So we did a "going home" Echo yesterday (Tues) and one of those tests you can tell as they are doing it that something isn't right. Not only did it take double as long (2 hrs) but they had the head-Echo dr in here and then my Cardiologist both reviewing the images and repeating different and new frames. I was so tired I just didn't care admittedly. Not long after that the NP for my Cardiologist came past the room and asked "Dr.E wants to know the last time you've eaten or dranken anything?" - Ding, ding.. Always a give away that they they are wanting to do something with some form of sedation. About 30mins after that my Cardiologist came by and told me they found what they felt was 2 new leaks and maybe a hole on the earlier Echo (leaking) that where not there before surgery or on the post-surgery TEE and he wanted to do a trans-thoracic Echo that afternoon at 2 and had already lined up the Anesthesiologist I had the previous week so she was intimately familiar with my airway and how best to handle this during the Trans-Echo (aka TEE). These Trans-Echo results showed 2 small leaks in the new aortic valve and a hole between the newly enlarged and patched aortic root and either the new valve or another part of the heart; I cant fully remember that part. For now they will since all new issues are small will just repeat a regular (non-TEE) Echo on Thurs and and follow my case much more closely than they otherwise would have to make sure there isn't 1. Bacterial Endocarditis forming (no symptoms of this) or 2. the Hole and leaking don't get worse as if those did they would likely have to go back via the Cath Lab or open heart (cath lab I think) to repair these areas which would be a big deal apparently.
Repeat Echo today (Thurs) showed no change in the 3 new issues and so if blood lab cultures run yesterday come back negative I can get sprung!! Dr.Earing did say I'll have to f/up with him on a weekly basis for awhile to monitor the 2 new leaks and 1 new hole for possible changes or symptoms but otherwise would be home sweet home! I really don't know what the schedule is for Coumadin-lab checks initially. I imagine they go over that info in discharge paperwork. Sutures came out of the 3 chest tube sites this morning and the steri-strips along the sternum chest incision will fall off on their own. The stitches are internal and dissolvable + the wires stay in place and help the broken bone heal, typically in about a 2 month process.
Ironically yesterday (Tues, day of the TEE) morning I had been feeling really great, the complete best in the past week which was actually saying a lot as I hadn't felt too terrible most of the previous few days. I managed to wash my hair myself while semi-leaning over the shower/holding on to the railing and had gotten washed up + dressed + was working with PT. I had walked the halls, I was feeling raring to go! Post-TEE? Not so much, even today a day later I feel like a truck has ran me over both tired and achy wise. With PT I did manage to take a regular shower this morning though and dressed in semi-regular clothes + then took a nap this morning and this afternoon. On a separate note the Cardiothoracic Resident did say I should be able to drive within 1-2 weeks given how well I am doing recovery wise!! Even with this set-backs I think I am surpassing anyone's expectation for my recovery time and even many otherwise healthy open heart pts recovery times. =)
One thing we did forget with the sedation and procedure (TEE) yesterday was to give pre-sedation cortisol replacement dosing and so that likely explains why I had such a terrible post-OR recovery and feel so washed out/drained today. A mistake I won't make again! The cortisol literally acts as the rescue-stress hormones I don't make and helps the body handle stress like sedation/anesthesia, procedures and recovery ability. Yikes, that was pretty aweful crap!!!! I didn't realize it was the cortisol replacement until later Tues night when I was starting to feel slightly more normal and thinking over what could have possibly caused the post-procedure to go so terrible. It finally occurred to me we hadn't given that med in the last min decision to do the procedure and last minute planning.
Definitely something I wont forget even in last minute procedures in the future!
In talking to the Cardiothoracic Resident the other day I asked him what his general experience is with people being able to drive post-op and he said he was fairly certain with how well I am doing I should be able to drive in a couple weeks! AWESOME!! That was some of the best news I could have heard! I am on a 5pd/each hand, 10 pd total weight restriction for 2 months so I will have to have my Dad come over periodically when I do go back home, probably in a few weeks and help me stock up on cat food and cat litter and put these in to large Tupperware containers I can then just scoop out of. =)
On a completely different note I had the same Anesthesiologist as last week and we where talking about what she all used/did differently to get me intubated ("the whole toolbox") and she asked me if I would like her to write a summary of her findings, what she used, and recommends! This was while in pre-op holding for the TEE and as they where getting everything ready in the OR so I didn't ask her how best to get this from her when she has it completed but the Resident paged her just before to ask for me. She commented how my upper airway (throat) is really pretty almost easy to work with but when she got to lower airway or a little further down she said the various Anesthesiologists notes I had given her from UW in no way prepared her for what she was working with and she couldn't emphasize enough that in the future with new Anesthesiologists I needed to not minimize in any way how bad the airway is (they felt if they had taken out the ventilator support to soon they likely wouldn't have been able to get an airway support back in and would have to do a Trach.) She just said how blown away really she was by my features given how 'mild' I look in appearance and yet how difficult of a time she had getting the airway intubated, to use her words "I had to pull out the whole arsenal in your case".
This whole week we've spent trying to get Genetics to get the Aldurazyme over here or order it (given we can get it at UW there is NO reason they couldn't have gotten the drug!!!!). Needless to say initially they told my Cardiology team that I could skip a week since I was a week out from a big surgery (read that again A WEEK OUT!) so they weren't going to order it. My Cardiologist initially sided with them but once I explained quite frankly why I felt they where saying that he began to try and help get the drug. I fought back on this issue and talked to my Insurance Nurse Case Man. who said we could have the drug over-nighted (what we frequently do at UW) and so I passed that message to my GC. Do you think she ordered it Tues? Nope! Weds comes and finally they have decided they will order it but did not have it over-nighted (sooo dysfunctional of a clinic!!!!) and so if it got here Weds I would get it and get infused Mon at normal time yet. No drug yesterday. So today we are waiting for it and unsure if I will get it or not as I would then miss Monday's regular dose. Grr!!! Why if UW can do this couldn't Genetics have had me sign a waiver to use MY OWN DRUG in their ofc 50 feet away or over-night ordered Monday or Tues? I have a 4 letter (non-explicit) word that starts w an L that says why. =/
One of my ERT Infusion Nurses has visited everyday with her co-workers, a different one each day (all whom I have gotten to know, the one is married to the Head of Peds Neurosurgery here at CHW and who grilled me almost 2 yrs ago about Dr.Bragg, not bc she didn't trust her but bc she wanted to make sure I was getting great care.) =) Anyways so they where telling me that last week when I was still intubated and sedated over those 3 days I would frequently try to sit up and mouth "my head hurts" while trying to hold my head. I was actually a little amazed by this but grateful they told me as it validates that I do in fact get the positional headaches and not just in my head (per se)! I completely know Dr.Bragg has always believed me but you still can't help but question yourself sometimes!
So far we are just waiting for blood cultures today to see if I get to go home or not, is day 10 post-heart surgery so not to bad but still will be happy to go home! I can deal with all the post-op fups if it It means my own comforts at home or as is for now at my parents. =)
Thanks for stopping by,
Erica
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