hello home....how much i missed you so!!!! we came home yesterday (sunday) afternoon. sorry for the late post. nick got home with noah shortly before we did. we got home, unpacked, crashed and then went to a wonderful cookout with our wonderful neighbors!!! owen seems to be feeling good. nick had to work today :-( so i took my mom to lunch with the boys and then we took flowers to my dads grave. we had a great time together. when nick got home we cooked out with my mom. then finally liv came home, she stayed at the lake one more night with nick's parents, i missed her so much....i could hardly stand it. i hadn't seen her since i put her on the bus thursday morning. so glad this weekend is over and we are ALL at home!!! i take owen to the kidney doctor tomorrow and nick and i are hoping we get some answers, at the very least a time frame.
this last wendesday was livi's kindergarten graduation!!!! i can't believe she will be in 1st grade next year. so crazy how fast they grow.

i hope everyone had a great memorial weekend and has a great week ahead of them. i'll let you know if find out anything at the kidney doctor.

about to call it (another) night here at children's mercy, hopefully it is last one for this visit. owen is much better today. the wanted to keep him one more day because they want him to be 24hr fever free and keeping good urine output without iv fluids before he can go home. so far no fevers :-) and the stopped the iv around 7pm so i'm keeping my fingers crossed that goes well too. we aren't real sure what was wrong in the first place, could just have been a little flu bug that with him turns into a bigger bug because of his kidney issues. but while here we did discover other issues. first - yesterday his blood pressure was getting very low so they are taking him off a med that he has been on that is to slow down kidney damage but also lowers your blood pressure. because he is getting close to transplant preserving his blood pressure over the kidney they know will be replaced is more important. second issue-with his weakened kidney function now that he only has one he has become very anemic (low red blood cells). when we go home we are going to have to start epogen injections. which is probably one of the reasons he has been so weak and puny feeling since the surgery.

i am feeling much happier/positive today. thank you so much everyone for all the kind words, encouragement, love, prayers and offers for help. help is something that i have a very hard time asking for and i'm realizing i will need to get better at it during the swap. we had several visitors today and that always make for a good day here, so thank you so much to those that visited.

thanks again
always
Am

no news leaves me with sad news

too much time to think today, due to the fact that we are still at children's mercy, has me feeling sad tonight. owen seems to be a little better today he has good and bad moments. still not sure what is causing this. i saw the doctors this morning and haven't seen them since :-/ nick went to work today and julie (nick's mom) took care of the other two last night and today. we had plans to go to the lake with nick's family this memorial weekend so nick went ahead with liv and Noah to try to keep normal in their life. it is such a hard decision of what's the right thing to do for the rest of the family in times like this. nick wants to be here as much as i do but i can't leave here without owen so i kinda leave him no choice :-( and he's not complaining about it, he gladly steps up to the rule of solely handling the other two, he just tells me he feels guilty leaving us here. tonight i'm feeling so sad and guilty for not being with liv and noah. i realized today that thursday morning i sent livi to school telling her i'd be there when she got off the bus and get her ready for her dress rehearsal at dance. while i'm so grateful that julie can help us in a pinch and i know she tries her best, i heard it she didn't do it right and livi got all upset. it breaks my heart and makes me feel as if me failing with her is the sacrifice i have to make for owen??? what am i to do??? and my sweet baby noah, thats all i can say... :-( and on top of all this, with memorial day approaching, i miss my dad so much. he would be bringing my mom here and sitting with me in nick's absence so that nick wouldn't be feeling so guilty for not being here. we are truly torn right now trying to balance right and wrong for our family. it has me really thinking that i don't know how i will do when time for the swap comes and both of these amazing men in my life are in hospital beds and i'm left to do all the balancing. :-( what will i do then???

:-( not feeling so good

owen is back at children's mercy again. at this time we really aren't sure what is going on. we just know that he doesn't feel good. this morning when a did his cath. i noticed that his urine was darker with a pink/red tint. he was acting normal and ate his breakfast so i sent him to school. when i got to work i emailed the nurse at the kidney center to see if i should be concerned and while waiting for her response i got a call from owens school teacher to let me know that he wasn't feeling good. when i got to him he was sleeping, pale and burning up. the kidney center had me bring him in to see them and get blood work. the blood work showed that his kidney function #s were elevated but stable, so not what is causing this. they decided to admit him so they could run more test and give him iv fluids because he isn't wanting to eat or drink. right now he is peacefully sleeping after 5 tries to get the iv in :-/ hopefully tomorrow we will have some answers.

