Drugs!

I have always taken pride in the fact that I have never even once tried recreation drugs of any kind, heck not even a cigarette. I do not even like to take prescription medication. I didn't even have pain meds during my c-section with Jaime...yes, that is just how much I am against drugs, especially pain medication. So, when it comes to Jaime needing Morphine and Versed (kind of used routinely for these little ones), I kind of cringe. Now that he's off of them, I'm thrilled...that is until he's showing obvious signs of withdrawal from them. Can you imagine, a little one like this actually having such a thing? Who would have ever imagined in their wildest dreams that your baby would be addicted to certain medications? It's just not normal....well, it's not normal in the "real" world, but it's sooooo incredibly common in "CDH" world. It's just another sad part to this crazy condition.

Jaime withdrawing from drugs....

Aside from signs of withdrawal, the drs. are still trying to figure out if Jaime is having any pain and if he's tolerating his feeds. I think it's safe to say that he's not really having issues with his stomach, but he's still having several diarrhea diapers a day. He's even lost a pretty significant amount of weight in just the last few days. He is getting fed through the NG upping the volume by 5mls every 6 hours. He's currently up to 20 mls an hr. He is also aloud to take 3 bottles a day...today he drank all 3 like a champ...wanting more with each one.
He did spend the day, like the last 3 crying and fussing. He's so upset that I had to put him down several times because he was literally squirming out of my arms. It's so weird to see him like this, especially since Jaime always is a happy, go lucky baby and never cries at home unless he was hungry. Poor thing had to get Morphine and Ativan just to "calm" him down.

Jaime after drugs for withdrawal.

Having said that...I felt like I really needed a break from the 4 walls at the hospital and all of the screaming and crying, so I went out with Bev and Jeanie. We went to Willie's, it's a sports bar down here. UC was playing, so we watched the game up there. I believe they won, too. It was soooooo GREAT to see the girls and get out of the hospital! (Thank you both, sooooo much!) It's good to know your limits and when it's time to take a break! I was ready and really needed one. It's hard being the only person here, I don't have Tom or Jared distracting me or switching with me like I did in the summertime. The last few days have been exceptionally hard because Jaime has not been himself at all. Last night was the earliest dinner I ate and that wasn't until 11:00 P.M. I honestly don't think about "time" when I'm there, I just do what I feel I need to do....next thing I know it's the middle of the night. I have, however started coming in a bit later...more like between 10 and 11 A.M. because I'm there so late (usually until 1:00 A.M. or so), I figured something had to give, so I don't hurry to get there in the morning anymore. I call in the middle of the night and when I wake up to check on Jaime, then I take my time getting ready...unless he's not so good, then I hurry there.
Today, I got a call that Jaime had a bloody nose this morning. So unusual for a "normal" baby, even the hematologist said it's highly unusual for his age. Well, not only did it happen once, he actually ended up with 4 nose bleeds today (Titi had one this morning, too...guess it was a sympathy bleed?!?). He ended up with 3 doses of Factor and a visit from the attending hematologist, Dr. Mullins, too. Crazy hemophilia coming in to play to complicate things even further! UGH!

Back home, the boys are missing me...probably as much as I miss them. My mom's still there helping out with Jared when she can. (She's been pretty busy with my Grandma who was just transferred to a nursing home rehab facility today). From what I hear, Jared's not being all that nice to her. Kind of stinks because you know that probably 90% of that behavior is simply because I'm not there. He called me like 7 times today just to talk (on the plus side, he got a haircut!) This situation is very stressful for all of us, I think it's especially hard on Tom with having to work full time, while playing mom and dad to Jared and being so far away from Jaime and I. I can't even imagine what he's feeling like, I just know how I'm feeling and know that I don't like my family so broken up. The funny thing is, the only thing that's truly standing between Tom, Jared and I is Titi, I mean Columbus. (Get it, Columbus is directly between Cleveland and Cincinnati?!?) OK, I know, bad joke it was my attempt at seeing humor in this unique situation.



Looks like it's 2:30 A.M. again, so it's time to wrap things up! Please say a few prayers for Jared, as this situation seems to be taking a toll on him...and for Jaime to recover fast so that we can get back home to Jared and be a family of 4 again! Thanks!!!!