not so quick update

hey all....just a quick update. i think that i last posted thursday afternoon. shortly after that owen had to have a pic line put in his arm because he kept blowing IV lines. that took about 3 hours of our late after noon. they had to give owen some vaulm several times to calm him down and once again hold him tight when he is already in so much pain. right after that nick was discharged and went home with his parents to their house to rest for a few days.....nothing like having your mama take care of you (and your 20 month old son at the same time). natalie arrived for a visit in the mist of all this just as they were whisking owen away for a ultrasound to check the placement of the new line. owen was exhausted at this point, it was about 8:30pm and that little man started lifting his booty on and off the table. when we asked him what he was doing he said "exercising". lol....that kid hasnt exercised a day in his whole life, it was too funny!!!! he was very crabby that night when we finally got back to his room. natalie said he sounds that a cranky 80 year old man. all i can do is laugh at it or i think i would go crazy. :-) on the way back to owens room i saw nicks empty room, i didn't realize how emotional i would get at not seeing nick in there. makes me teary eyed just thinking about it. natalie stayed and hung out with us for awhile so my mind did have to focus on that for too long. first thing friday morning owen had to go to radiology again to have the new pic line checked and better placed. it didnt take to long, then we were back upstairs eating breakfast. we just rested the rest of the day and hung out with some visitors. owen is doing really great overall. today is day five and they removed the catheter (which was going in the port he has in his belly button) this morning so now he only has to be cathed every 3 hours. which really means he can move around better. they are still trying to get meds and fluids right. but he really is doing amazing and moving right along. nick on the other hand is still really sore. yesterday he had a good day but today he is not. he is back up here tonight staying with me and owen. they both got the biggest smiles on their faces when they saw each other. i'm so happy to get to be with him again. all and doctors and nurses keep telling us that the donors always have a harder time recovering pain wise because they come from completely healthy while and other was sick to begin with. i thought that this was going to be a quick update but oh well, one more thing.......everyone here keeps asking owen about halloween, whats going to be, whats he want to do and so on? he tells every single one of them "i already had halloween" yay :-)

love all the love
am

pics and IVs

owen with his breakfast in the PICU
me holding owen his first time out of bed.....he doesn't want anymore pictures taken so he was closing his eyes on purpose (please ignore my greasey hair, it is no longer)

nick seeing owen for the 1st time

owen still tired of taking pics so he still has his eyes closed

owen started having a bad night right around midnight when the pic-line in his neck started leaking every where. so after lots of painful trouble shooting the decided they would just have to stop using it and put in two more standard IVs to take on the loads that the pic-line was doing. this was now about 1-1:30am when me plus 3 nurses were holding him down to try to get these IVs in. it was absolutely awful to wittness this. he was already in so much pain from the surgery and for at least a few hours prior to this his pain meds were leaking out. then we had to hold him down tight. the only sights they could find that were still good were in his hands which left them all taped and boarded only being able to wiggle his finger tips. after he was released from our grips he looked at both hands and said "how am i going to eat". after wiping my tears i said "don't worry baby, i'll feed you". he instantly fell asleep and neither of us woke up till 10:30am when nick came strolling in for a visit.

my mom brought livi up to visit with us today(she was brought her everyday). both of them were smiling the whole time playing with eachother. the nurse was able to take one of the IVs out of owen hand while she was here and owen wanted livi to hug him while she did it....it was so cute!!!!

new room

hello......at about 9pm owen finally was moved up to a regular room very close to nicks room. yay!!!! owen has been doing great today. still has some pain, to be excepted. his incision starts under his ribs and goes all the down into his diaper. he was able to start eating real foods today. that made him so happy to get to eat breakfast. i also got to hold him sitting in a chair. which brought back lots of memories that happened right there in that very same PICU 5years ago. it was so bitter sweet to be back in there, the best thing about this time is that when i say i love you he can actually say it back. :-) which also means he can tell me how much pain he is in which completely breaks heart, but i would much rathar have it this way over him being in pain and not being able to say anything....again bitter sweet. nick has also been doing great today. he has been moving around much more. he started eating a little bit. they think that he should be discharged tomorrow. as soon as owen was moved to his floor he walked on over to his room. he hadn't seen him since before surgery monday. he was ready and so was owen, he'd been asking about him all day. i finally got to take a shower about an hour ago. i'd been in the same clothes since monday :-/ no one complained but i'm sure i was stinkie. so far the only fear i had that came true was me being a stinkie mess. (knock on wood) but now that owen is in a room with a full bathroom the issue is resolved. yay for me!!!! tomorrow i will get some of the pics up from today.

