the surgery

It seemed like forever while we waited for the surgery to be over. They give you a pager to text you with updates and we were glued to it, but I've since found that the pager is just a feel good thing.  I'm not sure I'll even want one next time.  They just fluff you up and tell you the real stuff later, at least that was our experience.  I guess maybe for the first time I was being treated like a normal patient's parent and I didn't know how to take it. Just give it to me straight. I've been told all this time that my boy has a death sentence hanging over him, so there isn't much you could say that I haven't heard.  But don't sugar coat it then dump it on me later.  That's what they did though.  See, my boy's heart stopped during surgery, if the rumors are correct, three times to the point where they had to do CPR. but no mention of complications on any of those texts. My jaw dropped and my eye wanted to wheal up but what was the point. He was OK now and doing fine. You know I wonder how much worse I would have been if they had said everything was fine but then come to tell me my boy had passed away?   Scary but he was fine.  My mom's reaction was overly dramatic and upset Vu and I even more.  I had to be real short to get her to stop and even then we had to get away from any negativity.  Our boy was good.  That's all we could think about.

Old stuff to catch you up on

I am really bad at story telling and I guess my blog will be the same way.  All the important points are hit, but not necessarily in the correct order. Since I stopped blogging for a while to focus on Vance, I have to go back and fill in the gaps, but I am trying to stay on top of things more this time so there are current events mixed in. Sorry but maybe it will make for more interesting reading. Soooo 2 weeks after Dr. Zyblewski (our Cardiologist) said Vance would be ok with surgery we got the call surgery in 4 days! OMg, my head was just buzzing. How do I plan for major surgery of my child in 4 days. How do I plan for my two other children and what do I tell them? Well, like everything else I procrastinate!  I did call my mom who said she'd be down asap and help me with the girls not only watching them but trying to keep their mind off of it too. So that was a relief. As far as everything else goes I was just in a daze.  I did as much around the house as I could manage, while keeping appointments at the same time. We had a long day the day before at the hospital in "same day" observation. After coming home and having dinner, my mom and her friend Michelle arrived and I spent the rest of the night til 1 am (surgery check-in 5:45am) figuring out what to pack and what to leave. The girls have school the next day but Gillian didn't want us to leave without her seeing and kissing Vance good bye.  She does love that boy so now! She got up at 4 and by the time we were leaving she was so wiped out. Mom said she was sure she was exhausted in school that day since she fell asleep in the car on the way to the bus stop a block away!

Heart Catheter Tomorrow (5/26/2010)

Anxiety is going to take over me tonight.  Vance had a normal cardio appointment scheduled for today.  Since I was downtown I planned on seeing a few other parents who were there;  A couple who just had a new HLHS baby boy yesterday and another whose baby girl has had 5 surgeries and has been struggling since Vance was in the hospital with her back in March.  We were doing the routine checks: height, weight, BP and O2 saturations.  His O2 was down. But still not out of the range they said was normal, but still 10% less than the last few times. I didn't think too much of it. After a while you start to tune out stuff like that unless it's really major.  We did his ECHO which to me looked better than the last time, less fluid.  So I figured we were in for good news. Set up the cath in a few weeks and then on to the Glen in a few months.  Well sometimes you get what you ask for but it's not exactly what you expected.  They said he is out growing his bands, which were always mean to be a temporary fix. But I could tell it wasn't something they were really wanting to happen so soon. I had felt all this time that the cath was just a means to an end, just a way to get to the next step, but for some reason I can't get over the way it's just so final.  Either they say they can do it or they say the can't.  Basically if he will live or die....so hard.

Like the energizer bunny....this boy keeps going and going and going

So when Vance turned two months old I figured it was time to stop treating everyday like his last.  We had to stop by passing things he needed like immunizations, well baby visits, etc. Just after his 2 month check up he had a high fever 103. I did what I would normally do, I called the pediatrician's office.  When they said it could be up to two hours before I got a call back because it was the weekend, I decided to call hospice.  The nurse on call said I could just give him Tylonol.  She sounded like she didn't know what to do, floundering when telling me what dosage to give him, so I wasn't very comfortable with her advise. Plus I didn't want to spend the weekend with a sick baby getting sicker until we could see someone on Monday.  Finally the Dr's office called and said we should get him to an ER babies that young shouldn't be having a fever like that. AHHH!!! I knew it! Stupid nurse! We took him to MUSC as usual.  4 hours later..yawn....we found out he had a UTI, which is not something 2 1/2 month olds normally get. It meant there was potentially an issue with his kidneys and/or bladder. More tests. But it burned me up even more with hospice. They were just going to let him get sicker.  On monday his regular hospice nurse called and said there was an issue with us taking him to the ER.  Hospice is not done that way. And if I took him back to the cardiologist there would be an EVEN bigger issue with that. Well it didn't take much for me to see that hospice was not in our best interest. They were not concerned about helping us care for Vance.  They were just collecting money while waiting for him to die!!  And I wasn't about to just sit by and let him die from neglect.  His heart giving out was one thing but anything else that was within my control to take care of was going to be taken care of. DAMN THESE PEOPLE ALWAYS DISCOUNTING MY CHILD.  I know he isn't suppose to live but WHY can't we treat him like he still is until he isn't anymore!