today while driving in the car something hit me. don't worry....i'm ok, something didn't hit me hit me. :-) i was listening to mix 93.3 doing there children's miracle network radio-thon for children's mercy hospital. and i'm listening to all the kids and parents tell their stories. then this one mom comes on that i actually know of, her husband went to school with my sister and i've heard of her daughters illness and their family struggle. she starts her story by saying just a few weeks before her daughter got sick she was listening to one of these same radio-thons and thought to herself i can't imagine what it would be like to be one of those moms, seeing your child sick, being completely helpless and having to rely on complete strangers to know what is right for them......and while she's telling this i'm thinking the same thing " i can't imagine what it would like to be one of those moms" and then it hit me.........i am one of those moms

cinco de mayo

hey everyone!!! so here is what's going on now. the cardiologist found nothing alarming with his heart so as a precautionary he put him back on a heart med that was taking about 2 years ago. and then we just keep our fingers crossed that works!!! they rescheduled his surgery for May 5th (cinco de mayo!!!). i took him to the kidney dr this week and his kidney function has gotten worse. he said it could be because of the growth hormone. he adjusted some of his meds and wants his blood tested again this friday. he can't move forward with the transplant until this other surgery is done. so i'll keep wishing and hoping that this heart med works and he can make it thru the surgery this next time. on a good note, owen seems to be happy and for the most part feeling good!!!! he doesn't like taking his new med, he says it taste yucky. every time i get it out he says "not again" :-) i love that little man!!!!

good weekend

we had i great weekend here at the hughes house!!! friday night we all went to natalie's house and made Italian in honor of my dad. saturday night we watched monster vs aliens with the kids...very cute movie!!! and today we all hung out at home in our pj's all day!!! i still haven't heard back from the cardiologist but as soon as i do i will let everyone know what the plan is for owen surgery. he seems to be feeling just fine. and we started the growth hormone back up this weekend after having to get it all straightened out with the pharmacy and insurance. the pictures are from st. patrick's day when we took the kids to disney on ice, we had so much fun!!!

today would've been my dad's 63rd B-day and i've done really good today. i think i'm all cried out from friday :-)

also if you get a chance check out last weeks episode of True Life on MTV called "i need a transplant" it's got a girl from olathe getting a kidney transplant and the donor is her mom. the transplant is at Children's Mercy her kidney doctor is owen's dr too and her moms surgeon is going to be nicks. it's kinda cool to watch and gave us at least an idea of how it will happen.

have a great week
am

:-(

March 19 2009 I lost one of the most important men in my life, My Dad. not a month as gone by i haven't thought i've seen him somewhere, not a week has gone by that i haven't wanted to pick up the phone and call him...speed dial #4, not a day has gone by that i don't wish i could see him with my kids, not an hour has gone by that i haven't thought about him, not a minute has gone by that i don't miss him so bad it hurts, and not a second has gone by that i don't love him more than ever. and here i sit with a whole year gone by knowing i will have to do this many many more times again. that thought is so completely unbelievable and still shocking to me because i don't want to go another year, month, week, day, hour, minute or even second without him........

good news and heart monitors

it's saturday night and we are still trying to recover from wednesday events. i also have a lot more to share since then. thursday nick and i spent the day at st lukes hospital and got the great news that nick was for sure going to be the donor. YAY!!!!!! they said he was a unremarkable match and as healthy as can be. while we were there i got a call from the nurse at owen's cardiologist office and they wanted to see owen as soon as possible. so i took him friday morning to see Dr Ardinger. he is the cardiologist who has been following owen since he was born. he was completely puzzled by what was going on but not surprised given his history. they did an ekg and echo-cardigram which both result were same as always, no changes. the only thing left for him to try was owen wearing a heart monitor for 24hrs. that way he could see if this is something that owens heart may do on a regular basis but owen is to young to know that something is going on that he needs to tell us. owen wore the heart monitor from 10:30am fri to 10:30am sat. he even had to wear it in his sleep. he did so good, he is such a trooper. it had a clock on it and he kept saying "i'm the time keeper". he was ready for it to come off when it was time though, he also kept saying "how much longer do i have" i take the monitor back to hospital monday and the dr said he should have a plan by friday.

