Last week was a rollercoaster ride.  

Warning: this is a really long post.  

Josie’s week:

As some of you might know, Josie had open heart surgery in January of this year. Josie was on the mend and ramping her work hours back up to normal.  We were already in the planning and executing stage of getting her back into her apartment. However, Josie was getting more frequent headaches. She made an appointment to see her primary doctor after vacation. We thought nothing of it and went about our plans.

Upon returning from vacation on May 30th, Josie went to her appointment and had blood work. The next day she received her results and promptly received a phone call from her doctor. Her iron was low, and even more concerning, her hemoglobin was very low. Together we called her cardiologist, which resulted in a scheduled appointment for the following Friday at University of Michigan. Ok good, we have a plan. 

I then started learning the extent of Josie’s symptoms. Extreme exhaustion, headaches, and yes, she looked quite pale. Sunday rolls around, and now even taking a shower was too much. But she had a dinner date with a friend from college, who was making an hour drive out for this dinner. She did not want to cancel it. So, off she went. Meanwhile, for the first time since she was a baby, I was worried. I am not a worrier. I just kept thinking, “I can’t let her go to bed.” She returned from her dinner and together we called the U of M on- call cardiologist. I suggested a three hour drive so we would not get stuck at Cleveland Clinic. She felt that was a bad idea and recommended that we just go to the local ER.

So off to the ER we went. Within the first hour we were there, her sats started dropping, and right before our eyes she continued to deteriorate to the point of her oxygen being cranked to 15 liters. They were getting nervous because she needed blood and they did not have any. She needed to get transported, but they could not figure out where. The decision was finally made to go to the main campus of Cleveland Clinic. First an ambulance came, but it was quickly decided they did not want to risk the 40 min drive, so they changed to a life flight helicopter ride. No she was not as excited as I was; and no they wouldn’t let me go with her. Chris and I followed her in our car.

At around 1:00am, Josie was admitted to the ICU adult side. New for us (congenital heart conditions are frequently treated on the pediatric side at U of M). We got to stay with her for about 45 mins until they kicked us out because there were no visitors at night. We had nothing with us. We found a hotel, just slept for as much as we could, and showed up right at 7am.

She was stable and moved to the floor by late afternoon Monday. With still no true answers, we struggled to navigate this new hospital and deal with the adult side. Nothing happened on Monday and no doctors were seen.  We were frustrated to say the least. When the night nurse came in Monday night and said, “Ok I have 2 units of blood for you.” We all said, what? That was when we unleashed Travis on this poor unsuspecting night nurse and doctor.  Lots of questions were asked by Travis and I feel like this was the pivoting point of more testing and finally getting things moving. 

After all the tests were done, and many days of wondering what the heck is going on, we got our answers. Josie came in with very low iron. That was one problem.  This was most likely caused by her taking blood thinners and just being a girl and bleeding once a month. Mind you, this was only concluded after a million tests were done to see if there was any internal bleeding. No bleeding was found.  

Second, and the biggie in my eyes, Josie’s hemoglobin was at 7.6. The low normal is 12.1.  Again, after many tests, it was determined that her repair of her Mitral valve is causing her blood to become sheared while going through it. Not to mention her mitral valve was now leaking at a 3+ to 4+, 4+ being the max amount.  After much research yesterday and some explaining from Josie’s U of M cardiologist, we learned that her mitral valve repair included a ring being put on the valve to try to minimize her leak. That is what her red blood cells are hitting and then being damaged, leaving them unable to carry oxygen. We also learned that the most likely fix to this problem is another heart surgery and a mechanical valve being placed for her mitral valve and being put back on blood thinners for the rest of her life.

Her U of M cardiologist feels she is good enough now to wait for her appointment in August. A little nerve racking if you ask me. She is now on iron pills, folic acid and an attempt to make her diet more iron rich. We had a lot of twists and turns through the whole thing. On Thursday morning, the plan was for Chris to leave and head to guys’ weekend and Joanne to come out and help.  Josie’s first blood work that morning came back saying her hemoglobin had dropped again. Chris’s dreams of getting away were diminishing. So we went to the hospital together to see what was going on. After a second blood draw, it was revealed that the first one was incorrect and she had a hemoglobin of 11.3. Josie and I looked at each other and told Chris to leave. We called my brother to secure his bed in his camper and called Joanne to tell her it was back on and come on out.  

It was a long week of hotel and Airbnb hopping, wanting to stay near and not knowing the amount of time she would be in the hospital. We reluctantly started leaving Josie every evening. We did not have to, but she was doing well and could speak for herself. After she passed 2 final tests on Friday we were able to bust out of there late Friday evening. We then enjoyed a lazy pool day with Aunt Joanne on Saturday.

I, more than Josie, am truly feeling the effects of last week. Josie is already out and about. I am feeling exhausted. We have decided to keep Josie at the house and cancel her apartment. She may not be able to get back up to her full working schedule.  

I wish I could say that this is the end of the story but there is more to come.