@ home again

everything went well saturday morning so owen and i were back home by noon. yay!!! he seems to be doing ok. his little legs are slowing getting use to being used :-) and i'm slowing getting use to cath-ing him. owen slept in his own bed for the first time since may 4th, which also meant it was the first time since then that nick and i slept in the same bed. i forgot with all owen's excitement going on to announce that alivia lost her first tooth wednesday. she was so excited!!! and the tooth fairy brought her $5!!!!

owen in the hospital bath tub playing with bath toys and keeping his plastic wrapped iv hand in a boat to keep it dry.

when we got home owen had a surprise package in the mail full of wonderful hand made get well cards from all the kids in his class at CCVI. included in the pack were pictures of kansas city chiefs football players helping his classmates make the cards....how cool is that?!?! a couple of them were signed by them. very nice and generous surprise.....owen loved looking at them!!! thank you so much miss sarah!!!

catheters & shrek

we are here another night at children's mercy. owen is doing good. no crazy pain like yesterday. and here is what dr gatti (his surgeon) thinks happened. owen's bowels got back up from the surgery, pain meds, and him being scared to push because of the tube and pain. the bowels were swelling and pushing on the bladder causing a kink in the catheter so urine couldn't easily get out. urine was sitting in the bladder and going back into his kidney causing an infection and decreasing his kidney function. somehow in all that he got dehydrated?? and all that coming to ahead was causing the intense pain. so today, they were giving him iv fluids and an iv antibiotic for the infection. his kidney function has gotten better. dr gatti came in around 4:30 to remove the catheter and teach me how to re-cath him. which i will have to do at least 3 times a day for as long as its needed...could be always....thur a opening in his belly button. the kidney doctor wanted to keep him here at least one more night to see how he did after the cath was removed and after stopping the iv fluids (which they did around 7pm). also to give the urine culture more time to grow so they can see exactly what type of infection it was. hopefully all is well tomorrow and we can go home. owen is a lot happier with the catheter out and got a good amount of poop out with tonight's enema without the catheter. plus he was able to take a real bath for the first time in 2 1/2 weeks!! they are so good here, they brought him in bath toys. earlier today the transplant coordinator came in to say hi and tell me that owen is on the list for their meeting next week to talk about his transplant now that this last surgery is done with. so hopefully at his next appt in the kidney center on june 1 i may know some kind of time fame. owen and i have just chilled here today watching movie including having a shrek marathon. nick, the best husband ever, was running back and forth getting the other two where they needed to be. thank you so much ruth ann for keeping noah today!!!! tonite nicks parents have liv and noah so nick could spend the rest of the night here with us, i dont know what we would do without them. and thanks everyone else for the prayers and good thoughts.

hospital for the night

what i thought was a start to good day turned sour real fast. owen had been doing great this week. i haven't given him pain meds since at least sunday. nick was off monday thru today to stay home with owen. and tomorrow owen was to go back to the surgeon at children's mercy to have the catheter and stitches removed. so this morning, while owen was eating breakfast he started complaining of his belly hurting him. which i asked him if he was trying to poop because that has been whats caused the most pain for him since the surgery. he kinda kept saying it while still eating, but seemed to be able to handle it. i went to get ready for work. nick said he kept complaining so he brought him upstairs to rest on our bed. just then as i was getting out of the shower he began screaming in pain.....shaking, sweating, hysterical crying/screaming. i'd never seen him in so much pain. i gave him the pain med i had and tried calling his surgeons office. we noticed his urine output was low, so we were thinking the tube was blocked and his bladder was full and that was causing the pain. while waiting for a nurse to call me back nick and i started getting ready to take him to the ER. if nick hadn't of stayed so calm i probably really would have lost it. owen continued to scream the whole ride there and in the er until he completely wore himself out and passed out. after tests and x-ray the discovered that his kidney function has worsened, he has bacteria in his urine, he is dehydrated, his bowels are completely backed up, he has lots of air in his stomach, and i think maybe an infection in his stomach. on the good side everything is fine with his surgery things and catheter. so here we are staying the night at children's mercy. it's just me and owen, nick is at home with the other two kiddos. they think the bowel was causing the pain. (for those that don't know...owen has bowel issue already and i do daily enemas to keep it under control, which i have still been doing after his surgery) i just finished going another one on him about ten minutes ago and it was very painful for him :-( and they to do them 2x a day to try to get him unblocked. on the kidney side....they want to keep retesting/watching for the next 24-36hours to determine what to do next. since we were brought to our room minus doing the enema owen seems ok. he doesn't really look or acting like he is sick. he's still got his little man attitude :-) he said some pretty funny things in the er that i'll try to post later with some pics.

