Silly Hemophilia

I could honestly go on and on about the "drama" with Jaime's feeds today, but I'll just give you a briefing. As we all know, Jaime hasn't been consistent with tolerating his feeds, so today we were trying to come up with a good, solid home plan that will allow Jaime to gain and grow while tolerating the feeds. We still haven't come up with the "perfect" plan, but we're getting close. Today, Jaime drank anywhere from 30mls to 110mls, yep, he actually drank a WHOLE feed. Mostly he stuck between 2 and 3 ounces, a bit better than the last few days. He had a few dirty diapers and some obvious reflux issues, but overall did well with tolerating them.
So, the goal today was to come up with a plan for home, as I mentioned above....in the midst of working on this plan, hematology called Patsy. They put a monkey wrench in our whole plan...they are requiring that Jaime go home on Factor to be given every other day. This would NOT be a problem because that's how often Jared gets it, but the difference is, Jaime is 7 months old and Jared is 6 years old. I can start an IV on Jared a few times a week, however, I can't be starting IV's 3 times a week on Jaime. So, having said that Jaime will have to come home with some sort of IV access. The "every other day" plan will be long term, so we are trying to figure out if Jaime should get a surgical IV placed or just keep his picc line in for now. Either way, I could administer the Factor through it like I do Jared, but I would not be able to care for the actual line myself, that would have to be done by a home nurse. Turns out that our lovey plan to get discharged on Saturday will now need to be postponed until all of this is sorted out. I never dreamed that Jaime would come home on Factor like Jared, but the problem is that Jaime is not maintaining a good Factor VIII level for some reason. He is getting Factor levels drawn daily, today's level was 13%. Now, this is a "normal" level for a hemophiliac (a "normal" non-hemophiliac would be anywhere from 80% up), but with administering daily Factor, the thought is this number should be much higher. In theory it should be, but this is my child, I believe Jared is the same way, we just can't manage to do anything by the book! That's why I love my boys so much, they are sooooo unique! :)
OK, so the bottom line is I will be having 2 kids on 3 doses of Factor a week, Jared dosed by me and Jaime dosed by a nurse! I'm sure Anthem will LOVE us-Tom still says that they (meaning Anthem) should PAY US not to have any more children....not that we will be, but still, it's kind of a funny thought and would be cheaper than covering my boys! Hemophilia is the single most expensive disease to maintain, as it needs to be maintained over a lifetime. Just to put things in perspective, according to my Anthem Explanation of Benefits, one dose of Factor is roughly $8,000....so if that's truly the case, the boys will be getting $48,000 of Factor a week, $192,000 a month just to maintain their condition...crazy! I guess the sad part is, none of this has anything to do with CDH, this is in addition to the CDH issues. Jaime receiving prophylactic factor probably would have happened at some point, I just didn't think it would be so soon. For the record, Jaime is the only documented CDH hemophiliac, let alone having right-sided CDH which is extremely rare (1-2% of all CDH cases) in itself, pretty impressive, huh? (Poor guy!)
OK, enough of that...I'll let you know how all of this ends up unfolding...let's move on to bath time! Kim, Jaime's primary nurse, was on again tonight...last night we talked about taking Jaime off of the monitors to put him in the bathroom sink for a bath. OK, so we really wanted to just hose him down and give him a "good" bath. So, that's what we did tonight. It was hilarious, Jaime was unsure of it at first...OK, he completely HATED it! Then, he started to enjoy it. I really liked seeing him without monitors attached to him, he's so "portable" that way! I think Kim and I had the more fun than Jaime, especially when we took him out of the tub and wrapped him in a towel on the counter! He screamed his cold little head off. We quickly got him warmed up again! I took some funny pictures that are in the mini slide show below!
Well, I'm off...I want to try to get to bed early tonight (early, ha, it's already 1:15 A.M.). Jared and Tom are coming to visit tomorrow! Sadly enough they won't be taking us home, nor will Jared be able to visit Jaime, but it will be great to see them just the same. I have some fun things planned for Jared's 24hr. trip to Cincy!