Saturday, August 20, 2011

9 days later...

    And we're still in the hospital. Alexanders' surgery went well, and the new incision line looks even neater and tidier than the last one! Unfortunately we're still here since he's sprung another leak. Maybe he'll become a plumber someday, fix his own leaks. Ha! I'm funny! Not so much? You'll have to forgive me, I've been in the hospital a lot lately. I know others have been here longer, but man. I don't get out much.

    Blood tests indicated that Alex had some inflammation and elevated white blood cell counts, so that indicated some infection, which Dr. W was able to find and clean up when he went in for surgery, right along his suture line internally. Not unheard of, and as the Dr. liked to say, it's not a step backwards, it's just a hiccup. The cultures that they took and grew in the lab indicated two different organisms were present, one was an e-coli (not surprising considering where the surgical site is) and the other was a ubiquitous skin bacteria, so they put him on two different iv antibiotics. Yay, another head iv! Good lord, how I hate IV's. I hate them on me, I hate them on him, I hate them in general. They obviously have their benefits, and he really needed those antibiotics to get in there and do their job, but they suck.

    Every time he gets a new one, in a different spot, I leave the room and let Charles take care of it. Call me chicken if you'd like, but I can't stand watching someone (however good and sweet they are, and they all are here) shave a bald spot on his already patchy head, poke and prod him, and stick another needle in him while he's screaming. Or tie off his tiny little arm in an effort to get it in his hand, or his foot. Now, to be honest, he's screaming because they're holding him down and not cuddling him, not because they're really hurting him. But I can't watch it. I can't watch when they put one in me either. There's just nothing I can do for him. Then he's tethered to a beeping machine that keeps sounding off alarms, tubes that twist and kink, and don't get me started on the constant vigilance required to keep little fingers from finding a loop in that tubing and pulling it out all on his own. He's very hard to maneuver and cuddle with all the cables as well.

   That being said, he's been off the iv for two days now! which makes my life sooooo much easier. It would only be easier if they'd send us home! Ha! Anyone? No? Okay.

Thursday, August 11, 2011

Home again, then back again, jiggity jig.


It was great to get home, but Sunday evening we notice that Alexanders incision had started to leak a little bit, so back to the hospital we went, to the QEH this time. It was fine, and not unexpected, but man, it was really the last thing I wanted to see. I'm so glad that Charles was there when I changed that diaper. I had a small freak out, but he kept me under control, and we got shit together and off we went. They took us in VERY quickly (it will never happen again, and they had a full ER waiting room, pretty sure everyone there hated us) they admitted us, then they restarted his antibiotics. We stayed for two days in the Pediatrics ward, and they sent us over to IWK again in the ambulance. My first ambulance ride ever, but thankfully not very eventful, just long and more precautionary than anything else. 

So! That's where we are now, we're scheduled for more surgery today to see if the Doctor can fix the leak, and hopefully it will all go as well as the first one. If all goes well, hopefully we'll be heading home again in a week after recovery and more antibiotics. It's been a really long two weeks so far, but we're still doing well all things considered, and keeping spirits up. The staff here is wonderful and so good to us.

Saturday, August 6, 2011

Progress, and out of the NICU!

The day after he was born, less than 24 hrs later, Alexander had his surgery as scheduled after having an MRI, and both went well! His Doctors were all very pleased with him. The myelomeningocele repair surgery went as best as can be hoped for, and we then spent some time in the NICU at the IWK for all his antibiotics and follow ups, then we transitioned into pediatrics care for observation and to let us get the chance to learn how to care for him and get settled with him. 
Chillin in his NICU bassinet. This sweet ride had wheels, a cabinet underneath to store all his diaper accouterments in, and the bed actually slid over to open up space to change diapers on the top beneath it. Unfortunately, it doesn't go home with him.
 His range of motion is really great. Feet and legs are kicking, he has almost normal muscle tone (we might have some work on the lower calve muscles down the road, whatev) and he wiggles his toes all on his own. We're so lucky, I don't know how it's possible, but we're so pleased and thanking our lucky stars; there's no signs of hydrocephalus, he's going to the bathroom just fine on his own (and often), and they sent us home last Friday.


Because it's cold, all men require toques. His is just a little soft. And little. And white. You know how I feel about white.