Very good. Chance curbing will get to leave hospital tomorrow... We will stay at Ronald McDonald house a night or two have to wait for dr to tell us... Very excited he ate pancake for breakfast and hotdog for lunch and afternoon cookie and all stayed down!!!

pics

Korbin at Art Therapy

Korbin at Music Therapy

Megan and Korbin, she took care of him most the time...

Sara and Korbin ( before surgery pic) His fav nurse and girlfriend :)

The star I made today..

12-30-11 9pm

Pretty successful day!!! Korbin had some crackers for breakfast… Then had a little cottage cheese and crackers for lunch and then a few bites of ice cream sandwich  for afternoon snack. Everything has stayed down . We had a disaster with the ostomy bag, leaked all over creation, I am still learning all about it.. Think I am going to invest in some good rubber sheets for when we get home.. that was a HUGE mess!  Went to art club again today, Korbin really enjoys going made a star thing.. I will post a picture. Then we Went down to the toy room and colored with a couple other kids for an hour and a half tonight… Couldn’t get him to eat any supper, but he has done so well today!  Took a little wheel chair ride just to get out of the room.  Korbins  girlfriend and favorite nurse was just in to see Korbin, He had just fell asleep and He heard her voice and he woke right up! He was so excited now he is wide awake!  Over all pretty good day… Mommy and Korbin are very ready to go home!  Korbin cried and said,   “ mommy we go home yet…” broke my heart… I am so glad that Tears are truly a language that God understands!!!

10pm 12-29-11

Well.. I think today has been the more positive days that we have had, even tho Korbin was pretty crabby all day. It started off with a 4am morning stroll around the until, then down to get an xray .. then back to the room and then down to art therapy… then up to the room for lunch and a lil rest time then  down to music therapy.

All the behind the scenes while Korbin was out and about, The head surgeon Dr Calkins met up with me.  Korbins Xray looks way better this morning, the “swelling” from the gas in his stomach has gone way down!  Korbin has been able to keep 2 ounces of apple juice down today… We may get wild and just let him try a cracker tomorrow…  Dr. Calkins also shared that as long as everything stays on upward motion as soon as he eats and keeps it downs … we are out of here! We don’t have to stay at Ronald McDonald house for a week ( maybe a day or so just to make sure)  but we have been around long enough and were almost out of the “danger zone”  !!  He is still getting food by IV for 18 hours of the day, he likes being “free”!!  I changed his osomy bag not once but twice today all by myself…  It went very well, just have to figure out how to get it to stick better around his belly button, I have a few ideas, have to run it past the provider to see if they will work..

Just keep praying that we are on the right path now… Give thanks to the Lord for His almighty healing hand!

9:00am

This morning at 4am Korbin wanted to take a walk so we did. Then we down for another xray which showed that the swelling and gas build up in his stomach had came down, but his intestines and colon are still very much asleep. They are talking about doing a CT Scan later today or tomorrow. His coloring is very off again this morning.  Also crabby, I think we are going to try to do some art work and keep him busy.  Kinda the same as yesterdays post, the nurse just gave him pain medicine and nausea medicine. Hopefully that will help some. The surgeons seemed a little baffled this morning why his intestines haven’t started to wake up yet… Please pray for dr.s wisdom …

12-28-11

6:30pm

Its day 15 in the hospital…  Sometimes  I wish I didn’t have emotions.. I would say this has been one of the harder days. Korbin was so happy this morning and then this afternoon we went and did some crafts with papa and grandma… then bam all the sudden he didn’t feel good..  The surgeon came in to check on him a little bit ago to see if the vomiting had slow down today, I said yes, but he hadn’t had hardly any water today.

The surgeon shared this with me..

Korbin is making good progress, however we are very far from being out of the woods, you may be here at the hospital another two weeks. Korbin is basically asleep from breast bone to rectum. (inside)  This is going to take time for him to heal and wake up. He has gone through not one but two very invasive surgeries in a very short time. We must continue to watch for infection and the “puss pockets”. Korbin had a lot of poop exposed to where it shouldn’t be… Think about it this way…  think how when you get a splinter in your finger that one area is really irritated and aggravated  even after you get the splinter out… Now Think about having splinters in your finger all around the tip how much it gets irritated and how even when you get them out it still hurts.. That’s similar to Korbins intestines’, all this yucky stuff rubbed up against it, and it has been to sleepy to fight back and shake it off. Now we must wait for it to wake up and begin to heal before we can move on.

It’s getting harder and harder every day for me to realize time is the most important thing right now for Korbin.  We are praying for no infection, all though his percentage of having “puss pocket” is very high we are continue to monitor very closely.  Doc shared that we could be here two more weeks and then a week at Ronald McDonald house..  My heart sank, I am ready to be home, however this is where my lil man needs to be this is where we shall stay! Please continue to pray for him that his lil body will fight the infection and that his insides will wake up! There has also been a lot of talk about NG tube again... please pray that we wont need that;.

9pm update 12-27-11

Korbin had an up and down day... PaPa and Grandma Swenson came for a visit.. then this evening we tried to get him to take some pain medicane by mouth and it came right back up.. So they did an xray due to the fact that he has not been able to keep anything down...

