busy, busy...merry christmas!!!

merry christmas everyone!!! it has been crazy busy around here and time is just flying by. the salon has been really busy the last few weeks. that is always a good thing. :-) my only complaint about that is that i miss nick and the kids. i've been so jealous that he gets to stay home all day long with the boys that i can hardly stand it. but i'm trying to not get too upset because i know i will have a lot to complain about when nick goes back to work in two weeks and my schedule will be 100 times more complicated. :-/ owen is doing really good. we are now doing daily bladder irrigation on him which are super easy because of the bladder access thru his belly button. we are doing these in an attempt to get rid of a bacteria called sudamoundous. he has had this bacteria in his urine off and on for as long as i can remember. the drs thought it was coming from his sick kidneys. so they were a little shocked when they saw it in his urine again now that both his kidneys are gone. now they believe that it has been coming from his bladder all along. since antibiotics can cause such bad diarrhea on him we are trying the bladder irrigations. so far so good. nick is doing good too. he is having a few small side affects but nothing that his drs are too worried about.
a few weekends ago nick and i took owen and liv on a date night. we went to dinner and to see the movie tangled. which was a great movie. we went to the theatre in blue springs and while there nick and i had a surreal and amazing moment. that theatre is where nick and i had some of our first dates over 16 years ago. it was so amazing to sit in the same place with two of our kids giggling and having a great time. and for nick and i to love each other even more than we back then. i truly felt our relationship come full circle that night. can't wait till noah is old enough to go with us.
today nick was asking livi to list 3 things that she is grateful for. when she was done owen walked over and said "i'm grateful for you daddy".............aren't we all :-)

Merry Christmas
Am

we are still here...6 weeks

hi all....i don't know where all my time has gone. we are 6 weeks out from the swap and doing great. we still have a nurse coming to the house twice a week for labs. still changing meds here and there. owen did end up having a virus that was causing the diarrhea and it seems to be getting better now that he is on a antibiotic for it. his appetite is way better now but his taste buds are totally different. he has been craving sweets but can't really have any because one of the meds he is on makes his body retain sugar. so it's been a struggle to get him to want healthier alternatives now. before he would take one nibble of sweets then turn it down or choose fruit which he doesn't seem to want now. it's just all so weird and different and hard to say no to him. beside all that he really is doing good.

we had a great thanksgiving. natalie and i hit up lots of stores on black friday. we've got the house ready for christmas. i think i'm done shopping for the kids but every day owen adds something to his list. he has been staring at the toy-r-us ad for two days. today i actually heard him yell at liv not to touch it because she would rip it. :-) it's really funny to hear him say because nick and i call him "owen the ripper" because he rips all paper.

it's late and i'm tired, so sorry this is a short post. i just wanted all my loving and loyal followers to know that we are still here. i will get some pics up later this week. have a great week!!

so thankful

happy thanksgiving!!!! i just wanted to write a little post about all that i'm thankful for. i'm so thankful that we are all home together. i'm thankful for the doctors and nurses that take care of my owen. i'm thankful that children's mercy is here in kansas city and we don't have to drive hours to get there. i'm thankful for all my amazing family. i'm thankful for all my amazing friends. i'm thankful for all my amazing hair spray cafe family. i'm thankful for all the random i love you-s i get at least 10 times a day from owen. i'm thankful for all the random leg hugs i get from noah. i'm thankful for how excited livi gets when i come home. i'm thankful that my dad has been watching over our family from heaven especially this last month even though i would still rather have him here. i'm thankful that noah loves trying to do everything his big brother does. i'm thankful that owen is here to get so annoyed and angry with noah. i'm thankful owen has his mickey button back. i'm thankful for my mom and all 3 of my sisters. i'm thankful for trevor and ben. i'm thankful for my in-laws. i'm thankful for our friday pizza and movie night. i'm thankful for CCVI and all owen's friends there. i'm so thankful for nick and his kidney's. i'm thankful for all the love i get. and i'm thankful i'm here to be thankful.

it's back

it's been 4weeks!!!! we are home from owen's feeding tube surgery. we came home saturday evening. owen was so great, of course :-) his biggest complaint afterwards was that he was so hungry. he finally got to eat something around 7pm and was much happier then. getting fluid in him and giving meds are so easy now. no more forcing and crying. owen has almost been excited to have it back, like he missed it. he has said several times "my mickey button is back!!!!!" they are still adjusting his meds and right now the diarrhea is back :-( but over all is doing really good......i started this post last night, this is how far i got when i heard owen screaming in his room at about 11:30pm. he was having awful diarrhea and his poor little booty was hurting him. so he sat on his potty seat leaned over on his bed sleeping while i laid/slept on his bed till 3am. it got even worse this morning before it finally got better this afternoon. it is doing much better this evening. we went to the kidney center today and the dr is running some tests to make sure he didn't get a virus before he changes or adds more meds. he also has lost some weight (which is no surprise to me after seeing how much came out of him) but they don't like to see that so they will be watching him even closer then they were before. today i have been exhausted, sad and frustrated. it's hard to really put why into words it's just a lot of moments, thoughts, passing, comments and events that i can't seam to get out of my head. i am so ready for thanksgiving and some black friday retail therapy. owen has been getting so excited for x-mas and actually asked me in his sweet little melt your heart voice "do you think santa will bring me lots of toys?" my new favorite answers is "who can say no to the boy in the mask" :-)

here are some pics from our last hospital stay......

