most people probably do better around fluid draining at 5-10cm.  We are just putting back in the one shunt and that is as I think I may have posted previously what makes me a little nervous; I hope just one shunt works and we can get away with this + doesnt constantly occlude and symptoms are well controlled! It is definitely worth a shot and just hope one alone works. :)

If not before will update sometime after Weds surgery.
Thanks for stopping by,


Thursday, December 13, 2012

#18 Shunt removal, Infection update

I apologize ahead of time if there are a lot of errors in this post as my vision is super blurry and having a very hard time seeing what I am typing.

We went back to the OR about 1:40 yesterday and I was awake as is my preference while all the monitors, machines, etc where hooked up and then surgery itself took I think till 4:30 though it originally was thought to be about 1 1/2 hrs. I woke up in post-op to Residents and then Dr.Bragg to trying to get the EVD (ventriculostomy) catheter to work and re-doing the tubing on that as well as the head wrap. 

The surgery itself had just  a few minor glitches with Dr.Bragg running in to ALOT of scar tissue in my belly (she always comments how amazed she is at how fast my body re-builds/produces scar tissue but I imagine part of that is the storage material to) that she had to I guess take out or work around to remove the shunt catheters where-as she said in most shunt removal surgeries they can feel the shunt tubing and when they open up the patient they can visualize it right away to. She said they ended up using X-ray imaging to visualize where the catheters where before they could finally get them out. With the mindfind (aka my back) Dr.Bragg again had some troubles apparently because of scar tissue (despite that last surgery only being in late April/May) and I definitely could feel how much more removal she had to do in that area as it felt just like w the 2 lumbar laminectomy surgeries she has done to get shunt catheters in I guess maybe she had to go through muscle or something to get to the catheter and as well it has to be withdrawn from my upper thoracic spine down and out of lumbar incision which likely I would imagine causes some irritation to.
Thankfully my stomach, side (where the valve and reservoir where anchored) and collarbone incisions really dont hurt or uncomfortable bc my back and head more than make up for those other 3 incisions. With my head incision to remove that catheter I guess when they where pulling the tubing out from the ventricle it must have hit a blood vessel and that bled apparently something like crazy but the only way they could stop it was to apply alot of pressure externally which resulted in one massive aching pain in the R side of my head coupled w a almost burning like sensation inside caused they said likely from the pressure that had to be applied and resulting bruising and swelling. My R sided vision is super blurry, sometimes kind of double likely from teh swelling making reading and focusing kind of hard. We initially had the ventric drain set at 5 so I was also having on and off pretty bad pressure headaches and I thought the vision was solely from the blood vessel but then when Dr.Bragg's NP stopped by earlier today I asked if we could drop the drain down to '0' and that helps vision a little. This ventrics/EVDs definitely dont seem like they do a great job of simulating an actual shot and after feeling mostly good for the past 4-5 or so days  (I actually think the shunts where starting to work better as I could once again hear the VP shunt everytime it would drain as it causes a faint buzzing noise) and I had more energy whereas now even though I know surgery is still taking its toll I just feel really tired and headachy and some nausea. Boo! I hope this improves cause I so dont want to spend the next week feeling this yucky again. Hopefully this will improve.

Dr.Bragg and Infectious Disease where here this morning together (as was my Mom so she could hear what was being talked about so I am glad it was good timing). As mentioned above they are continuing the IV antibiotics for the next week and if need be will add a second one either directly in to the EVD catheter to my CSF or just as with the Daptomycin done as a regular once daily IV med.  The other Infectious Disease doc who has been on my case also stopped by today and told me he thinks the earliest surgery will be is Weds as they will get back some in-depth bacteria analysis test on Tues along with the daily CSF cultures and that will tell them if they are fine to do surgery Weds or is it better to give it a little more time and do it Fri. Clearly Weds would be better as I desperatly want out of here before Xmas Eve and ideally before sunday morning so I could go to my sunday school class holiday party with my co-teacher. :) Whatever is God's plan though will be, easy to accept or not. I would imagine if we do place the distal end of the shunt near the lung that we will have to watch it for an extrs day or two as Dr.Bragg has said previously she doesnt know if this area will absorb CSF well enough or with my overall absorption issues there be problems. Lets hope not.

On top of all this yuck I itch, I itch so bad I cant even tell you; as soon as I scratch one spot I have another and another and another. I am sure it is from all the bandages and dressings as I dont do well with tapes and dressings and get red and itchy + also have all this surgery garbage in my hair and covered by a ridiculously stupid and over-done turban type bandage all around my head. I am the type of person who can barely stand wearing 2 shirts much less stuff directly touching my skin and feel alot like I have fleas on me. Is seriously going to drive me up the wall batty.

Last night was god aweful hard emotionally I just wanted (and still want badly) to be home with my cats who I miss terribly and I want to be back to the comforts of my apt and bed and clothes and doing things right away vs having to wait for someone else for every little thing. I slept ok with Ativan by IV and decent pain cocktail control and this morning my Mom came to spend the day plus by noon I went back to bed and slept for a few more hrs while my Mom read and just stayed by. I am hoping so badly tomorrow is still a better less mentally and physically exhausting day.

I will try to update again soon,


Wednesday, December 12, 2012

Surgery, Nurses, gifts

Surgery will be in the afternoon tomorrow (today Weds) though I wont know an exact time until the Residents round. Dr.Bragg plans to take out the drain and VP shunt as well as the LP shunt and then place the external ventricular drain (EVD). We will leave this all in till next week Tues or Weds or the infection is gone atleast 72 hours after an initial clear CSF culture. So likely next week.

Below is cards my sunday school kids made this past weekend and which my Co-teacher brought today when she came to visit for several hours. Joan and I went to the cafeteria and I will completely miss the ability to wander around the hospital over the next week! I think in the morning I am going to venture over to the Children's giftshop for one last stroll - I just take the IV pole with CSf drain and IV fluid, etc with me.

  This is a gift of ornaments my one nurse April brought me today as she was headed to a meeting. I have a small tree in my room and a light up Santa and she didnt want my tree to go without ornaments (I just had a couple on it). Love these nurses! :)

Will update after the surgery or in next couple days,


Monday, December 10, 2012

Shunt removal (surgery) set, Infect Dis plan. Plain Crazy

I havent talked to Dr.Bragg yet today but this morning a couple of the Residents had to come and re-change the connector/connection between the VP shunt catheter (smaller than a straw and closer to size of a coffee stir straw) and the IV catheter as I accidentaly ran over the line with the IV pole  and disconnected the 2 parts this morning.(the whole drain hangs from level of IV pump and down to just below the wheels of the pole and then runs up to the shunt catheter which is externalized at the abdomen level)  Anyways the Residents had to come change the IV line, catheters, drain and dressings + re-hook everything up and tie the pieces back to my stomach.  The one Resident is who finally told me he had been working on scheduling surgery for Weds and would be after noon as they have a clinic in the morning.