doing good!!!

we had a great weekend here at the hughes household. owen is doing great!!! he has gone two days without pain meds. he is still not moving around to much, mainly because the catheter bag is the same size as him and hard for him to carry alone. since he really is walking much it is so cute when he does, it's like he has new legs. :-) he is still sleeping in bed with me because our bed allows the catheter to hang properly below him and i have to admit i'm loving all the mommy/owen time. he has me hold his hand all night and says the sweetest things to me. i just love him so much!!! he goes back to the doctor friday to have the stitches and catheter removed and then back to the kidney center on the 1st.
nick and i had this big date night planned for this saturday before the surgery was scheduled and got to follow thru with our plans thanks to nicks great parents who were able to come to the house and stay with the kids for us. we went to melting pot for a wonderful dinner and then to sprint center to see Cirque Du Soliel.....it was AMAZING!!! it is the 4th one that i've seen and probably my favorite. we had such a great night. it's funny how you can't wait to have a night out without the kids and then all you do is talk about them and miss them.

i need to say thank you to some great friends for bringing us some yummy meals this week.....thank you so much mary jo and whitney!!!! it was so thoughtful and helpful!!!

oh yeah, i almost forgot. owen is going to get to continue going to CCVI next school year and the school is going to give him scholarships to cover the tuition cost. big sigh of relief.....yippee!!!!!

congrats & sponge baths

this weekend owen missed to celebrations. he really tried to go to the one today. but was just too wore out to make it so i brought him home some cake, which really made him happy!!! Qe and aunt rhonda & david i hope you enjoy the picture!!!!! i do need to say thank you to my great in-laws for taking care of noah and liv this last week and thank you my mom, natalie, chelsea and dom for taking liv with you this weekend to st.louis. you all are the best!!!!

owen walked around the house a little bit for the first time today. he sat at the kitchen table in his high chair for breakfast and colored for bit. then we went upstairs to get his first bath(sponge) since the surgery. doing all that completely wore him out and was hurting his belly quite a bit. it was really making me feel like he should still be in the hospital. i don't feel like this was something i was prepared to take care of on my own. i really didn't have any expectations but i didn't realize how hard it would be for him to move around. it kills me to see him in pain. we don't take him back to the dr till the 21st and until then he has a catheter coming out of his belly button held on be tons of stitches....how could that not cause him pain?!?!? i'm hoping each day gets easier for him, you can see how scared he his to feel the pain.

on the flip side...owen is loving all the mommy attention. he has been sleeping/hanging out in our bed with me. tonight nick is sleeping in owen's bed and owen thought that was the funniest thing that he was sleeping in daddy's bed while daddy's was sleeping in his bed. so i need to mention how great nick is, he is the best!!!!!

happy mother's day to you moms out there....hope you had a good one!!!

always

am

@ home

at about 5:45pm we got to bring our little man back home. he still has quite a bit pain when he moves and can't really sit up on his own. but he seems so much happier here. he goes back to see the surgeon may 21st. so until then he will have a catheter in the new sight. it is basically going in his belly button to his bladder. i will keep him home from school until then for protection of the sight and because the urine collection bag is almost as big as he is. :-) even once he feels better getting around with it is going to be challenging. today they noticed that he still has bacteria in his urine (very common for him) but with the surgery site and now having just one kidney they are going to treat him for again. no biggie, just on antibiotics for awhile.

owen is snug as a bug in a rug hanging out in our bed watching some of his favorite movies. he ate a jb&j sammo, is getting lots of rest and having me make lots of phone calls for him. he's gotta check in with everyone.

thank you always for all the prayers and good thoughts!! we are so grateful for great family and friends. and we are so happy to be home!!!!

always

am

walking around

owen slept good all night long. he was feeling good this morning. ate a good size breakfast, 3 french toast sticks, few bites of hash brown and quite a few peices of his favorite... strawberries!!!

quickly after breakfast he started not feeling so good. he was having some coughing fits and it was really hurting his belly. :-( he took about an hour long nap, which he really must have needed because when he woke up he was ready to get up!!!!

he wanted to get out of bed and walk down to the play room. he did so good. it hurts less for him to stand up then to sit down. and it completely wore him out.