silly boy

tired of me taking pictures and really wanting to eat

ZZZZzzzzzzzzzz................

he loves the puppet made for him at Trick or Treat on Delaware Street

i need to get him one of these for x-mas.....does anybody know where to buy these at?????

at home using his feeding tube for the first overnight feed

nick, liv and noah were all great this last week. nick still says everyday he feels more back to normal than the day before. every morning liv asks to see nicks belly so she can check how good it looks....it's so sweet.

tomorrow i'm going to try to be rested, happy and hopeful.....it is thanksgiving eve!!!! i'm going to attempt to make red velvet cupcakes from scratch with the kids. should be messy but fun :-D

surgery #18 will be tomorrow. the dr said that it's a little bit complicated due to being so soon after the transplant but still thinks it will be a breeze. if everything goes well we should be back home saturday night :-) owen, just like always, is being such a brave boy and asking all his typical questions.....you'll be right in the hallway? i'm going to be asleep so i won't feel anything? do we get to stay the night at my doctor? i'm so at peace and ready to get this done and just know that he be just fine. the only part i'm worried about is that we don't have to be at the hospital till 1pm tomorrow, the surgery should be around 2:30, but owen cant eat after 3am or have liquids after 11am tomorrow. it is going to be so hard to not let him eat anything all morning. plus i've always not ate myself when he cant out of sympathy.....thats no food till 3pm.....yikes!!!! we are going to be one crabby pair tomorrow. let's hope that time just flies.

familiar change

with our 3rd week behind us we are slowly getting into the groove of things. when i say slowly, i mean s.l.o.w.l.y.....it still feels very weird and different around here. i'm not worrying about it too much because its all going to change again after this week. but it will be a familiar and easier change. owen is going to have a feeding tube put back in. nick and i couldn't be more ready to have this done. right now we are having to force every sip he takes. which is so hard for us to beleive because before the swap it was the exact opposite....extreme opposite!!!! we were forcing him to STOP drinking so much. here is how the dr explained whats going on to us: before owen was always borderline dehydrated because of his poor kidney function (it functioned at 15-10%) so he made up for it by drinking non-stop. now he has 100% kidney function and doesn't feel the need to drink. but because nick's kidney is use to getting a much bigger volume of fluid due to the size of nick compared to the size of owen. owen has to take in extra fluid to keep up with nicks kidney so there is no permanent damage. so putting this feeding tube back in will make it so we're not fighting with him to drink all day every day and we will have peace of mind that he's getting all his fluids. plus it will also make it so much easier to give him the meds. which are down to 11 daily meds from 13....yippee!!! owen had a feeding tube for about 3 1/2 years so this is nothing new to us. for the most part owen always did really well with it so i'm more than happy to welcome it back into our lives. the only thing i'm not so happy about is that this will another surgery for owen #18 and another hospital stay. it should be happening on friday with a 1-2 night stay. on wednesday we go meet with the surgeon (same one that did the kidney swap) and get all the details. besides all that owen is doing really great. his diarrhea is much better. and i'm actually seeing signs of maybe getting him potty trained :-) owen has even gotten used to the mask he has to wear when out or around lots of people. he is such a amazing and brave little man. nick is doing great, really only feels it when he is doing too much. liv and noah are both doing wonderful as well this last week. noah still loves doing everything owen is doing. he follows him all around. owen doesn't like having noah around so much. he locks his bedroom door a lot to keep him out or constantly screams "no noah" if he's not locked himself in his room. it's a real treat to be around :-/

noah hanging out with owen while he goes potty

noah wanted a mask too while we were at wal-mart.....so sweet. owen's eyes are closed on purpose again.

i just thought that this tree looked amazing last week, it made me smile every time i came home. now all the leaves are on the ground :-(....i wish fall lasted longer!!

i want to thank every one that brought us yummy meals and gifts this last week. it really helped make the week a little easier. we feel so loved. also a big thank you to nick's aunt janet for helping with noah. as always thank you to everyone else for all the good thoughts, words, prayers, love and hopes. we wouldn't be able to make without all our amazing family and friends!!!!!