love you all always
am

the swap

my alarm clock went off at 5:30am at Children's Mercy on the morning of October 25, 2010. i would say that i got a good solid 4 1/2 hours of sleep. owen was still asleep so i took all of personal belonging down to nicks room because they could stay there due to nick would go back there after his surgery. on the way into his room the nurses asked me to wake him up and have get change into his gown and get his wedding ring from him. as i was slipping his wedding ring onto my finger it really really hit that he was going to be having surgery too.

my sisters, my mom, nick's mom, liv and adaira all arrived to our rooms around 6:15am. the nurses came to take us the OR around 7am. owen was in a pretty silly mood. he was able to get plenty of sleep the night before. nick on the other hand said he didn't sleep very well.

nick, owen and i were led into the OR recovery room while the rest of the gang were taken to the surgery waiting room which wasn't quite open yet. jill met everybody else down there. in the OR nick and i had to sign all the consent forms and hear all the potential risks and complications again from the surgeons. at about 7:30-7:45am they told me it us time for me to go. while i did cry on my walk down to elevator and into the surgery waiting room, i do have to say i was a lot more calm and at peace then i thought i might be. don't get me wrong, walking out of that room leaving those two boys in there has to be one of hardest thing i've ever done but something came over me. i was so scared of being in that waiting room without nick but having all my wonderful loving family there before i was in there and staying with me the whole time made it so easy. i also owe a thank you to all the friends that stopped by, it helped break up the long hours. rachel, the transplant coordinator, would come down to give us updates every few hours. at 9am we heard that they were still working on getting to nicks kidney and the had just made the first incision on owen. at 11am nicks kidney was out and so was owens other kidney. she said that owen kidney was the size of a chicken nugget and nicks was the size of a chicken breast. nicks kidney was perfectly healthy. it was crazy to think that this nurse just saw with her own eyes my husband and sons kidneys and then came down to talk to me about it. at 12pm they said nick was in recovery and they were placing owens new kidney. at 1pm nick was coming out of recovery and heading back to his room. nick's mom and i went back with him. the first thing he said to me was "tell the nurse these pain meds aren't working" then when right back to sleep :-) nick's mom stayed with nick for awhile while went back to the surgery waiting room to wait for owen. at about 3pm we got the call that owen surgery was over and the surgeons would be down. the surgeons were so happy with how thing went. it couldn't have gone better. nick's kidney started working almost instantly. owen was already off the breathing tube. they were able to put the kidney a little to the side and not right up front. there should be no bulge. they were also able to completely close him up. it was all great news from them :-) at 5:30 i finally got to go into the PICU and see my owen. i was more than ready...it had been 10 hours.

nick has been in more pain then he thought that he might be. he finally got out of bed late today. they took out his catheter so he needed to use the restroom and he sat up in a chair for about an hour. he hasn't ate anything yet but i do believe that he has been drinking some sprite. i have only been able to go up to see him a few times. owen doesn't want to be left alone and he is still in the PICU which is 3 floors down. i've had some several visitor today :-) some of them were able to sit with owen while i ran to check on nick and grab a bite to eat.

owen has been doing amazingly well. i think he has some super self-healing powers. first things he said to me were "i missed you" and "what are we doing after this". both comments confirmed he was still my same amazing owen :-) he is still having pain that they are manging with pain meds. the biggest thing that they have to manage right now are his fluids and blood pressure. nicks kidney is used to working and pumping fluid to a much bigger body. so they have to give owen body extra fluid to keep up with it. they are putting in as much fluid as it is giving out, which is about 250ml every 30min. all that fluid dilutes his blood and lowers his blood pressure which they want to keep high so for the time being he is on a med for that. nicks kidney will eventually adapt to owens volume size but they want to gradually give it time to do so, so they don't kill it. today he's been sleeping off and on. about every 20 min. he told me he was hungry and wanted breakfast but they would only let him have ice chips, which he said were not chips and wanted nothing to do with them. he was saying some pretty funny things last night after he kicked off all his blankets (picture above) "do i have school next week?" "i sting!!!" and "after breakfast tomorrow can i take a nap?"

this was my dinner date tonite :-) julie and glenn (nick's parents) brought him up to see me and sat with owen while i had dinner with noah and visited nick.

