Back to No Diagnosis and More Tests

As of yesterday, we have no diagnosis for our daughter. Our pediatrician at home here says that he no longer thinks she has Kawasaki Disease. He said it's still possible, but at this point we are to assume that we have no diagnosis for her yet. He said he has seen numerous cases of Kawasaki and our daughter's symptoms and condition just don't quite fit.

We had another crazy weekend with two trips to the E.R. (in 2 different cities) after we found a strange lump/bruise on her chest. Not having a clue what it was and worried about aneurysms/blood clots/bleeds, etc. we took her in. We weren't sure if it was anything urgent, but with all the strange things that have happened with her, we didn't want to take a chance. Better to feel stupid for bringing her in with just a bruise than to feel stupid wishing we would have done more. The doctors we saw in the E.R.s had no idea what it was. They suspected it to be a bruise that had calcified or a cyst, but basically they said it was very strange. We got home at 4 a.m. on Monday morning, and my husband had to work in the morning. We were crazy tired.

We decided to take her to the pediatrician on Monday (yesterday) evening just to get her checked out again because I noticed she had another sore in her mouth again, this mysterious bruise/lump on her chest, red spots on her neck, she was not drinking anything, was quite pale, and sweating a lot at night. We have been told that if anything strange appears/happens to see him right away.
(Can I just say - I am SO thankful for our pediatrician here! He is amazing as far as doctors go. He is not satisfied to just "guess" at what she has when she isn't really getting better and her blood work is still not good. He is really trying to get to the bottom of this all)

He checked her out again and told us that the bruise/lump on her chest is a skin bleed. BUT...he is somewhat concerned because he believes it might have happened spontaneously. That would be a very bad thing. He said it's possible she hurt herself, but at this point he is going to consider that it could very likely be a spontaneous bleed. He really wants us to see a hematologist if this doesn't sort itself out quickly. He also said that she has a really bad mouth sore and it is extremely painful for her. That is probably the reason why she is not drinking. He told us to be VERY careful to keep her away from infections and sick people. We also are to keep a very close eye on her for more strange bruises. So, she's getting more blood work done on Thursday (poor girl, her arms are black and blue from all the pokes), and then we are going to go from there. This way, our pediatrician said he will have time to get us to see someone, send us for more tests, or figure something out before the weekend. If her blood work isn't better on Thursday, I'm pretty sure we'll be off to see a hematologist asap. Please keep praying for her. They don't know what's going on yet. It's still possible it's a virus, but if it is, it's really doing a number on her. I'm afraid this could turn out to be even more serious than we imagined. We just don't know yet.

As parents, we cannot tell you how hard it is to have your child go through all of this. I am trying not to worry, but it is very difficult. This is by far the hardest thing we've even been through. Yesterday morning I was not doing very well (emotionally, physically, mentally). The worry and exhaustion caught up with me, and I cried my eyes out. I feel like I can't sleep, can't eat, can't do anything until we figure out what's going on. Today I am doing better. I am still tired, but I feel better overall. This has been an emotional roller-coaster. We pray every day that Jesus will heal her, according to His will. I was talking with my good friend yesterday who told me that her husband said, whatever happens, God will get the glory for it. Though we don't understand why this is going on, we know there must be a reason - that reason being that God will glorify Himself through this. We just aren't sure how this is all going to work out yet.

We cannot tell you how grateful we are for all your prayers. We know there are literally hundreds (possibly even a thousand) people praying for our daughter through this all. We overwhelmed by your support through this all. Please know how thankful we are for all of you.