When I talked to Infectious Disease over the weekend they where saying expect 7 days minimum and possibly 10-11 days with the External drain to make sure they got clear CSF cultures and got the infection cleared up after removing the shunts and hardware. My actual ID doc today said she wasnt opposed to the 72 hrs Dr.Bragg was shooting for as long as the cultures came back negative and she would work out a more final plan with Dr.Bragg.    The Resident said they are planning for surgery this Weds and then replace everything next Tues or Weds and should still be able to get out in time for Xmas as long as all goes well although no guarantees which is what they've all said.  I am curious why Dr.Bragg apparently changed her mind on the length of the EVD (external drain) and antibiotics before putting everything back.

The Resident did say when I asked why we had to do a week of pre-surgery IV antibiotics that it is better when they can do that as it helps 'prep' the body (I think that was it) and then they have a start once they get the hardware out.

****** Dr.Bragg just stopped by in the middle of typing this and she also talked to ID docs and what they want is 7 days total of infection free antibiotics but as far as putting the shunts back in once we get a clear (no infection result) then the "clock" starts ticking for the 72 hrs of testing ID wants (so say we put the shunts in Weds and on Thurs get a CSF result that is negative then they test for 3 consecutive days to make sure the CSF stays negative before they will 'ok' putting the shunts back in..).  I also asked Dr.Bragg if she thought she would put the shunts back in the same spot or elsewhere and she said she has been thinking about this and isnt sure yet what she will do but wants to think about it some more since we do have time. She mentioned she is considering could she put the VP shunt in but on the L side but then she was thinking about the Port being there and so she wasnt sure what she would do with this yet I know she also mentioned maybe moving the tip to the ventricle at the back of my head. For the LP shunt she had thought she would place it higher (above lumbar spine) but I am unsure there to would she route it around the same side and in to peritoneum or can it be tunneled distally to another drainage point? I dont know but going to try to remember to ask tomorrow.

Hopefully the cultures will be clear in time to replace both shunts next week Tues or Weds as planned and hopefully that surgery wont be to hard (no un-expected spine surgeries for instance) and hopefully with God's grace I will not go to stir crazy (plain crazy!?) during the next week in the Neuro-ICU.

On a different but related note my Insurance Case Manager and the Neurosurgery fl Pharmacist have been co-ordinating getting my weekly ERT drug shipped to the hospital (vs my infusion clinic in another city) and looks as if that will get here tmrw. For the time being they just have 2 wks coming and if needed the Pharmacist will order a 3rd wk but God willing we wont need that!
Stayed tuned, thanks for stopping by and will update again soon.


Friday, December 7, 2012

Infectious Disease, shunt removals, replacements

The Infectious Disease doc stopped by and turns out was same one as on my case last year; she told me they have a pool of pts they get assigned from and she recognized my name and said she wanted to take me. :) I guess if nothing else it's nice that  providers like this who have had me in the past want to have me on their case later on too.

She asked what recommendations Dr.Bragg has suggested and we talked about some of the things where Dr.Bragg suggested and was thinking. She (Bethany, Infect Dis) commented that she had been hoping the neurosurgeons would opt to take out all the hardware and then do an additional 7 days of IV antibiotics (on top of the week-ish that will already have been given) and after 7 days if the Spinal fluid is clear they can replace the shunts but if the infection still surfaces she would recommend they cont another 72 hrs of IV anti-b's, re-testing at the end of each of these 72 hrs and once the infection was gone they could go ahead with surgery. She also said they can do a small amount of the antibiotic directly in to the EVD to help fight the infection. Hopefully the CSF infection will be gone at the end of the 7 days I cant imagine another 3 or more days (testing CSF every 72 hrs once past the 7 day period if not gone). Ugh. Somone. May. Seriously. Need. To. Admit. Me. To. The. Psych. Ward. =/ Sorry to be whiny just need to for a short bit and vent a little although just venting at the situation not about anyone. With the EVD (external ventricular drain aka a catheter that goes directly in to the ventricle in the brain and acts like an externalized shunt to drain to a CSF bag that hangs from an IV bag (similar to this lumbar drain) and has to be 'zeroed' ANY time I move from sitting up, to laying down to standing, walking, etc. So as you can imagine you are virtually stuck in bed other than when a nurse is with you to help. Ugh, yuck!

She did say as did Dr.Bragg that this is a slow growing bug and typically pretty mild but because I had it last year and we did oral antibiotics then for 6 weeks before + exchanged the old shunts for the 1 new shunt in the same surgery and then did oral antibiotics for 7 days after (the spinal fluid was clear of infection at the time both after surgery and after the 7 days of addt'l post-surgery oral antibiotic) that she thinks it will be more aggressive this time and it worries her to have the infection sitting in there in the shunts and CNS now. She also said after asking me about all the symptoms ive had over the past months+ and a bunch of other questions that likely all the somewhat unusual symptoms ive had (and Dr.Bragg also said the same) including the stomach spasms, upper-mid back pain and symptoms with bending my neck (including a different kind of headache and pain) as well as being so tired so much of the time and fever/night sweats here and there are all related to the type of infection and the amount in the CNS. Thankfully bc it is a CNS bug my plates and screws in my neck and Port in my chest are all fine and dont have to be replaced.

The big thing on all our minds is Christmas, can we get this all done and feeling better and home by Christmas? Dr.Bragg keeps talking about it and seems upset she cant guarantee it, the ID dr seems to think we should be able to barring any complications and the nurses seem skeptical. =/ Dr.Bragg and the nurses know best what my last few surgeries have been like and we have numerous things to do in the 2 upcoming surgeries so I just hope so. I am sad to be missing our holiday traditions my Mom, sister and now sister-in-law have done for yrs (baking and decorating cookies, shopping), and some other things. I am really trying not to think of the few weeks out picture but it just being the holidays is a little depressing admittedly. I do have the very vast majority of my Christmas shopping done which is good and a few gifts beig sent to my house but only a couple Xmas cards where mailed and the rest are sitting in the box to be written out yet. Can I just say it again!? Argh!!

I am unsure when the first surgery will be to remove the VP and LP shunts and external drain (part of the VP shunt) but think Dr.Bragg was looking at her schedule for early next week and the I.D doc preferred it be done as soon as possible.
Stay tuned, thanks for stopping by,


Thursday, December 6, 2012

CSF bacteria, Infection,

The Resident came in very early this morning (1-2am) to let me know the 2nd CSF culture was also positive and they where oig to start IV antibiotics as well as talk to teh Infe4ctious Disease drs and get a consult from them what they suggest. The culutre will have to grow to see what the bacteria strain is so they know how best to treat it which can sometimes take a few days, I am unsure. Once Dr.Bragg stops by I should know more; she is in clinic this afternoon so I am unsure if she will stop by this morning.   ....

