It's not personal

Or thats what I tell myself.  He doesn't want to see anyone.  He wouldn't even let me take a picture for the little kids kids since he didn't want to see them.  As you can tell I took one while he snooker for a second.  He's almost more irritable today.  I'm now in the lobby.  I just had to step out.  It's been a couple days since he had his retainer in and his teeth moved the last time he skipped just one night.  I insisted he wear it for a bit today since there's no longer a choking risk and then he can wear it again tonight.  He was pretty ticked I wasn't and couldn't give in.  I just needed to step out and figured I could wait for Brian and the kids instead.

Day 2 New valve

I shouldn't really say new valve since he didn't have a pulmonary valve, but it is new to him.  He was leaking so bad where it was supposed to be that his right ventricle enlarged so much that it had caused a lower valve to stretch out and begin leaking.  The surgeon said once the bovine valve was in the ventricle reduced some and the lower valve stopped leaking. 

He didn't sleep real great past night and they told him if he didn't start taking deeper breaths he'll further his risk for pneumonia.  His chest tube is still causing quite a bit of pain despite oxycodone, so that's making it harder for him to really breath.  Once he stops draining so much blood and fluid they'll remove the chest tube.  Probably not for a day or two.  He's not a happy camper right now and doesn't want to see anyone.  I told them everyone will have to respect that as long as he's in pain and doesn't allow himself to slip into any sort of depression.  This reaction is quite common after this painful of surgery from what I've read.  We think step down tomorrow, but I'm going off a doped up 17 year olds memory for that.  The rest of the family is going home today.  I think that will be better for them and they can settle in before school on Monday.

He did get his Cath and 2 lines out this morning, so that's an improvement.

One of the longest days ever!

We got to the hospital at 5am.  They took him to put him out by 7 and had him opened by 9.  They said he scar tissue from the first heart surgery wasn't too bad so they didn't have any problems getting to his heart.  They had the valve in and he was off bypass by 1pm.  He wasn't happy with the breathing tube so they sedated him a little more and we finally saw him around 4 pm.  Not quite as long as last time, but close.

He was in quite a bit of pain and as soon as he was even slightly coming out he began signing to the nurse what hurt and that he needed his tube suctioned.  Thank goodness she had had some ASL in college.  We got in there and she looked at us funny and asked if he knew sign.  We told her that was his foreign language in high school.  She was amazed he was lucid enough to do that.  What they didn't catch he signed for his iPod and typed out short words.  They're really amazed by how strong he is and once again he amazes his mother.

Hour by hour, then day by day or will get better.  This is what I kept telling him when he was first upset.  I wanted to cry for him so bad, but that would have made things harder for him.  I pray things will just get more and more awesome for him.

Not what I was expecting from today

I was thinking I'd go to work and then tonight I would pack for the hospital for the 7 of us. God laughs and laughs at my plans.  Way too often sometimes.

Brian left at 6am to bring Chase to football as he always does.  I got up a few minutes later and took my shower and started getting ready.  Knowing I needed to leave before 7 so I could get to work early enough to finish making up my time for Jaemin's speech.  Thankfully, I worked a lot extra last week, so I don't feel too bad and it was only a few more minutes.  But, I make things up to the minutes so I have no guilt.  Anyways, I went to get Jaemin to brush his teeth like I always do and noticed he felt a little warm.  He'd had a cough and runny nose for the past few days, so I was a little more concerned.  His temp was barely over 100 and normally I would just make sure he was comfortable and send him to daycare because it seemed more like a sinus infection which he gets A LOT.

I decided we couldn't risk him picking up anything extra at daycare and we needed to get him seen by the doctor to make sure there was nothing I was missing to expose Cole before his surgery.  The hospital wanted the diagnosis so they could decide if it was still safe to do Cole's surgery and we needed to be able to plan what we were going to do with everyone for the weekend.  We were concerned with him being sick enough to get Cole sick or to get  other kids at the hospital sick.  The doctor decided it could be a sinus infection, but diagnosed him with bronchitis due to the cough.  He said it was more or less just a diagnosis he could put down since there wasn't much other than cold like symptoms, which was fine with me.  He said if he'd had the flu it would be much worse and he was vaccinated, so it should be okay.  The hospital said we could proceed with surgery and they'll check Cole out thoroughly tomorrow to make sure.

Jaemin's temp would bounce between 98 and 100.5 mostly, but did hit 101 once.  I never had to medicate him, it just went down on it's own.  The doctor did put him on an antibiotic just in case it was bacterial and we could knock it out before the day of surgery.  It's been gone all night this evening, but fevers have a tendency of coming back in waking hours.  We finally came up with a plan.  Unless he gets worse, we're all still going.  We'll keep him at the hotel instead of letting him go to the hospital if he still has any fever.  We'll keep him in our room instead of with the other kids at the hotel.  Then, if he's still sick the day of surgery all of the kids can stay at the hotel with their grandmas.  I felt better once we had the decision and it seemed like it would work for everyone.

Ready for this to be over.  Cole says he's not nervous.  He said Friday morning, he'll be nervous.

The Big Day is Almost Here

We're definitely on the final countdown to H-Day.  I've started packing things I'm afraid of forgetting (i.e. the boys' extra set of retainers).  Tomorrow night will be time to pack the bottoms for everyone after we've done laundry.  Then, Thursday morning I can wash my towels so I can come home to clean towels, wash the darks and fold them so that's done for Brian when he comes home.