2 weeks from the swap

my weekend full of relaxing, re-charging, re-focusing and so on.....not so much. it wasn't all bad, we were all together. we had a great pizza movie night friday. toy story 3 and how to train your dragon are both so good. nick is feeling so good :-) still gets really sore when he does to much but has been off the pain meds for a few days now. noah is getting used to him not being able to pick him up. owen has had his ups and downs. sometimes he looks really swollen, then it goes away. he still doesn't want to drink anything. and he still has bad diarrhea. he spent most of the weekend sitting on his potty. it finally seems to be a little bit better today. saturday at about 11pm we got a call from a transplant doctor about owen blood sugar saying it was really high and we need to go back to the hospital sunday morning to re-do labs. so in the five days we've been home, we've gone back to the hospital 3 times. how could i find a routine with a schedule like that :-/ his labs did come back normal...thank goodness. we go back to the kidney center tomorrow (4 times in six days) i hope i feel better about him being home after that. i would like to say that owen has lots of moments of not feeling good these last 5 days but he also has had many were he seems to feel great and act like the old owen i know. like in the car....he sings every song, songs i didn't even know he knew. makes me smile from ear to ear on those drives back to the hospital. and i actually had to say to him "no, i don't think you should jump off the sofa right now" the new cath and meds schedule still seems difficult and crazy. the new home health care nurse came today and that was weird. i haven't had a health care provider come to the house in 2 years and i forgot how time consuming and a little invading it can be. but i'm still optimistic that it will get better and easier :-)

sitting on his potty looking at this wonderful snack/gift basket from our great friends

fell asleep on his potty watching tv

he can't take baths yet till his belly completely heals but he's too weak to stand up for very long so he sits on his potty seat in the shower. nick came up with a new name for him this weekend "crouching potty, sitting shower"


again and always....thank you to every one for your good thoughts, prayers, love, gifts, meals and help!!

home!!!!

owen's shirt he wore home says "my dad is #1"...owen is still tired of me taking pictures and will only agree to do them if he can close his eyes
we are home!!!!! we got home wednesday around 7pm. i have such mixed feelings about it :-( for those that don't know me that well, let me tell you that i don't like change in my daily routine. actually i HATE it. don't get me wrong, i'm happy to not be in the hospital and to be with liv & noah too. but in no way was i prepared for all the "medical maintenance" owen would require nor did i realize how little help nick would have to be. we have been home a little over 24hrs and i'm completely spent emotionally, physically and mentally....mostly emotionally. i feel more over whelmed then when we brought owen home from the hospital the first time 5 years ago. i didn't think that was possible. i don't know what i thought it was going to like after the swap. maybe i had so much fear of him making it thru the swap that i didn't put much focus on after or it's that we weren't suppose to be home yet....they told us 3-5weeks. we were out in 1 1/2!!!! so i think i just realized owen is Amazing (i already knew that part) he healed in half the time they thought he would, i on the other hand...not so much...i needed that extra time. whatever it is, it's going to take everything in me to get thru this. pre-swap my daily routine with owen went like this....enema, cath, meds, meds with meals, cath and meds/shots before bed and doctors appointments and labs monthly. i know there was more to it then that but it seemed easy and normal. now it's all crazy and new.....he has 13 meds (there was six before) they have to be taken twice a day twelve hours apart at the exact same time every day. for the next 2 months a home health care nurse will come to the house to get his labs, then i will have to take him to the hospital twice a week for the following 4 months. i have to cath him every 3 hours and he has to wear an overnight cath/bag every night. he also has to get at least 1500 mls of fluid daily, which before would have never been a problem for him but now i have to force every sip :-/ plus all the hand washing, germ spreading prevention and infection worries. we were already back at CMH this morning and will go back tomorrow for about 5 hours for him to get another mono fusion. we also have to go to nicks doctor tomorrow because he is having some type of allergic reaction, hives and blisters all over his belly, looks awful and painful......poor guy. he is really trying his hardest to help me but he still has some pain and isn't suppose to lift anything over 10lbs. it also doesn't help that today owen has had the worst diarrhea ever that has had me changing his diaper every 5 minutes or him sitting on his potty seat hours at a time and caused the worst diaper rash.....my poor little man :-( they are going to be looking more into that tomorrow. we have a new post transplant coordinator who checks in with us daily. i know that all of this will eventually become my daily routine and someday maybe i will say it's easy.
the pharmacy in my kitchen
moments like these make all the crazy ones a little bit easier......finally with all my babies, i missed noah and livi so much
owen (eyes still closed) tonite with his overnight cath/bag attached to his leg. he was so sad about having to wear it.....he cried, then i cried :-(

my plan for this weekend is to relax, refocus, re-charge, re-organize, and re-work my routine. wish me luck!!!

one week

halloween dinner

it's been one week since the swap my boys are both doing great!!!! nick feels better and better everyday. he is here again hanging with me and owen tonight. they both just cant wipe the smile off their faces when they see each other. owen is still do amazing. so much better then they thought he would. today they had to take him back down to radiology and put him under sedation to have a port-a-cath put in. it is a little valve/button type thing that put under his skin on his chest connected to a vein that they will be able to use to draw his blood for labs when he goes home. he will be getting labs 3 times a week for the first month, then 2 times a week for the next 6 months, then once week, then down to once a month forever. this will make it so they dont have to look for a vein every time. sounds like a good idea and i'm sure i'll get used to it but today looking at this button thing in his chest was giving me the heebie geebies. :-/ so the word in the halls here is that if they can get owen off his IV fluids tomorrow and he continues to do well we could be going home wednesday. so we are keeping our fingers crossed that happens. :-)

standing up for the first time

in a wheelchair going down to radiology

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