nick was feeling a little bit better and was so happy to see noah :-)

when i got back to owen he was all smiles because he had learned that he was going to get eat some real food. he couldn't take that smile off his face. he got some orange jello and a few sips of chocolate milk. he is now peacefully sleeping. i'm going to try to sneak out of here to go take a shower in nick's room. i'm still in the clothes i was wearing yesterday, hoodie jacket and all...:-/

this is my chair. the feet do come up but i learn today that it should completely recline but is broken. owen should get to go to a regular room tomorrow morning and i thought i would never say this but i can't wait to get to sleep on that plastic covered parent bed. i promise i won't complain about it for at least a few days ;-)

thanks again for all the love

am

categories

we are all checked in at children's mercy. from this point on everything in our life will fall into 2 categories-before the swap and after the swap. tomorrow will be the beginning of our life after the swap. this is going to be life changing for us. today while i still felt sick to my stomach and have had a pain in my chest i also feel kinda numb, like it's not real. i'm just going thru the motions. i've shed i few tear today but not near as many as you might think.

nick and owen are on the same floor but on the complete opposite ends of the hall. owen thinks its pretty cool that his dad has his own room at his hospital.
owen also thinks it's pretty cool that he can see "his" CCVI tower from his room window. CCVI is right the front of the KCPT building on 31st and main. you'd be surprise at all the places in the kc metro you can see that big red tower and owen is always pointing out by telling me "i can see my CCVI tower"

owen's last dinner. owen has always been on a low-phosphorus low-potassium and low-sodium diet, after the swap he should have no diet restrictions at all.....yippee!!!!! let the boy eats what he wants :-)

nick's last dinner. he would of loved to have a steak but at the kids hospital he had to settle for a cheeseburger and ice cream. i asked him "how did you like your happy meal?"

nick and owen both with their IVs in. nick did good and by good i mean he didn't pass out but he did lose all his color. owen on the other hand screamed the whole time like always. there was 8 of us in his room at the time and while he is the only one freaking out, the rest of us were completely silent, he was screaming at us "everybody clam down". it took everything in me not to laugh and just keep holding him tight so they could get the IV in.

i love this little face more than anything (well just the same as liv, noah and nick but you know what i mean) i don't know what i would do if i didn't get to see that face every day and get to hear his i love you-s. because of owen's kidneys he has felt sick everyday of his life. despite being sick he is one of the coolest kids to be around, you just know something amazing is going to come out of his mouth any second. the part of him that doesn't feel good cause some pretty frustrating parts about him. but the amazing parts always out weigh the frustrating parts. i know this kid inside and out. which is something that scares me about swap. will he change into something i don't recognize? i've only known him sick :-( will he still say amazing things? will he still tell me loves me 10 times a day? is it really "in spite" of him being sick that makes him amazing? i guess he will always be categorized as a sick kid but hopefully after that swap he will be able to feel as amazing as he makes everyone around him feel. only time will answer all my questions......

i'm going to try to get some sleep here tonite but i'm not to hopeful. sleep is something i'm not that good at and i've said it before....the sleeping options at this hospital are awful for the parents :-/ nick has been in his room for a couple hours so i'm sure he's asleep by now. owen has been in and out of sleep for a little while. he is having a tummy ache due to a med they gave him. my poor baby

always

am

halloween and real fears

thanks Ellis family for the yummy and cute Halloween cookies!!!! perfect beginning for the best "foe" Halloween day for owen. there is even a Frankenstein.....his favorite!!!!!

owen's trick or treat on delaware street was such a blast!!! all my pictures don't do it's justice as to how many people were really there to support my little man. i think if i had to guess 150+...so amazing!!!! i couldn't never thank everyone who helped enough. my sister Natalie really put the whole thing together with lots of help from the salon gang, chelsea, tessa and my mom. plus all the family and friends that had trick or treat stations and brought yummy treats and courtney who dj-ed. all the friends and family that brought their kids so owen really thought it was halloween. thank you thank you thank you...forever thank you. i love you all always for loving my owen like you do. owen had such a good time. i think it was a little over whelming for him and he got real tired of me taking his picture but he was cutest vampire so i couldn't stop :-) we will cherish that night forever!!! my hopes are that we can do it every year as a fundraiser for CCVI and the national kidney foundation.

