Today was quite an interesting day; it started off a bit rough, eased up during the day with a few angels who came to visit, and ended quite nice. Let’s begin…
Rounds with the doctors caused a bit of anxiety. After going down the line and discussing all of her body systems (as is protocol) we ended up with a “good pile” and a “bad pile”. Jane’s good pile is that her mitral regurgitation (the leakage from the left side of her heart) has improved over the last two echocardiograms, her kidneys are showing signs of recovery and improvements from the previous damage, she is tolerating feeds (with the exception of a few throw-up episodes, but nothing that cant be resolved), she is aware and moving which shows good sign of brain and neurological function, her blood work that is done daily shows a fair amount of stability as far as infection and other systems are concerned, and her respiratory system has shown improvement to the point that she is on minimal vent settings with the talk of extubating her when all is stable. Her “bad pile”is that her liver is not improving and they dont know what the problem is. The dr said she is very concerned and said that something needs to be done ASAP to figure out what the problem is before anything spirals out of control. The med team decided to involve the GI team to get their recommendations. We found out today that they have suggested a liver biopsy which is a surgical procedure that we arent thrilled about. But, it is almost guaranteed that they will be able to discover the problem by looking at the tissue of the liver. Because her liver is not functioning optimally she is at a higher risk of bleeding since her platelet levels are low, which is regulated by the liver. This is of concern because Jane has an RA (right atrium) line that they would like to take out, but she is at high risk to remove it because of the elevated pressure in the right side of her heart and the risk of bleeding after removing the line. Since her platelets are low, which help with clotting after bleeding, she may not be able to handle the removal. The liver issue that she is having is causing the numbers in her blood count to fluctuate, is causing her to have jaundice, and is continuing to cause build-up of sludge. Although her mitral valve regurgitation has improved it is still a concern that will need to be addressed at her next surgery if it does not improve with growth. Lastly, the girl just needs to grow. Nutrition has been on the back burner as we dealt with all of her issues, but now it is on the front line. To top it all off, yesterday and part of today she kept crying and lay there helplessly. AHHH–that feeling of not being able to do anything for her stung me.
As we moved forward in the day, we enjoyed a nice lunch with more people who came to visit. Someone once told me that visitors are like angels and I do believe it! We cleared our minds as we all went out and got soaked in the rain. When we came back I was pleased to see that our nurse had swaddled Jane and gave her a pacifier. I didnt even know she could have a pacifier with a breathing tube in, but apparently she can and she likes it. What a relief!! To see her sleeping calmly put me at ease. To end the day, we had another visitor who reassured me that Jane was getting the care she needs. I was starting to feel uneasy about all of the “I dont knows” that I keep hearing all the time.
With time and patience….I guess.