Deja Vu?

I think I must subconsciously like hospitals. I was back in the ER on Saturday for vomiting... I had the precautionary head CT scan to make sure the good 'ol head clot wasn't acting up...looked good so I was sent home...back in the ER on Sunday because now was nauseous and had the worst abdominal pain I've ever had...had CT scan of abdomen...something looked weird... sent to my usual "PNH hospital" via ambulance (hour and a half from my home). And now here I sit... in my "second home". I had another CT scan done of my abdomen here and their were some abnormal results, but unfortunately the doctors dont know whats going on. So... I get to wait. As of yesterday I am not in excruciating pain, so thats good. I do have a headache, but compared to the abdominal pain I was having this headache is nothing. I hadn't eaten since friday due to my nauseousness...then they wouldnt let me eat anything! An hour go they finally told me I could eat... but only for 5 hours then I cant eat again because I get to have an endoscopy tomorrow.(Is swallow a little camera thing so they can check out my small intestines) Im not too excited about this...but apparently they give me some pretty good drugs so I'm there but not really "there". So I just ordered a cheeseburger, a salad, angel food cake, strawberry ice cream, and a sprite. B went to chipotle and got me a burrito for later. :) He's so great. Although I'm glad I'm feeling better...it makes me more annoyed that I have to be here. But I would like to know what caused the pain. They ruled out a clot in the small intestines... which is what they originally thought. But not knowing whats going on, and having the doctors not know whats going on either just makes me irritable. We can fly to the moon but we cant cure cancer (or PNH). Ok.. sorry, Im done ranting.

So I know I was going to try to steer clear of "medical posts" but what can I say?? The only thing that annoys me is that my lovely mother in law has been watching Bubz this whole time. Ugh!! I am grateful for her "help"... but theres just something about having a crazy woman take care of your child that drives you nuts. I know she is a great gradmother and loves him to death. But I guess I'm just still hurt about her view of me. Anyhoo... she's crazy and I shouldnt care.

Take care all... and I'll try not to stay here too long. :)

My apologies...

I was finally released Sunday after 18 days in the hospital. My clot and bleed seem to be stable and so I begged the doctors to release me. I told them that I understood that they were nervous but that I couldn't just stay in the hopsital forever because somethine MIGHT happen. They finally agreed. My headaches are actually starting to lessen so Im taking that as a sign that the clot is either dissolving or more likely the blood in my brain has found a new route of passage. Either is fine with me at this point. So from here we just have alot of follow up appointments. I had a blood test today and strangely enough most of my counts were normal. While I was in the hospital I had what's called an exchange transfusion. I had never had one of these before,they do these alot in patients with sickle cell Im told. I had an IV in each arm, in one arm they were removing my "bad" blood and in the other arm the donor "good" blood was going in. I received a total of 9 units of donor blood. Since having that done my counts have been pretty high, and actually staying pretty high. The procedure itself was pretty tough I about passed out and my blood pressure fell to 78/46... and I was out of it for about 12 hours afterwards... but despite that I felt great afterwards. Next week I'll have another head CT scan. So all in all Im hoping things are gradually getting back to my "normal".

In more important news... Bubba was evaluated and told that he would probably benefit from physical therapy 1 to 2 times a week. I dont know why this makes me sad, but it does. I have NO problem with the fact that he needs therapy and I have already been calling around trying to find the best of the best. But why does it bother me then? I am starting to think it's guilt induced. I was sick so he was born early...etc etc etc. He was born early because of me, because he was born early he ended up having a grade 3 intraventricular hemmorhage with PVL...both of which are linked to possible cerebral palsy diagnosis down the road. In my own mind I feel Bubba is doing great... slow at some things? Sure, but understandably so seeings as he was so early. I just cant seem to get passed the guilt that anything that may be "wrong" with him is ultimately my fault. But I guess I need to get over it because I have an incredible son who just so happens to need a little help in things right now... and at the end of the day theirs nothing wrong with that.

So therapists... how do you pick one? Id love to have one come to the house so that Bubz can be in his home environment, I think that would help him alot. Id also love to know what I can be doing with him on my own. Anyone have any ideas or helpful suggestions. Its a bit like getting a nanny or something. You want to make sure you have the best person for your child.

For over a week now B and I have been talking about how Bubba needs a new car seat already and how we cant believe it. I know the manual says up to 25 lbs and that Bubz is only 19 lbs but he's too big. Then the other day I noticed that their are adjustable holes as to bring the shoulder straps up higher. yeah... we're that new of parents. I felt horrible, no wonder he hates his carseat. Well that wasn't the 1st stupid parent mistake we've made, and I know it wont be the last. Just thought I'd share.

Hope you are all having a glorious week. Leave messages please... I'm trying to expand my blogworld friends but I seem to be failing miserably. Maybe if I stop with the horribly negative "medically" based blogs people would respond. LoL I'll try :)

Update...

Sorry it's been so long. Today was a pretty good day finally pain wise. Thursday night my headaches were ridiculously worse, to the point where I was even vomiting, so they did another scan of my head. Apparently the person who "reads" the scans at night didn't look at my scan very well, because he informed the doctors that the scan remained the same and that there were no changes. When I woke up the next morning there were 6 doctors over my bed asking how I was feeling because the scan last night was since re-read and not only did I have a clot in my head but I now also have a bleed in my head. How can someone be a risk for blood clots also be at risk for bleeds?? Aren't those exact opposites? Oh the joys of PNH. (Paroxysmal Nocturnal Hemoglobinuria) So they got all of their "teams" together and had some meeting about me and decided that at this point the bleed has to be my main concern, and we will worry about the clot down the road. So they have taken me off of the blood thinning medication I have been on for years and are hoping that over the next few days the bleed will be absorbed back into my body leaving me with no damage. After this has happened the doctors know that they need to restart my blood thinning medication, but careful as to not create another bleed. Sorry if this is getting a bit technical. The problem with this whole situation is that there is no textbook answer as to how to deal with it. This is definitely not an everyday occurrence and so the doctors are literally a little stumped have even admitted there lack of knowledge to me. I appreciate this honestly. They are calling other doctors all over the place including my other specialists. I really feel like every precaution is being taken, but it is a bit unnerving feeling like you are the only person this has happened to. (Although I realize I am not) Today marks 9 days in the hospital, and I was told I will probably be here at least another 5 days. I will try to post again when I hear news...but I have been told this is somewhat of a waiting game. And were hoping for a boring game.