**Later Thurs night, Dr.Bragg stopped by late this afternoon and talked about the whole situation. She first found out about the infection around Midnight Weds night/Thurs morning when the Resident called her with the results. She asked Infectious Disease to consult on my case but ive not yet seen them, I am thinking they have talked to her though as one dose of IV antibiotics has been run already. (daptomycin). Dr.Bragg's tentative plan (she wanted to think over it more tonight) was that we would do IV antibiotics for the next days and she would look at her surgery schedule + perhaps already on Monday she would book an OR to take out both shunts (LP and VP) as well as disconnect the ventricular-distal drain (which is part of the VP shunt) and place a EVD which we would drain from in place of the shunts for probably close to a week or so (maybe even as soon as the end of the week) in between which we would cont the IV antibiotics and then she wasnt sure if she would replace both shunts at once (I think I got this part right) or if she would do one at a time in separate surgeries - I need to ask her that again as I cant remember for sure. She does not plan on placing either shunt in the exact locations and said she would likely place the VP shunt in to a different ventricle although I am unsure would she thread it down the same side (I imagine so as I have the Port on the other side) and then she said she would very likely place the LP shunt up above the previous scar which goes from L1 or 2 down. I think she said she would create a new incision up above where we've done all of the previous lumbar surgeries and I am unsure if she would still re-thread the catheter up to the upper thoracic spine levels. After this we would wait and watch and heal while doing whatever amount of antibiotic Infectious Disease recommends.  The infection itself is a slow growing one but we know is not from this last surgery on Monday as there showed moderate amounts of the bug in the tested cerebral spinal fluid (CSF).

I'll update when I know more - please pray I dont go stir crazy and that this all goes well and that Dr.Bragg in her often infinite wisdom is able to make a fit and working plan and that her patience continues as with her I feel better about this all although honestly id rather not be dealing with it.
Thanks for stopping by,
Leave a message if you like or sign on as a follower,


Day 1 Day 2 Post-OP

Dec 4th - 5th,\
Yesterday was long and relatively crappy feeling with endless episodes of vomiting alongside fever, chills, inability to sleep despite having been given multiple different meds to help from benadryl, lorazepam and seveal oher meds in those classes. Most of the things I would try to eat and the meds I took orally I endeed yp throwing  up countless times a 1/2 a dozen time and probably many more times having started in the morning and going well in to last night although less so.

Dr.Bragg came by in the afternoon and due to my symptoms opted to clamp the CSF drain for an hour and then turned the level of CSF up that would drain from being 'Zero'ed' (in which we where making aroud 90cc of CSF in a 6 hour period which Dr.Bragg said is a huge amout of fluid to drain (especially given I do have the functioning LP shunt).  She now has the drain set at 10 and we may still decrease that amount on the CSF drain to drain more CSF,  We have some figuring out to do. to get the symptoms under control and make the best decision for fixing the shunt. Dr.Bragg talked about some ideas and really stressed that even thought it will take time likely we arent out of options and she does believe she can help.

Dr.Bragg and the Residents took a CSF sample and ran that due to the fevers I was having alongside all the vomiting and this result came back with some funky bug. The opted to run a second sample so once I hear from the Resident or Dr,Bragg on the CSF results from this 2nd test I will update that here as an addendum.  Originally the Resident was going to have me on food restriction due to the original CSF result but they opted to do the 2nd CSF draw and culture. I am unsure when nthose cultures will come bclk but will update,
I hope today goes well. .

I like information, I like information a lot (as most who visit here have probably figured out), if that makes me "anxious" or "controlling" so be it I wont and wouldnt apologize for this trait as I think it is one every patient and parent should have and I think it can only help a patient get better care and make better care decisions. I would never apologize for the way I feel; sure I would and have apologized here or there for sometimes asking questions after the fact and for changing my mind and for not being certain of what I feel but those traits to I think are ok to have as I think it makes our (good, anyways) doctors realize we to are people and not just patients. People with lives outside of being patients and who atleast in my case sometimes very much over-think what I am trying to figure out and over-think what I am considering but in the end I think all of these things have helped make me a better, more educated and better understanding patient but not consumed by what I have and instead what I have is just a part (albeir often a big part) of my life.

Thanks for stopping by,


Tues Dec 4th
It is mid-night on day 2 post-op although it wont have been 48 hrs until mid-Weds afternoon.   I slept maybe an hour the first night (monday) and tonight have slept on and off a couple hrs here and there for maybe 4 total so far? The days have been pretty darn good headache wise but nights are our battle and tonight is no exception the Headache is immense and un-pleasant so I figured I would just stay up for awhile and do this or something else.

Earlier today the head nurse who was my nurse for the better part of the day (7-3) said to me that he wasnt sure who my night nurse was going to be as the nurse who wanted me and had gotten me for the last 3/4's of the night before ended up being sick but he told me I have no doubt any number of the nurses will be vying for you because everyone asks for and wants you on their patient team/load! How sweet is that, really? I've said it before though the nurses on this floor are pretty great and they all work well together and will go out of their way to help, the one brings in all kinds of food "for midnight snacks" to chose from (love that!) and the others genuinely just seem to care and not that I want to be here or they want me to be here but if I am then they want to be there to help and make it as good as possible.  Ive had a resident stop by a few times today; from things he's talked about he seems kind of troubled but nice and also just seems like the type of person with no family and lonely. The nurses kept walking the halls checking to make sure everything was ok (he was just standing in the doorway) and then finally one came and took him to his room and said to me "I am sorry if he bothers you again just call us", I didnt really mind though sometimes someone just needs another person who they feel like is in similar straits to listen and so I can offer that one small thing. :)

Dr.Bragg yesterday (tues) morning wanted to let the drain flow at its current level (zeroed) for another 12-24 hrs - I was asleep taking a nap when her NP stopped by again late yesterday afternoon to check in (Emily was with Dr.Bragg in the morning) and so this morning Dr.Bragg will make adjustments. One thing she said was she might lower the amount the drain level so more CSF drains as we are trying to figure out this nightime and morning stuff.

Monday, December 3, 2012

Revision #17 VP shunt externalize surgery

The other day I made the comment on fb "throw up and go" with an additional comment basically making light of being sick that morning and heading out the door after the thought behind it being to just be silly really when I was feeling pretty bad and I guess make soem of my friends laugh who would get it and some did; with one of my friends commenting was I "opening up a new fast food chain with a drive through" - my thought? Could it bve worse than something like McDonald's really? Gross I know. My point behind it really just that despite feeling lousy I didnt want to let life pass me by and I wanted to keep teh plans I had with my Mom, sister, and nephew and after my head and stomach mostly settled it was a really fun day! :)

