Sleepy Day/First Bleed

Sleepy Baby!


Today's post is more of an update on Jaime because I haven't really posted much specifically about him this weekend.
Mr. Jaime spent just about the entire day sleeping. He was satting well, but breathing harder. I think yesterday and Friday night completely wiped him out, poor guy! He's really only been awake for his bottles...which by the way, his intake lately has significantly increased! Having said that, tomorrow Jaime sees Dr. Hellerstein for his 2 wk. weigh-in...we're really hoping that his weight has increased and that he grew a little, too. Being with him 24/7, it's really hard for us to tell for sure, but to me he looks longer, he still looks so stinking skinny, this Thursday, he'll be 20 weeks old! That is soooo hard to believe!

Jaime, unfortunately has another appointment after Dr. Hellerstein's tomorrow. He must go to Rainbow Babies and Children Hospital for an IV. Here's a little background...Friday, the social worker, from the county's early intervention program was here. When evaluating Jaime, she noticed a large bump on his left thigh and inquired about it. I told her it was from his immunizations...then she asked when they were. All of the days seem to mesh together for me and we talk to drs. all of the time (either in Cincy of Cleveland), so I didn't realize, we were going on 2 weeks post immunizations until that moment. After Rhonda left, I immediately called Jan at RB&C's Hemophilia Treatment Center (HTC). Jaime hasn't been seen there...YET, so she said to "watch it" and let Dr. Hellerstein make a decision about it on Monday. Well, yesterday at the walk, Jan wanted to look at the bump. There is not a single mark on the exterior of his thigh, however...once she looked at it and felt it, she said that Jaime did indeed have a muscle bleed in his left thigh and that he needed to be treated. Typically, a bleed is immediately treated, however, since Jaime has not been seen at the HTC in Cleveland, it would have been a bit complicated to take him to Rainbow's ER to treat the bleed that day. Jan decided to have us come at noon tomorrow to see Dr. Ahuja and become an established patient. This way, Jaime's future bleeds (God-willing this will be kept to a minimum), will be treated quickly.
Jaime does not seem to be in pain from the bleed...at least from what we can tell. Jaime is a skinny-mini, so when I say that the bleed is about the size of a half dollar, it's pretty significant. Jan is the last person to give Factor unnecessarily and really was trying to avoid having to do so, but she is really worried about Jaime. So, that's where we'll be. I don't know if they will treat him just once or leave the IV in and treat him over the course of a few days. I know that when Jared has a bleed, this is the case, but Jaime might be different...I don't know. I'll keep you all updated on his condition. Just for the record...this has nothing to do with his CDH, it's all due to his hemophilia.

Now, back to Dr. Hellerstein for a minute...she called me on Friday afternoon to let me know Jaime's lab results...they were "greatly improved" and she was very "pleased." His sodium was up and stabilizing...in the past it has been significantly low. For those of you who know the numbers...his H & H was 11.9 and 35....previously they were 8 and 26. His potassium was 4.9 and his CBC was normal, as was his renal function test. So, on paper, Jaime looks good. I did mention the thigh bump to her and she said she'd check it on Monday, but wasn't too surprised by it.

So, that's about all. Tom and I spent the day doing laundry as it was a cool, damp day here in Northeast Ohio. Much different from our "sweaty" walk yesterday. Jared was "bored" all day because he couldn't go outside. We did read some books that we got from the walk yesterday. They were really cute, all about boys with hemophilia and their mommy's giving them Factor at home. Totally age appropriate for him. He also did his homework.
I took 2 funny photos today...in the first pic, I caught Jaime "reading" Car and Driver while sitting on Tom's lap. The other is of Jared just after he sat up from laying back in the tub. I thought the bubbles on his head looked too funny not to capture, so I ran and got my camera. Enjoy!