Cardiology Fup update, An Anesthesia Provider-Summary option

Yesterday was the 1st fup with the Cardiology Team since I got released last Friday including Labs, Xray, repeat Echo (3rd regular one since the surgery) and fup w the Cardiologist. All seems to con't to be going ok with the new post-surgery VSD and 2 aortic valve leaks being stable and INR (blood thinner level) was just a little low so that med dose was adjusted accordingly. Their main worry cont's it seems to be is there a infection (bacterial endocarditis) but I have no symptoms of this so I think they just are watching closely to be sure.
The next follow up appt will continue to be in 1 week with Labs and repeat Echo followed by seeing the Cardiologist again. Otherwise the only change was to the dose of Coumadin as level was somewhat to low, this just went up to 6mgs 2 days a week and 4mgs 5 days a week. This level going up and down isn't that unusual in the beginning as ones body adjusts to the med and blood levels being thinned.

Otherwise i've had to change around a few appts because of these Cardiology fups with seeing Pain Mngmt dr next week and then Neurosurgery the following week. We have to wait 8-12 weeks to replace the Thoracic shunt back in to the pleural space but Dr.Bragg had wanted a fup appt about a month after I last saw her or when I was feeling well enough from the heart surgery. I think one she may want to check the shunt settings (?) and 2 I imagine we'll begin to look at placing the shunt back ie a timeframe and plan which I imagine will be sometime in Oct. though not certain. Otherwise just kind of bored and looking fwd to being able to drive again!!!!

Below I've posted a summary letter I received from the Anesthesiologist at CHW who did the heart surgery and the TEE as she emailed me this the other day as a means for future new providers/surgeries to be aware of what they will be dealing with. I only rarely post this kind of thing but have been thinking about this and really think it is a good example of something MPS Families/Adults might want to consider requesting from their Anesthesiologist as it can be helpful, is well laid out and explains all airway issues this dr ran in to very well. As I think I posted in one of the previous updates this dr commented to me how un-helpful the actual Anesthesiol. notes from UW where in preparing her for what she would see and so she asked me if writing something like this would be helpful in order for future, new drs to not minimize the issues ahead of time. I will leave the providers full name off the end.


August 3, 2013

To Whom It May Concern:

Last month, I had thAuguste pleasure of providing anesthesia to Erica Thiel for aortic valve replacemen and subsequent TEE prior to her discharge.  As you are aware, she has Hurler Scheie type 1, which is commonly associated with airway challenges during anesthesia, becoming progressively worse as the patient gets older.  

Erica has a number of features on physical examination that suggest intubation may be challenging: limited extension of the cervical spine due to her disease as well as cervical fusion from C2-4; variable degree of mouth opening, and Mallampati III. However she has normal jaw contour and generous thyromental distance.  

Her face is somewhat narrow and the #4 mask provides a much better fit than does the #5 adult mask. She is easily ventilated by mask with or without muscle relaxation.

It should not come as a surprise that direct laryngoscopy was not successful. The Macintosh #3 blade would not advance to the base of the tongue. A glidescope provided visualization of the posterior aspect of her larynx and vocal cords but I was not able to advance the endotracheal tube into the hypopharynx due to her small mouth size and limited opening under anesthesia.  Nasal fiberoptic intubation was successful after dilation with 26 and 28 nasopharyngeal airways, although the insertion of same resulted in nasopharyngeal bleeding.  In addition, once anesthetized, she had copious oral secretions.

Following her aortic valve replacement, she remained intubated to avoid potential airway difficulties in the setting of emergency return to the operating room for bleeding or other surgical complications.

She underwent TEE prior to discharge, and tolerated the procedure well. She was progressively sedated with midazolam, fentanyl and ketamine without any airway challenges throughout the case.

She has adrenal insufficiency and thought that perhaps her dizziness and strange sensation following the procedure might have been due to the lack of a stress dose of steroids, which I did not administer because I did not think that the echocardiogram would be sufficiently stressful to her physiology.  

Erica is keenly aware of her medical issues and deals with them quite effectively.  She has requested that I provider her with this information hoping that it may be useful to other providers who are unfamiliar with her history.

Sincerely,

 

Thanks for stopping by,

 

Erica