I am here in-patient tonight at UW and the surgery to place the VP shunt distal end (in stomach)  externally was done earlier this afternoon in a relatively short 30min surgery. Anesthesia was a doc ive had before and went well and as well he agreed with my endocrine drs orders for the solu-cortef injection (for cortisol replacement) usually especially with the shorter surgeries the anesthesia docs give me a hard time they dont need to do the replacement dosing and even with my Endocrine drs order they dont seem to get that it IS needed. Non-the-less it was nice that this time it was given as ordered an hour ahead of time and no stress about that. :) The externalized shunt is draining free flow nad has to be set around belly button level but so far hasnt drained much although w the functioning LP shunt I dont actually think we have a set amount to want to drain and we will play around with various settings and adjustments to how it drains.
Dr.Bragg told my Dad the shunt was draining well when they externalized it and when she pulled it out she thought maybe it had been sitting yp against something again as happened in the past due to some resistance as she removed it I think. I will be curious to talk to her more in the morning.
She  also said in pre-op she was going to take the opportunity and try several different drainage methods to try and get the best results and listed a few things we may end up doing from placing a different valve, taking out the valve and placing the distal end in pleura as she still feels it may be I am not draining enough bc my body isnt able to absorb the CSF from both shunts draining in to my peritoneum. She talked about one or two other ideas if this doesnt work but those werent things she was eager to try and had more to do with the underlying small/non-expandable ventricles and she nor I are eager to go that route. I asked how long this all might go over as we will have to do another surgery to place teh catheter back in to whayever location we chose and although I dont think we will do it if she deciedd to remove or change the valve that to would have to be done at the same surgery. She really wasnt sure how long I would be in-pt. I guess maybe I will know more atleast by mid-week or maybe even a better idea in the morning? I dont know if  I will get out in time for sunday school kids singing on sunday (the song is 'Awesome God'). I hope so. :)  Joan (fellow co-teacher) and I where texting tonight and she asked if I minded a visitor so i think she will likely come sometime this week which is nice I really like her upbeat personality and she is funny!

I hope this just works and we get what we need and are able to figure out a good plan. I like Dr.Bragg but hope to stay out of her hair!

Will try to update tomorrow,


Tuesday, November 27, 2012

Pre-Op Physical, Hand and Neuro/shunt, Thanksgiving

Tues Nov 20th?
Today, I saw my PCP for the pre-op physical for Dr.Bragg's shunt surger(ies) and for the Hand surgery and kind of had to laugh; I knew from the start (and was ok with) that my new PCP knew pretty much nothing about MPS before she had met me but she did some research/homework before our first mtng and atleast knew what the big issues where going to be. (her doing that research alone proved she was willing to learn.). Today she commented that this should be the last time I needed to see her for a pre-op appt for the shunt stuff for a long while and we shouldnt ever have to do a hand surgery pre-op again given this surgery (3rd time in 10yrs for R hand) was going to be so extensive. I am unsure if she (probably) just thought I was kidding as I laughed and said something along the lines of "I am sure we'll be doing this again in a few yrs for the hand stuff" the reason being for my saying that of course is carpal tunnel in us MPS pts isnt the same as CTS in non-MPS pts/general population as for us it is caused by GAG accumulation and inflammation and doesnt matter how extensive of a surgery surgeon do it will recur and the surgery is more to preserve nerve function and relieve symptoms. My concern all along with this Hand surgeon has been I dont think he really gets the MPS factor and I think he thinks (it seems like) he can make it go away for good this time by doing the additional things and protecting the nerve with grafted tissue post-release. I am a lot hesitant and more than a little reluctant how this will go. =/ ?

Weds Nov 21?
I saw Pain Mngmt for fup on Thurs and she of any of my providers knows me very well and we where talking about the carpal tunnel and associated surgery in Dec and I made the comment I thought maybe I should get a second opinion from my former Hand surgeon (switched bc of Insur but he did the 2nd releases on each hand and at same time the tendon transfer on my R hand.) She made the comment in all these years she has known me now (5 or 6) and through all the surgeries she has seen me through (more than 2 dozen in that time) she had never once heard me express concern about if the surgery/surgeon was doing the right thing and she strongly felt I should get a second opinion if even it just means the 2nd surgeon (probably my former) where to say they agreed (or not) with the plan currently set to be done mid-Dec. which is more extensive...   I gave her copies of the c-spine MRI and she made the comment my headaches could be caused by the severe narrowing at multiple levels below my previous fusion  since the headaches (different than the shunt headaches) are much worse anytime I bend my neck..  I did talk to my Ortho-spine surgeon in Mn's nurse and sent up my MRIs and Flex/Extension Xrays from the past year and recent as well as surgery notes to them and should hear back in the next week or two what they think.

Family pics from Thanksgiving ... Thanks, Jenn! (sis-in-law)

Nov 26th - Happy Birthday Lis! (my niece)
My Insur Case Manager called late this afternoon and was a nice call; while we dont always agree on everything we talked about the Hand surgery ( I had emailed her about what my PM dr and I where talking about) and our thanksgivings and I generally feel a bit more settled when I can just hear other people's opinin of what I am thinking about/wondering about and in some cases worrying about. I have gotten a little better at asking for advice although I still if I dont feel comfortable with what someone else might think will stick to my feelings and sort through things on my ownmore often than not,  I still dont quite kmow what to feel about this hand surgery but the surgeon himself seems to come recommended albeit my concern as ive stated before I think is what does (or more likely does he not) know about MPS and how that affects CTS and the other procedures he is doing and although I actually in reality dont mind if someone else does the follow up it does still make me wonder howi nvested is a surgeon in his pt if he isnt interested enough in doing his own fup t at some point?
 Monday is the surgery with Dr.Bragg to externalize a portion of the 1 shunt and let it drain outside the body for a few days to see if under-drainage is part of our problem and then if so/if this works well we will go back in and re-internalize the shhunt in to the pleura (chest) I guess.  I will be happy when it is over. I dont actually know how many days we will drain over but wouldnt think more than a couple days and then re-internalize it but should call and ask about that I guess. I really want to get the night and mornings with these shunts figured out as I think we are so close but I am just not enthused about this (not that I am about any surgery but this one especially I think) but I guess it's the price yah pay and I do think we are doing the right thing as the 2nd shunt has helped but just not like w the external drains and that is what we want to understand or figure out what is different.
Since I have ERT on Fri and surgery is next Monday one of my infusion nurses who is also on the access/Interventional Radiology team at CHW agreed to re-access my Port on Fri so I will just have it in for a few days on not a entire week but also wont have to have Anesthesia deal with accessing it. Much better to have nurses do it ahead of time then have Anesthesia try to convine me they can just do a peripheral IV or wait for access team at UW.
My Sunday school kids sing the following sunday (9th i believe) and would like to be there. :) I have class this sun (The birth of John foretold) and then the 23rd which is a Xmas Party for each of our classrooms so should be a fun time with the kids and probably figure out a activity and a craft to do during the hour that day.
I actually am atleast 3/4's done with Xmas shopping and the hardest 2 (My Parents!) are done - I just have part of my sisters, my nephew Quinn, part of my niece Alissa's (b-day and Xmas) and part of my other nephew Jordan's + cat toys left! I am waiting for 2 things I ordered on ebay for my nephew Zander 1 of which my parents and I split the cost on which is nice so then being he is my Godchild I could get him something else to. :) Ive had alot of fun w Xma shopping this year and ebay has definitely helped to!
I want to add that although I didnt write anything for Thanksgiving (this has been a week-long post in progress) I am very grateful for my family, for my nephews and nieces and especially my sister for letting me have Zan whenever I want basically and as well to the family I work for (I love this job) and those people in the past year who have helped me in various ways. I really appreciate all that people do and as well for those who believe in me and want me to work for or help them. :)
Thanks for stopping by,

Wednesday, November 14, 2012


Neuro-Endocrine Appt was ok, she is continuing to keep fups for now at 3month intervals due to the shunt issues (we go back and forth between 3 and 6 mo fups and testing) and the lack of periods as she wants to follow that and see if it resolves. I assume it is just from the stress on the body of up and down pressure and the effect this has on my Endocrine system on almost all levels, who knows. She ordered the usual array of cortisol, thyroid, female hormone and blood chemistry testing.