We've been discussing with the Principal and teachers, in more depth, the plans for the next month for Cole.  I've been wrapping what I can up at work and can remote check my email to delete as much as possible and the rest will have to wait.  Cole spent the weekend with friends since it will be the last for a bit while we try to let him recover and try to keep him from catching colds, etc.  It will be extremely important to keep his heart extra healthy for awhile since infections can more easily go to the heart once you have anything foreign attached.  The valve can actually create an extra risk.  It will all be good though.

We've got things more or less figured out.  Where who will be when and how things will get done or what won't get done until I get Cole home from the hospital.  The deal with Cole has been to focus on grades the last quarter, no working and just trying to take care of himself.  I'm trying not to think about the cost of the hotel, the food and the hospital bill.  Just get through Friday.  And hopefully, the next couple of weeks will go by quickly so that he can just get back to normal and hopefully feel really great after this.  My plan at the moment is to make sure he goes back to his cardiologist one more time prior to returning to wrestling in the fall to make absolutely sure his heart is healthy and good enough to handle it all.

One more day.  Finish packing.  Finish any emails to schools.  Get there.  Have fun, just the 7 of us Thursday night.  Try to forget about it for one night.  Get through Friday.  That's all I have.

Daughter's of the American Revolution

Okay, I thought this would be interesting.  It's neat that a past can go so deep in your family.  I did my ancestry for a project for Chelsi and found that my dad's side goes back to Charlemagne and that I can get into DAR  if I chose to.  Chelsi's gifted teacher didn't think they would exclude her because of being an adoptee, so she said I should pursue so the kids would have the possibility of the scholarships, etc., that go with.  

I emailed our local chapter because they were having a how-to meeting soon.  I asked if there would be any issue with the adoptions and they said "I’m sorry adopted children would not be able to become DAR members through you, unless there is a direct blood relationship.  Thank you for your interest in the DAR"

How sad is that?!

I responded "There is no interest.  I am sad that in today's society any organization built on the ideals that the US is built on does not support adoption.  My children are mine.  I am a direct descendant and therefore, my daughters are just as much entitled as my biological sons.  This is THEIR history as much as mine and it is their children's history.  I would never want to be a part of something so stuck in history that they can't see a future."

I just can't get over how sad this is.  I posted to our adoption group and one momma had a great point.  What about all of the aunt/uncles, grandparents, etc. who raised children as their own.  They may have been blood, but could have been blood from another side, not truly making them allowable by DAR.  Or what about all of the secret adoptions where the child never even knew.  They weren't related by blood, but they raised them as blood.  They qualify for DAR, but my kids don't just because we're forthcoming and it states they were born in Korea on their birth certificates with our names as their parents.  

Guess what DAR.  You are a sad, sad organization, well behind the times and they are my kids, we are their parents and our pasts and ancestors are theirs too.  They don't have access to their blood ancestors and we have no problems sharing ours and our lives with our 5 kids!

Why do people have to let you down?

We're supposed to trust the nurse coordinator at the hospital.  We're supposed to trust the social worker at the hospital.  They offered to pay for a night at a hotel so we could come to meet the surgeon the day before Cole's heart surgery and then be there by 6 am the next morning.  I asked if they could go ahead and get 3 nights and we'd just have to pay for them if we could so the kids could see him before Brian took them back home.  They say sure, it's all fine, we'll take care of things.  My punishment for trying, for once, to be patient and let other do ended up in a night of crying for me.

I decided, tonight, I would call the hotel she mentioned and see if the reservations were made.  They were.  For one night.  And the other 2 nights they were now solidly booked.  On top of that they hospital assured me they understood the size of our family and would get 2 rooms if they had to.  I asked the hotel what they booked as and it was for 2 adults and 2 kids and we were not going to be allowed to stay even the one night.  Well, don't you think that's something we would need to know before that night?  Don't you think it would have been a good idea to have some attention to detail and listen.  Don't you think it would have been a good idea to keep in touch with the family to have let us know what was going on.  Not this hospital.  Terrible.  I just burst into tears.  The stress is starting to set in and I'm starting to get nervous and this did NOT help anything.

I spent 2 hours trying to get things sorted out and find something.  I don't even know the city very well, but at this point, we were just trying to find SOMETHING we could afford that was reasonable and would actually allow our family size without paying $250/night.  Ummm...yeah, we wouldn't stay if that were the case.  I finally found a Hampton Inn that's a 20 minute drive, but that's better than 2+ hours and having to leave at 3:30 am with 5 kids.  They are allowing us to cram in one room and they gave us an $80/night rate.  It's doable.  It even had good reviews on Expedia.  At one point, I was struggling so hard to find anything, I thought I was calling the hotel's 800 number and it turned out it was Expedia.  They did try to help though.  As I was talking to her she said I sounded like I had been crying and that's all it took for me to burst out in tears again.

At least we finally have somewhere to stay.  I was wondering what we were going to do for a little while.  I called so many places and we either couldn't afford them or they said we were too big, even for just one night.  Now, if we can just find it.  I've Mapquested it out and I'm a little confused, so hopefully we do okay.  Once we find it, we'll be fine driving back and forth to the hospital, it's just the first time.  When the directions say U turn first thing, I get a little nervous.

I just hope they don't treat everyone like this and it won't be my choice the next time he needs another surgery, but I hope he won't choose the adult hospital affiliated with this Children's hospital after how we've been treated over the past 2 weeks.  They should be more organized for families than what they are.....BY FAR.