he played down there for about 15min. until he said it was really really hurting him. his teacher from his school CCVI came to visit just in time to see him walking back to his room. he just got done eating a descent size lunch and is now trying to take another nap. dr. said if he keeps feeling good we might be home by dinner.

day 2....crabby boy

today has been an interesting day here with owen. they thought that he might be going home today but he is having a hard time getting comfortable with changing the pain meds to one that he can go home on. he is very very crabby and rightfully so, the only thing i can do is to find it comical. he really has been having me running around here like a nut to try to make him happy. he wants me to do something then 2 seconds later he doesn't want me to and changes his mind again. then he wants something to eat, then he doesn't, then he does and i half to go look in the hall for it and i come back and he's sleeping and he wakes up and makes me do it again. all i can do is laugh at it. today he really hasn't had much of an appetite like they would like him to have and hasn't been drinking near as much water as he normally would but still is getting a good amount of urine out put.

nick's mom brought noah up to see us this morning after she dropped liv off at school. it was so cute when he came in he couldn't stop waving hi to owen. it was so nice to see him, nick and i miss him and liv so much. plus nick's mom really needed to see how owen was doing with her own eyes.

this is a very cute and very thoughtful cookie bouquet owen got for nick's aunt janet, uncle dwight & cousin's derek and megan. the cookie in back says "speedy recovery". thank you very much guys!!! i know when his belly is feeling better he will really enjoy it. (and livi too)

he also got some stuffed animals today. the royals bear is from nick's mom and noah. the soft big monkey came with angela and megan from the salon when they visited. he also got a stuffed cow (not pictured) from my mom, chelsea and adaira. thanks you so much everyone!!!

he probably slept for about 4-5 hours straight this afternoon. while he was sleeping the dr. came and said he would have to stay over night and try to go home again tomorrow. he hasn't really tolerated sitting up to well and needs to be able to walk around before he can leave. at about 7:30pm he woke up and starting acting a little bit more like himself and wanted to sit up and eat. he had a little bit more than 1/2 of banana and about 10 tater tots. he was smiling and playing with adaira in his bed. i'm going to keep my fingers crossed that he stays comfortable all night and can get up to walk in morning so we can be home by the evening.

thanks again for all the prayers and good thoughts!!! he really is doing so great!!!!

always

am

cute thing owen said tonite. i asked him if something hurt and he said yeah then i asked him what hurt and he said "me" :-) luv him so dang much

surgery #16 1/2 complete

all is well here at children's mercy. owen is resting in his bed watching one of his favorites-elmo in grouchland. and nick is asleep on the oh so wonderful sofa bed....for those of you that have been you know i'm being sarcastic about that. for me i'm preparing for what i think will be a long night to go the long day we had.

owen did absolutely wonderful today!!! he expressed pre-surgery how he didn't want to do the surgery today and wanted me to go to the surgery room with him. which completely broke my heart because i knew i couldn't. he kept saying that he wanted to go to the pizza place that we went to last time after they cancelled his surgery but then when the nurse asked if he was allergic to anything he said pizza. when the time came for them to take him back he was the perfect big boy trooper he always is. he even walked with the nurses instead of being carried. he is such a brave boy!!!!

owen left us at 9:45am. at 10am we got the call down in the surgery waiting from a nurse in the operating room that they were successfully able to get owen put under anesthesia and were starting on the surgery. yay!!! natalie was with us the whole time and just in time for lunch rylina and dom joined us. it was so nice to have people with us to keep us company. at 1:45pm we got the call that owen was in recovery and the dr. would be down to talk to us. dr gatti (which is one of my favorites) let us know that everything went as perfect as it could, he should have little bleeding and may be able to go home tomorrow if he does well over night. owen still had to come out of recovery before we could see him which took 2 more hours because of them being very cautious due to his heart history.

so finally at 3:45pm, 6 hours since he left us, we were able to see him. :-) he cried when he saw us and so did i. he seemed out of it and in a lot of pain. he instantly wanted a drink of water (surprise surprise) and then asked if he could take his water with us to the pizza place. he has been sleeping off and on, sometimes falling asleep mid sentence and saying some of the loopiest things. like "i can't take it anymore" and then i asked "take what owen" and he said "never mind". he is getting a constant drip of pain meds and they can press a button if we feel he needs more.