I went to check an appt date in Jan as this week ive literally spent no less than 6 hrs and probably more scheduling and rescheduling numerous appts for Dec due to the shunt surger(ies) and in-pt starting Dec 3rd. Appts rescheduled have varied from Rheumatology, hand surgery and those 2 post-op fups, Urology and testing to go with that, Neurology-botox and Cardiology of which I am waiting to hear back from a couple yet (from monday, ugh). Anyways so Tues I originally had a pre-op scheduled for the Nov 29th hand surgery but we where going to use this date for Dr.Bragg's surgery anyways AND the date would have still been within the 30day requirement for the Dec 20th Hand surgery, Lo and behold some person WITHOUT asking me if I still needed that appt EVEN THOUGH I TOLD THE HAND DEPT I WAS RESCHEDULING DUE TO ANOTHER SURGERY cancelled and rescheduled the pre-op to later in Dec. I called scheduling for my PCP to try and figure out what to do but PCPs schedule is now booked and the scheduler had me leave a msg for her nurse about what happened as maybe they can make some exception for an new pre-op date. When I talked to Anna, Dr.Bragg's secretary mon she had asked me to try and get this done soon and was happy that it was set for next week meaning they''d get the paperwork a few wks ahead of time. I am so fit to be tied with this Hand dept and their ridiculous scheduling and the fact that they just schedule appts w/out verifying if it works for the pt (I literally would not know about appts and changes if I didnt check mychart for other reasons) and the fact that the dr doesnt do ANY of his post-op fup (ALL done by his staff) at any pt after surgery and just the fact that this drs ofc and Dean seem to think pts can drop anything in their lives to be at the Hand centers whim. Afraid not and incredibly pissed as this hasnt been just once w the scheduling crap but multiple times and ive only been seeing them since Oct. I very much dislike this Hand center and prefer my former surgeon.

ARGHHHHH /(Just to vent a little more),
Stay tuned its never dull, =/?


Thursday, November 8, 2012

Scheduling to externalize...

I know I never posted after getting released from the hospital last weekend (sat) but will update now..

I saw Dr,Bragg today and we agreed to proceed w the surgery to externalize a portion of the VP shunt which she will use the same incision we made last week from what she said and I think if I understood correctly will tie off temporarily the distal end of the VP shunt in case this external draining wouldnt work in which case if it didnt work she said she would elect to place the catheter tip back in to the stomach area and although I dont quite get this part (we covered alot of info and I quickly forget my train of thought or dont think of questions commonly till after we've parted,) but she said in that case she would be able to tie the 2 catheters togeheter and pull it through vs having to re-thread the catheter w their tuneller. If the externalization does work we would place the catheter in to the pleural space it seems which is what surrounds the lungs I believe and a pretty easy procedure (I think).  I am not poitive on this but I think we would only be moving the one shunt drainage tip and not both of them although thinking about this now I wish I would have remembered to ask that and will ask her nurse somtime befoe the surgery as I think Lisa would either know or ask Dr.Bragg for me or I could email Dr.Bragg and ask her but likely easier to just as Lisa.

We are trying to work out dates now for this all to occur as she is out of the ofc the week of Thanksgiving (2 wks from now) but also was trying to think of a way she could get this done before then or atleast she externalize and drain the shunt and maybe her partner could do the 2nd surgery to re-install it either in pleural space or if it didnt make a difference back in the stomach. I am not as keen on having her partner do the 2nd procedure just bc I trust and know Dr.Bragg and she knows me so it seems in all likelihood we will probably end up doing this all the week after Thanksgiving. I dislike the idea of feeling this bad the majority of the day for another 2 1/2+ wks but would rather wait to have Dr.Bragg be there. This of course means I would have to re-schedule the hand surgery which is Thurs the 29th which is also not great news as those symptoms are pretty bad but the headaches and resulting issues are worse. Have I said I hate MPS lately?

Next week I do have appts w my Endocrine dr (3mo) and w my Pain Mngmt dr as well as mtng a friend of mine after infusion on mon so probably in all likelihood it would be better to have the shunt surgeries the later part of the month. It would be nice to not need any of the surgeries at all. =/

It seems from what Dr.Bragg was saying today she may be planning for a week altogether for the surgery, draining, and re-install/revision surgery as she was also figuring out even if we did do the surgery next week I would be in-pt over the weekend but could her partner get me out in time for the holiday. I dont want to be in-pt for Thanksgiving. They say timing is everything well I seem to pick the best times of all for just about everything. =/

On a different note my sunday school kids sing in both church services 2 sundays from now and although my co-teacher is the one directing our class and the other classes (I have no music ability what-so-ever organ or directing wise!) id still like to be there so hopefully that will work out too. These are sweet kids and so far has worked out ive not missed any of my sundays for teaching (2 on, 2 off) and hope to keep it that way. :)

I will have to reschedule the Rheumatology Appt in 1 1/2 wks as I have a pre-op (again, such joy) that same day which was originally for the Hand surgery as we couldnt get this last neurosurgery note to cross over (a wk outside the 1 mo timeframe) but it seems it will likely be for the shunt anyways again. I see my Pain Mngmt dr next week and will see what she has to say about seeing Rheumatology anyways since it appears it wont be w the dr she wanted anyways. Guess I am bringing my new PCP in head and feet first as far as how nuts the MPS stuff really is and can be.

One last note my GC and I are setting up an appt w the Geneticist (not his biggest fan) to map out the higher Aldurazyme dose and our 6mo-1yr plan for what we'd like for it to help and how will we measure any potential benefits if it would help. I am unsure when that will be but hoping to start the higher dose soon.

Stay tuned, its never dull although on the medical front I wish it would be!? I am looking fwd to seeing this friend of mine on Monday, although she doesnt have MPS she gets it to an extent and has been dealing w her own chronic issues and right now I could use to vent to someone/talk to someone who understands how frustrating this all does get to be somedays. She is my age and another friend I met when she was doing her school shadowing w one of my providers.

Thanks for stopping by,


Friday, November 2, 2012

Not knowing, complex decisions, Care

Dr.Bragg was in a really long surgery (well in to the night) so I didn't see/talk to her at all today but her NP stopped by this afternoon and we talked for quite a bit about this all similar really to the conversation I had w her other NP yesterday about giving each option a trial period which was something Dr.Bragg talked about on the phone on Mon when she called me (ie if this smaller surgery to remove the 2nd valve didn't work as we hope she'd like to give it a week or two before we did anything else.) and making sure we don't do to many things at once and if something does help not know what it was that helped. Its a good plan to have and I appreciate Dr.Bragg being tentative just need to remind myself one day at a time is better and even though I desperately want to feel better I need to be patient.