now that all the halloween fun is over the reality of what is about to happen has really sunk in to me and nick. we both have had sick to our tummy feelings all day. at times i've felt like there is a huge weight on my chest and i can hardly breathe. nick and i have had some hard and serious talks today about our fears. my biggest fears of course are for owen and nicks safety, then i fear that liv will throw her temper tantrums for our family that is taking care of her like she has been doing for us lately, i also fear that whenever the next time is that i get to see noah after tomorrow that he will hate me for leaving him. i also fear the surgery waiting room.....this will be owen's 17th surgery, and i have never sat in the surgery waiting room without nick :-( just the thought of it is making me cry right now so i'm not so sure how i'll do monday. we've been packing all day....liv for 2 places, noah for 2 places and owen, nick and i for the hospital.....for what could be 3-5weeks. thats breathe taking in itself. i think i have one bag full of all my PINK pants, i fear that i will run out of clothes and be a stinky mess. i fear i gain 100lbs of all this stress when i wish i could lose 100lbs from all this stress ;-) i fear i won't see the light at the end of this tunnel.......right now i'm going to take this time to describe what we've been told about how all this is going to go- tomorrow owen and nick have to check in to children's mercy between 2:30-3pm. they will each have their own rooms. nick gets to be at children's mercy, donors are the only adult patients. nicks surgeon is not from children's mercy he is from st lukes, dr moore, who we've met. owen will have to get some kind of fusion tomorrow night so he doesn't get mono because some test came back positive on nick and negative on owen. (sorry, i really don't know how to explain that better) and if any other numbers are off they will have time to fix them then. around 6:45am on monday they will start getting them ready to go to the OR. at 7:30 they will start surgery on nick. owen will go the the operating to be prepped and have several iv lines placed and a pic-line placed in his neck. owens actual surgery won't start till about an hour or so after nicks. nicks surgery should take about 2-3hrs. with owen they will be removing his last kidney before places nicks in. his surgery will last about 6-8hrs. the nurse told me we should get to see owen again around diner time :-( owen will go to ICU and will remain there until he can be weened off the breathing machine, which could take 1-2 days. they don't except it but said not to be surprised if he comes out with his belly not stitched up yet. he will get very swollen from all the fluids and because of the size of nick kidney in ratio to the size of owen. we will probably be able to see a bulge on owen where nicks kidney is until he grows into it. nick won't be able to go see owen until he is out of ICU :-( nick should only have to be inpatient for 2-3 days while owen will be there for about 3-5weeks.

once again thank you all for the perfect Halloween. i will do my best to keep everyone updated over the next few weeks. and thanks for all the well wishes, good thoughts and prayers :-) keep them coming

always

am

1 week away

we had a great last full weekend. we got some more much needed cleaning around the house done. we know we will be so overwhelmed when we get to bring owen home after the swap so we want the house to be as clean as possible. sometime during last week owen asked if he could stay the night at his nannies house before his surgery. so nick and i thought that it would give us the perfect opportunity to spend time with just livi. saturday night the boys stayed with nicks parents while we took livi on a "date".

we took her to walk and shop around the plaza.
we had dinner at The Melting Pot. it is one of me & nicks favorites. livi wasn't to crazy about the main course but she loved the cheese and chocolate fondue. we had a great time!!!!

then we went miniature golfing at cool crest. the weather was perfect. livi thought it was cool that her mommy and daddy had gone on real dates there before we were married.

sunday morning we had brunch at V's with nick's family. it was definitely a weekend full of yummy food.

today owen and liv didn't go to school because liv and i had dentist appointments and owen had an appointment with his cardiologist. owen goes to karate on mondays, so tonite he went to his last one for a few months. his two helpers in the class are brother and sister and they just adore owen (who doesn't, right?). today they gave him a pumpkin that they decorated and wrote well wishes on, it was so sweet!!!!

so this is it.....one week from today owen will get one of nicks kidneys. all day i have had a big knot in my stomach and i pain my chest. nick and i have been so short with each other but we both know that it is just stress and aren't taking it to heart. i know it is only going to get worse, we just have to make it thru this week. wish me luck

much better.....

today was a much better day. nick took the day off to relax. he said he just felt hung over today. i think it's his mind trying to prepare him for how crumby he his really going to be feeling here soon. so him being home meant he got to do all my friday run-arounds with me, i love when we have the whole day together. first we had a parents teacher conference with owens teacher, he is doing has good has can be expected right now. we are all excited to see what this new kidney will do to owens attitude and behavior. right now he doesn't even realize how sick he is because he has always been this way, so after the swap he should really start to feel good and healthy. i've been asked a lot lately what owen understands or feels about the upcoming swap. i do think he has some understanding about what is going to happen. he knows what surgery is for the most part....does he understand what a kidney is, no-what 5 year old would....does he know how serious and complicated this surgery is, not really. so here is what he does know, his dad is going to give him "his" kidney back, he is going to stay the night at the doctors after the surgery, and this is the latest comment i heard this week while we where pulling into children's mercy parking lot "mom i'm going to miss you when i have my surgery" made me cry and smile at the same time. i said to him "i will miss you too but dont worry i'll be there when you go to sleep and when you wake up" :-) the pictures below will show you what we did with rest of our day.

this is what the hughes boys really look like in the tub with short hair!!!!