Home Again But Still Confused

We're home (again!). Hmm...where to begin? I feel frustrated, nervous, uncertain, and VERY happy to be home. They discharged us out of the hospital today because there is basically nothing that the doctors feel they can do for us at this point - we just have to wait. Our daughter's diagnosis is still unclear. We were basically told the exact same thing we were told in the very beginning. She might have Atypical Kawasaki Disease. But it was made clear that honestly, the doctors don't know what's going on for sure still, but they sound optimistic. It's still possible this was all caused by a virus (an unknown virus at this point. Her test results for certain viruses hasn't come back yet). Kawasaki can also be triggered by a virus from what we were told. Unfortunately, we did not get to see a Rheumatologist while we were up there because he was gone this week.

Thankfully, her echo-cardiogram came back as normal and the cardiologist said her heart is normal. This is good news as Kawasaki Disease can cause heart problems.

This morning's blood test showed her platelets to still be abnormally high (920) but lower than they were 2 days ago (950). Her neutrophils were still very low (4.5 %) but higher than 2 days ago (2 %). She's on half a baby aspirin to prevent clotting due to the high platelets. Other than her blood tests, she appears to be in fairly good health overall. I was a bit concerned because she has some patchy raised spots on her body that I was pretty sure weren't there yesterday, so her skin still does not look great (in my opinion, it looks worse than it did a few days ago). She was also having more bowel movements than usual yesterday (5). She has a red line on the side of her tongue that looks a little sore. These were all brought up with the doctors, but at this point they are not really cause for concern.

I am pretty sure that our daughter's condition is a complex and somewhat confusing case at this point. I think they sent us home to watch and wait because there was really no point in staying in the hospital right now as we basically are just waiting to see what happens next (gets better or worse) and what her next blood test will show. I do not disagree with their decision to send us home, (although I would have really liked our daughter to see a Rheumatologist, but unfortunately the one we were hoping to see was gone this week). There is no reason why we cannot "watch and wait" at home. If something changes, we see a doctor right away. For this reason, I am happy to be home with her. Additionally, we REALLY like our pediatrician here at home and trust him a lot. He has proven himself to be very competent and caring. In fact, the very first time we saw him he mentioned to us that she may have Kawasaki Disease but maybe an incomplete form of it since she was not displaying a few of the classic signs. Turns out, after seeing several other doctors that this is still the tentative diagnosis. Our pediatrician here at home spent hours setting things up for us to see another doctor and to get us to see a cardiologist asap. I cannot say enough good things about him. He truly cares about his patients and tries his best to figure out what's going on.

Truthfully, I am still extremely nervous. We got the impression that the doctors are optimistic that she'll be alright, but there is a lot of "unknown" at this point. The "unknown" part is what's scary for us. Last time we waited at home for her to be tested again, the test results were a lot worse and we got sent to another hospital. We really didn't see that one coming, so that's why I am more nervous this time around. We will see our pediatrician and do another blood test next week sometime.

I am the type of person who would like a clear cut diagnosis. A yes or no. This maybe/maybe not/ "wait and see" stuff has shown me that I need to work on being patient and I need to trust God more! The human body is very complex and sometimes things are just not that clear cut. Doctors are only human; although they know a lot, they do not know everything and we cannot expect them to always have answers. Medicine has come a long ways in the last hundred years or so, and I am thankful for all that they have been able to figure out so far.

Obviously I cannot tell you just how much we love our daughter. It's hard to not be over-protective of her. It's hard to not be obsessive about keeping her in a little bubble until her neutrophils get better. It's hard to know whether or not to probe for more answers or to just accept how things are for the time being. It's hard to sleep at night because I'm worried something might happen to her. It's hard to hear her cry and scream from being poked and prodded so much these past few weeks. It's hard to tell her "no" and properly train her instead of letting her get away with whatever she wants when she's been through a lot and she's not healthy yet. It's hard not knowing what's going on.

Thankfully, I do know One who does know exactly what is going on. I really just need to let go and let God. This whole thing is definitely stretching my faith. That part is good. I have been depending too much on my own strength.