I was a little confused talking to Sue about getting out of here as on one hand she said if Dr.Bragg where to decide to do something early next week (seems un-likely) it would be better for me to stay in-patient but then she also said she wasn't sure what Dr.Bragg would want ie my getting out/care and it was probably be better to talk to her when she came around (Sat morning I think) and make sure she thinks the ultrasound was ok (we never heard anything about it from Radiology) and see what her thoughts are ie cont to wait and see or something else.

Admittedly as I've talked about in the past the hardest thing I have always struggled with regarding the medical stuff is simply not knowing a plan or even more so not having a (if even just) tentative timeline for when things might occur. I am the type of person who does well w plans, information and knowledge of when things might happen or what we/my draw are thinking and might consider trying. I think part of that is knowing that the provider(s) care (which I know Dr.Bragg's team does) and even more so being able to arm yourself ahead of time, I suppose to give yourself a distraction and feel like I am doing something (I don't know this one) for my care. Again about the best I can figure to explain my quirks...

I am hoping to be able to talk to Dr.Bragg for a few mind in the morning and see if her thoughts follow along what she was thinking Thursday and if she will let me go home as well regardless if we're waiting and watching (my first guess what she'll chose), trying one of the things previously talked about or?? I always feel more settled when I know a little of her ideas no matter the situation. Thankfully she is patient and seems to like to share her thoughts or possible ideas.

I in all this as usual just desperately want these headaches to GO AWAY! For good! It was a semi-rough day emotionally on top of the physical headache symptoms that very ebb and flow. I try to not focus on the un-knowns to much but today and even yesterday was failing semi-miserably at not having control and not knowing + even the worry am I going to spend the rest of ny life feeling this crummy so much of the time..(obviousmy none of us could answer that anyways as it is ultimately in God's hands). This afternoon my sis happened to call and I vented some to her as well some good friends in the MPS community left sweet messages in text and fb messages trying to cheer me up as they know the roller coaster ups and downs and how hard it is in not having simple answers or easy fixes/solutions.

I am grateful for those friends many whom are parents of MPS kiddos not actual Adults w MPS and for family who cares even though they don't always really get the actual frustration. (There is simply know way one can understand unless you've been in endless decision making, coordinating and day to day-ness of a chronic, complex and very time consuming issues like MPS care.) But my family is still there and tries and for them I am grateful, very grateful!

Thanks for stopping by,


Thursday, November 1, 2012

Revision #16, 2nd Valve removal, Wait and Watch; test(s), Ideas.

Today has been kind of  long day but hopefully tomrrow i'll feel even some better. Pretty much we wait and see if the CSF stabilizes now between the 2 shunts. I was talking to them about (as has  been a past fear too) that I do worry about this being on-going for the rest of my life and not feeling good so much of the time w small parts of the day I feel better. Thankfully Emily, Sue (NPs), Lisa (Nurse) and Dr.Bragg are so easy to talk to  albeit I dislike really talkin to anyone about how I feel. Atleast they care though.

Dr.Bragg's NP told me one of the things they have done over the past few days is talk to her partner Neurosurgeon and he feels as has been a discussion point in the past that this is related to a compliance issue and will take lots of
 "tinkering" to find the right, best set-up for my body and CSF pressures/flow. We know the 2 shunts compliment each other and have helped keep each shunt from malfunctioning or atleast so often its just a matter of why is it no where near as well as the external drains? Who knows. =/ They did

They are going to do an ultrasound (vs a CT scan which I would have to drink contrast and since I havent been able to keep down alot of fluid (on IV fluids yet) and have no appetite (have eaten very little food) so the ultrasound is the simple means to get imaging although will take a bit longer tomorrow than a CT. This will give them a way to non-invasively look at where the distal ends of the 2 shunts are draining in to and make sure there is no CSF that should be absorbing in to the peritoneum that is just sitting or collecting causing issues. If there is no visible fluid collections it doesnt neccessarily mean there is no absorption issue this would just be the 'easy' way a not well absorbing CSF/shunt would present as. There are apparently multiple ways mal-absorption issues could occur w shunts and drainage problems. I cant quite remember that part of the conversation to well. I think Dr.Bragg said there was a chance they would go back in and explore the stomach but I honestly dont remember this part of the conversation well and am sure we will talk more after the ultrasound.  I am unsure when I will get discharged but suppose it depends on being able to keep down enough fluid and food. I am hoping to get out.

If we did decide to do an externalization of the shunt(s) we would likely take the VP shunt and disconnect it similar to w this valve removal surgery and externalize the shunt at the R upper chest area an then drain from there. I am unsure if we would do an open (free flow vs controlled)  drain (from the shunt) or if we would try different regulated pressures to see what amount of fluid worked best.  If Dr.Bragg did end up moving the distal end of the shunt she said she wouldnt put it in the heart due to the significant cardiac issues and instead would likely drain it in to the chest/pleural area I think she mentioned when we talked earlier today. Initially she had considered maybe the atrial part of the heart could be a drainage point but my Cardiologist was against that due to all the cardiac issues  and already having a Port (access device) in place.  She was more than great about that not being an option to consider.

I should know a little more tomorrow.
Thanks for stopping by,


Tuesday, October 23, 2012

Neurosurgeon call / Surgery plan change

I am still trying to figure my new netbook out so just going to post a quick update here.

Dr.Bragg called earlier today as she said she had been thinking a lot about tomorrows surgery and wanted to know what I thought of trying a different, less intensive approach first to the shunts and she explained her thoughts. Last year after we had removed the LP shunt (infection) and replaced the VP shunt we added a 2nd valve to the VP shunt to increase back pressures due to on-going occlusions and catheter issues to in-theory see if that would help keep the very small ventricles ok and catheter open. Later we added the LP shunt back and had 2 functioning shunts again but some issues.

Taking out this 2nd valve on the VP shunt is a simpler surgery and recovery then it would be to externalize an end of the shunt, drain outside the body and later have to put it back in also surgically. She said if this taking out of the 2nd valve doesn't work then in a week or two we will go back to 'Plan A' w externalizing a portion of the shunt and draining outside the body to see if under-drainage and CSF absorption issues where the cause.

I really hope this simpler plan will work. Praying!!  (I know God has a plan even if I don't understand it and lately I sure feel questioning about it all even though I truely do believe.)

My co-sunday school teacher and I where talking last wk ad I had let her know I was having surgery and she was asking ques about it all.(this thankfully falls on the first of by 2 off weeks (Joan and I do 2 on,  2 off so we each don't have to teach every Sunday which is nice). Anyways I got and email from one of my Pastors saying he and Joan where planning to drive to Madison to the hospital Weds to visit which I thought was nice especially since we've only known each other since the beginning of sunday school less than 2 mo ago. :)

I'll try to update after surgery tomorrow. Thanks for stopping by, Erica


10/23 Pre-op Physical
Just a quick note, writing this from library and phone as my laptop harddrive is being fixed and I also have a new netbook ordered.
Saw new PCP for pre-op today and she is talkin to my Hand surgeon to see if we cant use this pre-op physical/form from next weeks neurosurery shunt surgery also for the hand surgery at the end of the month. Usualy physicals have to be within 30days but we are within a week of being a month away from the hand surgery so she asked me if I wanted her to ask the surgeon; YES! She said maybe if nothing else she will be able to just add an addendum tpo this pre-op physical forms in a week or two for the upcoming hand surgery to cover bases. I hope!!

