Hematology Woes

Another busy week of appointments. He was weighed at baby group last Wednesday and was 17 lbs, which equaled NO weight gain for a week. He did start crawling though, so it wasn't a huge worry. We saw Dr. Robertson on March 22nd and he was doing pretty good. He gained a few ounces. We see her again in 2 weeks.

Wednesday the 24th we went out to Children's Hospital to see the hematology clinic. Parker's blood has been coming back with a high red blood cell count. Not alarmingly high, but higher than a normal baby. * Note: This blood stuff at this point has nothing to do with his MCAD... that's fine * I was pretty upset too because they had not gathered together his blood tests from Lion's Gate Hospital (3 blood tests since birth) so they only had half of the test to look at and come up with the cause for it...which at this point is "unknown".
I am pretty frustrated with Children's Hospital these days. I really really try and not take it for granted. Children's hospital is a half hour drive and he gets the best care in the province. But on the other hand I feel like they could really try and communicate better. The metabolic clinic NEVER updates the next appointment with other specialists, so when I meet these new doctors they want Parker's detailed history since birth and all his blood work and other medical paper work that I do not have. Like my Pediatrician, who did not receive Parker's info until AFTER my appointment with her. She got it in the mail.... the MAIL!!!! It's 2010!!!! E-mail it!!! Fax it!!!! Better yet, give it to me so I can take it to all of his appointments. What am I supposed to do, come in and take notes?! All this medical stuff they are saying to me so overwhelming I don't even know where to start and I wouldn't understand it if I wrote it down myself. I don't understand any of it at all as it is!!

Wow, that got out of control.
Anyways..
We got Parker weighed, measured, temperature and blood pressure taken. Then a specialist came in and gave him is usual poking and prodding work up. Testing his reflexes and checking everything out. I can't remember her name but she had a crazy accent and I couldn't understand half of what she said. She explained how she didn't have all of Parker's paper work but his red blood cell count has slowly gotten higher since he was born. It could be cause by a bunch of things ranging from dehydration (the orginal assumption) or not getting enough oxygen (smoking, carbon monoxide poising, asthma) to Polycythemia and congenital heart disease. None of which sounded good to me. But it could be nothing and will be fine and level it's self out in a few months.
Dr. Woo I think his name was, sat down with us and explain that his high cell count could be caused by a number of things... again. We heard the same thing twice. And then he explained that because he didn't know what is causing it we are going to watch him. There a a few tests we can do, but most are very expensive and very painful, such as bone marrow tests. So we are going to "wait it out". Then he sent us to get ALL of our blood work done and we were sent home. We come back again in 3 months for more blood work, and then we see Dr.Woo in 6 months. Unless the next blood tests come back even worse.

I am trying not to worry because it could be nothing. But when I go in there and I hear this and a bunch of scary sounding disease and told to go home and "wait it out" it makes me want to throw up. So now I am waiting, sweating and practically hyperventilating every time I think about it. So I think I am done thinking for the night.