Day 24 and 25 Post-Op - In-patient -

This was all written yesterday and in the days before - I will try to update later today after I talk to Dr.Bragg and get updates on whats going on. She did say yesterday she was shooting for the end of the week (yay!!) and her resident said this morning on his rounds they where working on arranging the Lidocaine infusion and would have to do it with cardiac monitoring.
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Erica

Day 25  - 5/22/12
Just a few quick notes from when Dr.Bragg stopped by today. She tuned the VP shunt back down to the lowest setting and left LP at it's setting. 1.0 LP shunt / .5 VP shunt
She also is talking to a Rehab dr she works with on some of her patients to get his opinion; see if he has any recommendations as he does alot with her with patients with spascticity and muscle spasms.
She also is gathering information on Lidocaine infusioin which is typically done over a few days and every so many hours I believe.

                                                              Paedi-gav - 2nd valve anchored at collar-bone of VP shunt to provide  back-up perssure and prevent as frequent occlusions in catheter due to ventricle collapsing.

 This is a picture of what my Port-A-Cath looks like although obviously only one of these not the whole lot is implanted and is done so at L upper chest for the weekly IV infusions and in-patient procedures/stays.

                    This is a picture of the Aldurazyme otherwise known as 'Golden drug' due to it's                            cost per week.

                                   This is a picture of the medtronic-strata valve that is implanted both in my brain and tunneled down to my abdomen to the peritoneal area in which it drains as well as the same shunt is tunneled from my mid-thoracic area of spine down to lumbar area and then out of the spine on the R side and on R side the valve and reservoir are implanted under the skin and then continues in the tunneled fashion to same abdomen region as the VP shunt where it is anchored and drains.

                              Last this is a picture of the screws and plates in my neck a few months after the c-spine decompression surgery 3 1/2 years ago to stabilize the C2-C4 region of spine.

Day 24
Well I guess to look at  a positive side of being in-patient so long and in general being on the Neuro floor so often is that certain nurses will request to have me on each shift when they are on and I also can request to have specific nurses. This monring it was the nurse that has done my weekly IVE-ERT infusoion the past 2 weeks I had her during the day and tonight the nurse who requested me said she called in on her way in to work to request to have me and make sure I was on her patient list. I wasnt so she asked to have me switched. I think that is just to sweet and does make it a little easier knowing that  these nurses realy like me and I must be fairly easy going. :)

This morning  I woke up with the same headache  I went to bed with and which I had woken up several times and then I threw up several times and so the nurse gave me zofran and another med. It took til labout 1 this afternoon to finally start feeling a bit more normal although the headache was there on and off all day. Thankfully I only threw up the 4 or 5 times this morning. When Dr.Bragg came in this morning she dscontinued the new med and didnt start anything new. I was trying to read up on potential therapies for nerve muscle spasm irritation therapies this afternoon and had thought about botox injections already last night but felt yo crappy and frankly out of it this morning to rememebr to ask Dr.Bragg her thoughts. My day nurse Sally called the NP, Emily and she (Emly) talked to Dr.Bragg about if this might be an option for treating the nerve irritaiton and spasms but they decided that the root of the problem is the shunt catheter sitting in my thoracic spine rubbing on my spine nerves and so the botox wouldnt really treat the source of the problem. I am unsure what Dr.Bragg will say tomorrow but I am going to try and remember to ask her about the lidocainde injections she had mentioned last week when we where talking about diffrerent options to see if that is something we could try. Is worth asking.

Both the LP and VP shunts are now turned down to 1.0 due to waking up throwing up this morning and Dr.Bragg thinking this would maybe help the symptoms. I think it actually did which is awesome.