Risk for either surgery is moderate bc of the heart, airway and endocrine issues but she said as long as I dont have any complications w the shunt surgery she saw no reason to have an issue w the hand surgery. If I would have any un-forseen issues such as infection, heart issues/changes, pneumonia then I should just keep her updated and she will look for Dr.Bragg's clinic/surgery notes to and keep an eye out on whats going on vs having to come back in a few short weeks to see her. I am happy for that and glad she'll take the extra time to reach out to drs to try and make things easier given how complicated and tedious all this specialists and provider stuff gets on top of sunday school, GSF work and other things going on. :)  I like her!

Monday, October 15, 2012

Neurosurgery Appt: Externalize shunt, distal revision(s).

Not only will I be having the 3 part hand surgery on Nov 29th (carpal tunnel, tenosynovectomy (fancy word for cleaning the tendonds in the wrist and hand) and fat pad grafting to cover the released nerves in fat to form a protective barrier) but today I saw Dr.Bragg and she feels like we should go ahead w the shunt surgery to externalize 1 or both ends of the 2 shunts (likely just the VP shunt end) and see if having the shunt still open and internalized other than the portion draining outside my body can give us some answers. The biggest question being are the 2 shunts under-draining bc my body isnt absorbing the CSF properly? If this proves to be the case and I get good symptom relief as w the lumbar external drain (pre-2nd shunt placement) and EVD then we will look at where to revise the shunt(s) (again likely just one of the shunts) to w her commenting on several options such as chest, atrial drainage, etc. She said it is still possible we'd have problems w absorption but we are going to try and find the best answer(s) and she may end up doing several different changes this in-patient stay before we land on a final solution. The shunt drainage will likely be the same as w the external drains; draining in to a IV type bag and regulated to a certain amount of fluid per hour.

She is planning to do the distal end externalization under general anesthetic  as she said she didnt want to torture me w/knowing how toughened the skin gets and how much scar tissue builds up very quickly around my shunts in the past. She thought id be able to go to the regular Neurosurg floor vs having to go to the Neuro-ICU bc I still will have the shunt valve implanted as well as the 2nd shunt will still be internalized. Some of the possible revision locations she talked about where pleura, (lining around lungs), chest, and atrial although she is aware of the cardiac issues and my Cardiologist is really against us putting any of the shunt in the heart as I already have the central line there and would increase infection risk alot to Port, shunt and heart (endocarditis) especially given the cardiac issues I already have w multiple valves and severe enlargement of L sided atrial issues. I think she'll be planning this right up till we have to go back in and revise the actual shunt to a location.

Sat's WALK was amazing; I just volunteered in the kids area - there where 3 of us running the kids soccer event (for any kid that participated we gave away soccer balls and had 75 of the balls and by the end still had kids asking if they could have one after we where out. Amazing turn-out! My neurosurgeon was actually the invited guest speaker which I loved that in her short speech talking about shunts and research and causes of Hydro she even mentioned the genetic component of hydrocephalus (hydro as a secondary issue such as my case from the MPS I dx). The room/hall we where in at the Zoo was literaly huge so it was impossible almost to see everything and she wouldnt have known I was there and I had forgotten she was there so I didnt go looking for her to say 'hi'. I mentioned to her today that I was in the kids area and she said to me she wished she would have saw me/known I was there and we talked about the event as a whole for abit. The fact that she would take her time, on her day off, drive that hour+ to the Walk and give a short presentation is amazing and apparently she also attended last year as well! She's pretty amazing. :)

All for now; I see my Pain Mngmt dr on Thurs., back to regular Infusion monday, Pre-op on Tuesday next week and PT every Weds for an hour. It is also back to my 2 weeks on for sunday school.
Thanks for stopping by,


Wednesday, October 10, 2012

Hand Surgeon; Surgery, Neurosurgery

Tuesday I saw the new Hand surgeon and while at first he didnt actually realize I had an underlying diagnosis he told me he has had a few other patients who've had a 3rd carpal tunnel release surgery and so while we both know it isnt going to restore lost muscle and tissue it can help with symptoms; that is good enough for me. I asked him if it bothered him that it would likely re-occur again and he just seemed to look at it like we'll deal with it as it comes which is what I also think, no sense worrying about that now.
He recommended a 3rd release and a tenosynovectomy (cleaning of the tendons in the hand, my fingers are not affected) and additionally he would like to do a fat pad graft in which he will take fat/tissue from the side of my hand (in this case R hand first) and use whatever he can get (as he put it there isnt alot of fat to begin with there as I have so much muscle loss and thin to begin with) and then use this to "pad" the nerve which has now been cleaned and released 2x's already and a 3rd time will leave very little protection/cushion especially given my amount of previous damage (prior to 1st CT releases which where pre- MPS dx.  That is then splinted for 5-6 days and then bandages changed and I think re-wrapped plus stitches removed at 10-14 days + follow up in 2-3 weeks after that. I will wait till that is completely healed to do the other hand. Other than the tendon transfer in my ring finger to thumb (a pulley like system now that goes from wrist to thumb now) which was 2 yrs ago this surgery will be bigger than a typical CT release but he said still only take about an hour for the actual surgery.

I see Dr.Bragg tomorrow and hoping either the MRI gives us a clearer answer or she has thought over the things I mentioned here last week as these symptoms seem to be happening more and more frequently and progressively worse/longer lasting. It is almost like the pressure headaches and then to top it off the c-spine/upper neck into skull headache. =/ YUCK!

Sat I am volunteering at a Walk for Hydrocephalus at the Zoo in Milw in registration and the kids area and then going to my brother and sister in laws who are moving that day to an place about 30mins from the Milw Zoo. Should be fun if it doesnt rain and really is in the 60's as predicted - I sincerely hope it is a good day!!!! (especially symptom wise it is sooo un-predictable.)

Below was written monday  monday after getitng home froma long day in Milw and at ERT (infusion).
Thanks for stopping by,


Monday Oct. 9, 2012
This morning I was at ERT and up front getting paperwork from the secretary after coming back from across the parking lot/walkway of our clinic building (Pharmacy Children's Hospital, infusion is done in Genetics clinic not an infusion center) and after stopping back up-front before heading in back my former GC (genetic counselor) happened to also be standing at the desk talking to several people and she commented to me: "You look really great, Erica!" - this was the first morning ive felt semi-energetic (bouncing off the walls a bit actually) in probably a week (feeling particularly mind-numbingly bad on/off this past week) and so it was kind of nice actually to have someone think I looked really good when in fact I still hadnt combed my hair this morning (the hidden blessing I guess of naturally wavy, shorter hair)  and no makeup, no nothing special on! I love when even when you do feel like garbage run over and really havent done anything to look good people still think you look good probably bc of your mood and they dont see the fact that you dont feel good! I actually do not much like talking about how I feel (a product of too many drs maybe) and so days like today when I was feeling "better" but still hadnt done anything in particular are (perhaps selfishly!?) mini mood boosters, reminders that what I  have  or am feeling doesnt have to get the best of me! =)

Tuesday, October 2, 2012

Neurosurgery, Appt, C-spine MRI, Further discussion on options

And so it continues....

