It is mind boggling how much things can change in the span of a few days. I last updated Tuesday morning, and that afternoon we made it in to our pediatrician. Dawson was still doing pretty well - the purple on his thighs didn't seem so bright, and he was able to climb up onto the examining bed with no problem. Dawson's pedi thought the diagnosis was the same thing, and we decided that he'd return Thursday morning to check things out again.
Unfortunately, that night Dawson took another turn for the worse. He again woke up screaming and crying that his legs hurt, and around 9pm Tuesday night we discovered that the purple on his legs was now extending near his ankles. On top of that, his penis was EXTREMELY swollen and was also purple. We again called the nurses line, and they instructed us to go to the ER, so we did, for the 2nd night in a row.
Everyone in the ER recognized us right away. After getting checked in, we this time had a pediatrician that came and looked at Dawson. He again determined the same thing - HSP. After checking with a urologist, he again let me know that there is nothing they can really do to treat it, but gave me a prescription for steroids and sent us on our way around 1am. That night was one of the worst nights I've ever had with Dawson - he cried out and begged for more medicine all night. Our best time of sleep was a little before 5am, when Dawson decided he wanted to lay on me on the couch. He was able to settle in and get about an hour and a half of solid sleep.
Wednesday morning I spoke with the nurses and our pediatrician, and our pediatrician also called us back as well. We again just talked about keeping an eye on everything. Dawson spent the entire day sleeping, and by 3:00 that afternoon, we knew that he either had to go to the bathroom or go back to the ER. David and I took him to the bathroom to try to get him to go potty, and he could barely stand...and once we pulled down his underwear (him screaming and sobbing in pain), we saw why. His poor penis was covered in giant blisters, at least one that had popped. We ended up again at the ER.
This time, his blood work came back terrifying. His blood was scary thin, but also clotting like crazy in his legs. They immediately said they were going to transfer him to the Children's Hospital.
It has been the start of a nightmare and a lot of uncertainty. His blood work continued to come back with bad news, and they were doing a lot of transfusions. His kidneys were having issues, and there were concerns about his bladder and liver. Additionally, the purple on his legs kept getting darker and darker and spreading to almost every part of his legs.
We found out that his diagnosis of HSP was incorrect. Incorrect, but not totally off base. What we've been told by the numerous specialty docs that have come in is that even if he would have been admitted on Monday, they wouldn't have been able to do anything to prevent this. Officially, it's being referred to as Purpura Fulminans, but his situation is so unique that docs are pretty well stumped. His situation is so unique that one doctor mentioned that they were only able to find about 10 cases that were like his, because the only real symptom of purpura fulminans he had was the purple legs - nothing else really fits the bill.
So, here we are another day. We've gotten to where everything is stable - his kidneys look great, and his most recent blood work has come back good news - he hasn't had to have a transfusion since last night. We are now just waiting to see what will happen with his legs. We know that his feet are not getting any blood. They are purple and so, so cold. We were informed yesterday that there is a VERY good chance he can lose parts of one or both legs. It's absolutely terrifying, and we essentially have to sit and wait. The most recent update is that his left leg seems to have reduced swelling, but we won't know of the extent of the damage of either leg for a few more days at least.
Dawson is currently sedated and intubated. He wakes up every 6 or so hours, and his terrified, because he is strapped down so he doesn't pull out his tube. He recognizes David and I - the first time he heard my voice, he started crying, mouthing, "Mommy, Mommy." The same thing happened when he first heard David's voice. The tears just started flowing. It's encouraging and beyond heartbreaking.
Tomorrow they hope to take the tube out. Part of the concern is pain management. The burn team is treating his legs, and we want to be sure that we can manage his pain as best as possible.
My mind is reeling with all of the possibilities of what his future will be like. Regardless of what happens, he has a lot of pain to go through, and it hurts so bad to think about. I'd give anything to take away his pain. I want to hold him with no wires, annoy him with my kisses, and breathe in the smell of his hair. I haven't left the hospital since we got here, and while I know that he's going to be here awhile and I probably should, I just can't do it yet. I just can't.
There are a lot of people praying for him - I am amazed at the number of people cheering and praying for my boy, and am so grateful for the support of everyone.