around 10:15pm he said that he wanted to sit up, so me, nick and the nurse helped him sit up. after about 2 seconds he started crying because of pain which made one of his stitches bleed some. but after all that he had a ton of urine output which is a very good thing because i was starting to worry because he hadn't had any for a few hours which is totally not like him. so i figured out that he wanted to sit up because he was uncomfortable due to his bladder was so full. he hasn't had an issue with output since then. :-)

he has been eating lots of snacks and drinking plenty of water. if he continues to tolerate them over night he will be able to move to more solid foods in the morning. he still keeps asking me when he gets to have dinner and go to the pizza place. :-) i just got up to peek at him and he is sound asleep!!! let's hope that continues for the rest of the night.

i want to thank everyone for all the prayers and good thoughts. nick and i couldn't do this without the support of all our family and friends.

always

am

school meeting

today's meeting with the the school district did not go well. i'm going to back track a little bit here just so everyone can understand better what is happening. owen has been receiving services (physical therapy, occupational therapy, vision teacher and at one time speech therapy) since the day he came home from the hospital. from birth to age 3 it is paid for thru a state service called missouri first steps. and once they turn 3 they go into their city's school district services. for the first 2 years the therapist came to our house. when owen turned 2 he started going to Children's Center for the Visually Impaired ( CCVI ) as a pre-school to focus harder on his visual impairment. this was paid for my mo. first steps. every year around his b-day we have a meeting with all the therapist, case workers, teachers, social workers and so on to review his progress and go over his goals for the next year. for the last 2 years he has been in the independence school district they have let us keep him at CCVI because they don't have a visual specialist for pre-school. what this mean is that for the last 2 years independence school district has paid for owen to go CCVI which is in KC and this last year they have transported him there as well. so now that owen will be 5 in june he is kindergarten eligible. today at hsi meeting the independence school district says he has to go to kindergarten in independence next year to continue getting services from them. even though mo. law says he can wait one more year to start kindergarten. which is what we want him to do because of his size and his upcoming transplant. when he has his transplant he will be out for about 4-5mos. : 4-6weeks recovery in hospital, 2 months no outside contact, 1-2 months gradually rebuilding strength and outside contact. so we want him to stay at CCVI where he is comfortable, we know the environment, trust everyone, and less people to spread germs about. but the school district wants us to just put him into a new environment with 450+ kids/teachers all 2 feet or more taller than him, that i don't know or trust just as we are about to go thru one of the most difficult and life changing experiences. it just not fair!!!! they said if we decide for him not to go to kindergarten we can home school him or pay ourselves for him to go to CCVI. :-( everyone from CCVI also thinks it's best for him to stay there so i'm just hoping we can work something out. nick and i have 10 days to make our decision.

on a good note, tonight we got everything packed for wednesday :-)

craziness

we had a crazy busy weekend and it was probably a good thing because it didn't leave me much time to think about this coming wednesday. it started with noah running a fever all day friday so i took him to urgent care where his temp. was 104.7!!!! because of an ear infection. he is on an antibiotic and seems to be feeling much better. saturday we went to a going away party a friend in the afternoon and then all of us girls from the salon had hair to do for the Rock n Fashion Show at Crosstown Station. like always we had a great time hanging out and doing what we do best ;-) i love my big sis and all my hair spray sistas!!!!! sunday we had a baby shower for Debbie (from hair spray cafe) and then it off to nick's parents for a great dinner for nathan's b-day and owen's surgery. nathan made us the yummiest steak on the grill!!! and the craziness continues monday with a meeting with the independence school broad to try convince them to let owen go one more year at CCVI and not go to kindergarten next school year. i've already gotten the feeling from them that it's going to be a fight :-/ i hope i'm ready for it. my two main reasons are his size and when he gets the transplant he will miss at least 3-4 months. after that i will have a little over a day to get the family ready to be gone 3-5days. big sigh........like i said, it's crazy around here.

i hope owen's little heart will let this surgery happen this time so we can get this done with and move on to the bigger picture. i hope owen recovers as planned and this surgery doesn't worsen his medical condition. i hope we are bringing owen home by the end of the weekend. and i hope all the crazy thoughts in my head don't get the best of me and i can smile and stay strong through it all.

Happy 18th Birthday to my niece and nephew Jessica & Jacob!!!!! one year ago today we were all in walt disney world thanks to my mom where jake and jess got like 20 cupcakes for their 17th b-day. it was such a fun trip that i will cherish forever.


owen's funny words today. on the way home today he asked me what day it was i told him sunday. then he asked what day is it tomorrow and trying to make him think for himself i said "owen think about it what day comes after sunday" and he guessed "thursday" i said no, then "wednesday" i said no then he said "hmmmmmmm, yesterday" :-) such a goofball!!!!