Ive said it before but will say it again I am eternally grateful to Dr.Bragg (neurosurgeon) for continuin to want to help me, for believing me and for caring when she easily like many others could just refuse to to anymore in trying to help me..

Today's appt she opted not to tap either of the shunts which was originally the reason for the appt but instead reviewed the MRIs with me and her NP (whom I also really like) as I was telling her about how the headaches cont to be worse anytime I bend my neck even if for very short periods (such as fastening pant buttons, straightening shirt, washing hair, looking at the computer (ive found better ways around this one) and all the little times we un-knowingly bend our necks to do some activity for a short period of another. Originally c-spine MRIs where ordered w the last MRIs done 2 weeks ago but for whichever reason they appear to not have been done and she when thinking about this H/A w/neck position issue wanted to make sure there isnt a phenomena of induced chiari (where the tissue of the brain is pulled down and essentially plugs the brain stem area - I think I have that right?) and/or to check the area around the previous laminoplasty (screws/plates) at C2-4 for position and is there narrowing in these areas or above/below these previous decompression/partial fusion as compression is a common issue in MPS pts spines.  It looks like that is scheduled for next thurs) - her NP was trying to see about getting it done today but since this 1. isnt Dr.Bragg's normal clinic day and 2. she has to reset the 2 shunts after any MRI imaging we opted to schedule for one of her clinic days.

She again talked about some options she has been thinking further about including is there an absorption issue going on w the 2 shunts being in my peritoneum (a pocket of the stomach essentially)  and would it be useful to externalize 1 or both of the 2 shunts either at the peritoneum area or for the VP shunt at the chest level and see if these while being 'open' and 'functioning' but draining outside the body bring better symptom relief and more efficacy similar to the external drains but this time using my own shunt)s) as the external drain and then when done w the external drain she would just have to revise those areas and replace that specific parts vs having to monkey with the 'minefield' that is my lower back. She wondered from a few articles she has read and 1 I sent her if in MPS we have absorption issues secondary to storage (I think thats how she put it)  could the shunts conceivbly work better in a diferent way, she doesnt know as we have restriction in almost all organs and even our skin is very tight and thickened but she has experience w other patients (non-MPS) who the distal catheter has been moved to the chest and because of the increased back pressure this area provides (vs the peritoneum) that that might help keep 1 or both shunts functioning better. She thought possibly moving the distal end of 1 or both shunts to the chest area after a trial might be a good idea to see if draining here would be more efficacious. -Clearly we dont know but feel like we have to explore various ideas as right now it isnt working as well as it should given the on-going symptoms I have and yet how good of symptom relief I had with the lumbar external drain trial (prior to our placing the 2nd shunt) and the same w the Ventricular external drain last fall and the pseudomeningocele (fluid collection pocket under the skin) we dealt with but which I had no symptoms during.

Another possible option is to move the trajectory of the VP shunt from the inner ventricle where  the  ventricle catheter now sits in to the back of the head where she could get a better angle of catheter placement in to the ventricle and  where there is more area (again I think thats what it was) to work with in placing the catheter given the very tiny ventricles.

I am sure I am forgetting some things as we literally talked about many ideas and possible options between Dr.Bragg, Sue (NP) and myself.

Nothing is ruled in or out yet as far as what we will do to manage this shunt(s) issues but we are getting closer to narrowing down our options and what we might try. Too quote Dr.Bragg "she still has a bag of tricks we can try." - for that I am grateful as this shunt stuff does wear you down. I sometimes actually laugh to myself bc I know even when I am in pain the vast majority of the time I dont look like it and can still be engaged and asking questions and sometimes I think that can actullay w many providers be a downfall as they cant look past "how good you look" and so I am grateful she and her staff try to help seeming w/these endless issues and can look past how I "appear" to know me well enough that I am not simply making up what I say.

I am grateful,


Friday, September 28, 2012

Took the leap; tattoo..

This is the tattoo I got done on Tuesday, ive wanted to do it for a long time but put it off bc of not feeling all that awesome and finally decided feeling great or not I wanted to do it, to do something for myself and so I did! :) I thought it might hurt worse than it did but really in all honesty wasnt that bad other than a few moments where my foot was jumpy but that wasnt painful just "jumpy". :) I like it and the colors now are actually brighter so the updated picture is below.
I talked to my neurosurgeon's (Dr.Bragg) nurse today (thurs) and Dr.Bragg wants to tap the shunts so that is going to be on Tuesday which I am not really looking fwd to as since ive had the 2 shunts in place (with benefit just some problems too) anytime we monkey with the reservoir or tap either  of the shunts I get sick for 12-24 hrs after with fever, chills, throwing up and really, reallllyyyy stiff, achy joints which are incredibly no fun. I just hope we can get answers from this bc even since last week I feel pretty terrible even during the day which isnt great.  =( Appetite and stomach are always some of the signs to me that somethings not 'right'. =/ Argghh, have I said how much I dislike shunts?!?  Because I seriously hate this!                                                                                          
I am teaching sunday school again this sunday and feel so un-prepared. I am adding to this a day later and spent a few hrs today finding a few activities to go with our sunday lesson (The Fall of Jericho) and reviewing everything so hopefully it will go well. I wrote down copious notes for myself as I have to review things over and over and over again to be able to remember my thoughts and having notes to go with each lesson and acitvity oes help. We had a monthly meeting w the pastor heading up SS and most of us teachers last night (weds) to go over the lessons for Oct which was interesting, informative and actually I learned some things. Those things though make me feel like I am hopelessly in over my head at times! :) I am guessing I will find a groove and feel more comfortable the more I do this and it is nice to be sharing sundays w the other teacher so the following week I will have off and so Zander will likely spend the night as i'll go to church Thurs night given we have something going on, on sunday I want to do.
Otherwise it has actually been a fairly quiet week here which was pretty nice as I was feeling pretty aweful in the mornings and through most of the afternoon most of these days and just nice to be lower key and get some thing done around here. I think the insurance provider changes are finally settling down and I just have two new providers left to meet in Oct but tests are already done for the 1 and the other the testing is the same day I see her (urology). I am staying w my current Pain Mngmt dr vs going to the one I met and using my secondary insur to see her and doing the same w/local PT as it was ridiculous to be driving over an hour for a 30-45min weekly PT appt when I can use my secondary insur and go 15mins away. CRAZY!
I'll update sometime next week on the neurosurgery appt. =/ Hoping it goes well with few side effects after this time.                                                                                                                                          
Thanks for stopping by,