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