Wow a week ago today I was heading to the hospital to bring Michael home.... Time is already passing much quicker than I would have imgained. Michael is doing ok and has only had a few hurdles in the past week....
The coumadin hurdle! What a crazy drug with all of its effects... We started the week off great with the visit to Michael's GP and his count for the INR test was 2.8 then on Thursday it went up to 5.1... so a bit of confusion followed. As his GP was not in the office on Thursday his Physician's assistant told Michael we needed to phone his surgeon to get his reaction and recommendation before adjusting his coumadin. We then phoned surgeons office and one of the surgeon's assistants we had worked with in the hospital phone back. I talked with him at length and he questioned everything from what Michael had been eating to whether or not Michael had any alcohol to drink... He was very thorough and specific about his questioning and then directed me to have him not take coumadin for 2 days, to be very careful with activity, to not shave and then be re-tested on Saturday. About an hour later the GP called back and said he wanted Michael to skip one Coumadin, then take 1/2 of the dose for next two days, then come back in on Monday for re-test... So we followed the course of the GP and will now see what happens with the INR test tomorrow morning.
In the meantime we have managed a fair amount of walking, which seems to help Michael feel better, but then he sleeps for hours! Yesterday he took a 3 1/2 hour nap after we got home from our walk. I keep nagging him to use his spirometer too.
Last night Michael had a hard night with sleeping. He sat up in bed for about 3 hours in the middle of the night because he could not get comfortable... he took a lot of extra pain medication too. He slept until 11:00 this morning to catch up.
The journey and balance of pain medications for Michael is going to be a tough one!
Wow it is hard to imagine that Michael has been home for 48 hours and we are actually starting to feel like we are getting into a "normal" routine. Tomorrow is one week out from when surgery was performed.... seems like yesterday and forever ago too!
Michael has done amazingly well, is blending resting, sleeping, walking up the driveway, eating well and even answering emails from his desk here at our house. We spent most of Monday getting him settled, getting the house organized (I ended up purchasing motorola two way radios for in the house... our version of the EASY button Adam described).
We had a doctors appointment too, which was a bit of a juggling act Monday morning as Michael has never had a primary care physician, instead he has used whichever doctor has been on duty at our local health clinic here in Park City. We chose a primary care physician that was able to meet with us and learn about Michael's history as well as conduct the required test because of Michael being on coumadin(INR is what I think it is called). All went very well. We then managed to "drive by" Michael's office to pick up his laptop because he really wanted to have a way to be connected to his work world productively when he is feeling up to it.
Health of the helper is crucial... so I went for a hike very close to home with my two way radio in hand... we tested it throughout my hike and it worked perfectly. So much so that I snuck another one in this evening. Michael walked a little further today as well. He is beginning to feel more discomfort at his incision site. His only other consistent challenge is using that Spirometer... I am the spirometer police and insist insist insist he uses it!
I am lucky that I can work from home and have a great team of co-workers that have really made this possible. Tomorrow I am going to head in for a meeting or two, which I am sure will feel a bit anxious. Otherwise I am going to be working from home until next week. We are hopeful that Michael will have continued good progress!
At least that is the plan at 8pm on the 3rd day after surgery... Yesterday was a bit of a blur. I managed to go to two work meetings after starting off with a visit in the hospital in the morning followed by a lunch visit then back at end of the late afternoon. In the morning they removed one chest tube and in the afternoon they removed the last chest tube. Michael had visits from two friends yesterday and two today. He has been up walking quite a bit and today we were allowed to go for a walk outside... A two hour nap followed. He is trying really hard to be faithful in using his Spirometer no matter how painful it is.
They are going to take the IV out of his neck tonight as there is some belief that his slight fever could be atttibuted to that being there for this extended period of time... His blood pressure is quite low, but I am assured this is "normal". I must admit it is pretty overwhelming knowing I am going to be the "nurse on duty" once we leave here. I have tried to ask as many questions about his vitals, his medicine and his general state as possible of every nurse, nurses aid or doctor that comes into our room. Michael is a bit uncomfortable with all the questions I am asking, which is not good, but I just feel like I need the knowledge to know what to look for. One thing we did not realize is that even though he got a pig valve, his surgeon wants him on coumadin for three months... Because of that there are all of the associated blood tests he will need to have in the next few weeks to make sure all is in check. Not too sure if this is common, but it was definitely a surprise to us.
Because we live up in Park City, coming down to Salt Lake City for cardiac rehab is going to be a trick. We are going to see if the new community hospital is offering any of this service. Otherwise I will be doing a lot of driving and taking a lot of time off of work!
The balance of caregiver and spouse is certain to be a test..... but clearly worth the journey to "keep on tickin"
Wow, what a difference 24 hours can make... Michael's surgery did not go quite to plan but he is doing very well...
After the doctor decided to try and repair the valve he had to do it by not using the minimally invasive method. He was well aware of Michael's strong desire to have the surgery done that way so he came out to discuss the repair option with me before proceeding. 2 hours later I received an update letting me know the rapair had been completed and that they had just taken him back off the heart lung machine... 15 minutes later the surgeon nurse let me know that the repair was not holding and therefore the doctor was going to replace it afterall... The replacement with a pig valve. Another 2.5 hours pass and then the surgeon came out and talked with me to let me know how he felt that the repair was good but not good enough so he decided to replace. What a roller coaster....
Once in ICU Michael made good progress and had the breathing tube taken out about 4 hours after arriving in the ICU. That was a tough one for him but he felt a lot better once it was out. I went home at just before 8pm as I was not allowed to stay with him in the ICU.
When I arrived at the hospital at 9am this morning he was sitting up having his breakfast! What a sight to see. From that point of today Michael has made even more progress. He was moved from ICU to his own private room and after arriving he even took a walk an hour later with his cardiac re-hab helpers. We are at the University of Utah hospital and the caregivers here have been amazing so far.
Michael is not comfortable, as might be expected, but he has managed to get in and out of his bed to sit in an upright chair. We had one unexpected visitor, otherwise Michael has said he just is not up for visitors yet. He is running a slight fever which is our biggest concern right now. He also continues to test high blood sugar levels so they have been giving him insulin (he has never been diabetic).
I cannot adequately interpret Michael's feelings but there have been points today that he has been reduced to tears after he has had to exert himself. The staff keeps assuring him this is a perfectly normal reaction after all he has been through.
I have decided not to spend the night here tonight even though the room accomadates for that. I can tell that I need to get my rest to be here 100% when I am. Hopefully tomorrow Michael will begin to have some of the tubes removed!
We arrived at the hospital at 7am, Michael was rolled out of the staging room at 8:30 am right on time. The surgeon met with us, the anistigiolgist as well. I am in the waiting room with many other families and within the first hour the surgeon came out to let me know that he felt, after getting the pictures through the scope that he felt he could repair the aortic valve vs. replace it... this meant he could not do it minimally invasive, which was Michael's first choice. He explained to me the benefits of this method and thus I agreed he should pursue that. Unfortunately an hour and a half later they let me know the repair did not work and so they are now back to doing the replacement. I know that Michael will be disappointed that Minimally Invasive did not happen yet I feel that the doctor made the best choice to try and repair it first.... another hour or two of surgery for now