Cardiac (Valve) Surgery day 4 post-op

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

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

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

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

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

Erica