i do need to mention what a great sister i have. liv would have been staying at natalie's house this weekend if owen had the surgery and even though he didn't she still said it was okay for her to stay friday night. and she completely spoiled her. took out to eat 3 times, to see Alice in Wonderland 3D, and got her some new clothes and shoes. my kids and adaira (chelsea's daughter) are so lucky to have her. she is the best aunt ever!!!

here is a funny thing owen said. his uncle domo asked him if he liked not having the surgery and he said "yep, i still have kidneys".....he is so stinkin' smart!!!!

so, here's what happened.....

So, today started out just like i thought it would. nick and i scared and nervous, owen upset because he couldn't have his waffle and water for breakfast. we got to the hospital at 9 am, get checked in, aunt nat nat joins us, talked to all the dr.s and said our goodbye and got hugs n kisses. i have to mention how incredibly brave owen was, he looked very nervous but he let the nurse carry him away and didn't cry one bit. so then we are waiting in the surgery waiting room for them to call down and let us know when the surgery has started so we can go get something to eat, it's about 12 at this point and nick and i hadn't ate anything yet to be fair to owen. :-) we finally get a call and they say "owen is fine but dr. gatti (the surgeon) is going to come down to talk to you" so he and the anesthesiologist tell us that they have to cancel the surgery because every time they put owen under his heart instantly starts racing. when they wake him up it goes back to normal. they tried two times, then called his heart dr. he says hes not sure why it would do this he hasn't had any issues with his heart for a couple years. so they try it one more time and it does it again. so now we have an appt. with the heart dr on april 9th to come up with a plan to get him thru these surgeries. and then we'll reschedule and do it all over again :-/ what a strange emotional roller coaster ride of a day.....so glad we are at home tonite and the day is almost over!!!!

two quotes from today: 1st from a dr after reading owens medical history "wow, owen looks so much better in person then he does on paper" and next same dr asked owen who fixes his cool hair and he said "jill does".....for those of you that don't know that's his girlfriend/hair stylist at the salon. it was so sweet of him to say but she cuts it, i styled it today and i got no credit....he really does love jill!!!

thanks for all the prayers and good thoughts today everyone.

Am

10:30am....owen -1 kidney

today was a pretty emotionally draining day from the get go. i had to battle it out with the pharmacy over owen's new growth hormones. they sent me the wrong thing and want me to pay another $45 co-pay for them to send me the right one......so not fair!!!! then the nurse at the kidney center told me that owen's kidney levels had gotten worse. which means nothing for the surgery tomorrow, it just means that we are that much closer to "the swap". and we had to take alivia and noah to nick's parents and had to say good bye to them for at least 4 days. while i know that they will be just fine, i sure am going to miss them. Owen has to be at the hospital at 9am with the surgery scheduled for 10:30am. i will try to update as soon as possible tomorrow. luv you all and thanks for the encouragement and prayers. please keep it up!!

Am

surgery #16 for owen is quickly aproaching. just 3 days away!!! with each day that passes the knot in my stomach gets tighter and tighter. i just don't think that i'm ready to have my little man taken away from me and then brought back on a hospital bed with tubes everywhere. that is how i saw him for the first 4 mos. of his life and for the life of me i can't make myself remember what it felt like to see him that way. i must have been numb to it. but i think that the numbness has totally wore off and now i'm completely scared. scared of the what ifs, the unknowns and the stupid crazy thoughts in my head that i could never say aloud but mostly i'm scared of seeing him scared. ........tear drops are everywhere.......i love my owen more and more everyday and way more then i ever thought i could. and he tells me that he loves me at least 10 times a day and i never want that to go away.

please keep him in your thoughts and prayers this week.

luv always-Amber