Quick Glimpse for an update... Suergons were just in to talk to me... Korbins actual stomach is enlarged and full of gasses it is very irrated and asleep. Radiology is going to compare his xrays from other day and look over tonights and see if they can see anything else... Dr said that maybe just going to take more time for his stomach to settle down.. He has been such a tropper.. So at this poi...nt.. nothing danergous is going on that we can tell at a quick glmipse just that his insides are VERY irrated and they dont like anything right now.. Were back hooked up to IV food and morphine through the IV Please just keep praying for my lil trooper... He smiles even when he is in pain.. I have so much to learn from him..

WOOOHOOO Tueday 12-27-11

Just found out... at noon they are going to detach Korbin from everything for a lil while! See how he does..

Tuesday 12-27-11

7:30am

I got to see Korbin smile, giggle and get excited this morning! So we have been doing the same lap around the unit day after day, so at 6:30am ( we been awake since 4am) I told Korbin I was going to run downstairs really fast and get a coffee and I would be right back, Korbin flipped out and started crying and screaming. So I asked Korbins nurse if he could walk us down so mommy could get a coffee cause Korbin wouldn’t  let mommy leave his site. The nurse has to be with us if we go off the floor because the morphine pump. The nurse said “ ya no problem lets rock!”  I was floored! So Went back and told Korbin we could go and he smiled huge and said… “ we better change my diaper cause I got the pee”  LOL We went VERY far!  Korbins room is on floor 9 we went down to floor 2 and to the east side of the hospital!!! He walked there and back… I am such a mean mommy I said if you want to go you will walk all the way… He never once asked to stop or sit down. The nurse being a softy let him sit when we got to the coffee shop J  Then he walked all the way back..  Really proud of him, way to go Korb!!! Now he is exhausted in his bed. J I bought some Honey Nut Cheerios for him to try to day…

8:00AM

Going to interrupt myself.. the surgeons just came in… Today is the BIG TEST! His first day off the antibiotic, we have to stop somewhere and see what happens…   Yep I almost lost my breath when they said this, but its true we have to see what happens. Can’t keep him on antibiotics forever;  We will also cut the food by IV back to only 18 hours instead of 24 hours, so hopefully he will get an appetite and slowly try to get him eating again… It’s been two weeks since he has had solid.  We have also decided to take away the morphine pump and do oral pain medicine if needed. Also they said if that’s now working they can always do morphine shots in the IV this way Korbin can be a little more mobile which we all think will greatly help him!

8:30AM Just took morphine off...
I cant keep up this morning.. :)

Tuesday 12-27-11 ~~ 4AM

Well it's been quit the morning... Korb wet the bed in the night so while the nurse changed his bed I changed him and his ostomy bag all by myself and didn't make a huge mess! However he was determine for mommy to clean a mess up.... he threw up pretty hard in the middle of all this... But super mommy caught it.. Whew this could be a long day specially if they want him to try to eat later.... Yes I'm nervous about this...

Monday Night 12-26-11

Well at noon we went down to the playroom and played with his lil playmate…. She is such a cutie!  Hopefully tomorrow she will let me take her picture.. She is 5 and her favorite word is NO! J Sounds like someone else I know! J  We came back to the room about 12:40pm had a really nice play time it was really nice to see Korb up that long!   Korbin laid down for a lil nap which turned into an afternoon nap …  We woke him up about 5pm thinking .. well I want him to sleep tonight … and not 20 mins later he was back asleep…. And is still asleep at 9pm… I worry what tonight may bring…  So today was a well rested day for him. I have already begun to pray about tomorrow.  Tomorrow they are going to take Korbin off the nutrients IV bags from 2pm-4pm to see if he may get an appetite. They may also try to take him off the Morphine in the next couple of days and start giving him something by mouth instead.  Dr. Berg heard some gurgles tonight and yesterday his osotmy bag was very full of air. Both good signs!!!  We seem to be getting a little more out of the woods… Think I may see some flowers at the edge of the woods.. J There is talk that MAYBE HUGE MAYBE we will get to leave the hospital on Friday, then we will go to Ronald McDonald House for a few days… How many days will be determined by Doc later in the week. I am ready to have my spunky funny korbie back.. He has been telling the nurses “ see ya later hot stuff”  it totally cracks the docs up…   I am truly blessed to have the surgeon team we have. There is ALWAYS a surgeon on the floor only 3 hospital rooms away!  They stop in very often to check on korb sometimes I wonder if they don’t just stop in to hear him say something funny.  Honestly I am glad when they stop in, gives me a chance to visit for a quick minute..   The nurses have been amazing, last night they just let me sleep and they changed   korbins pull up for me, I am surprised he let them, but they got the job done… Just say a lil prayer tomorrow for Korb that he may want to try some food and that his tummy will be prepared for it.. They said don’t be surprised if he gets sick, we just have to try again it’s been 2 weeks since he has had any food…   good night folks… better get some rest while I can… who knows what lil monster will be up in the night going bump… J

Monday Morning 12-26-11

Well  it’s day 12 in the hospital.  Not a lot changed over the weekend…. Korbin was able to drink some water  and apple juice ; and was able to keep it down. Dr. Lal said that Korbins colon is still very much asleep and its going to take time.  We can’t leave hospital until he is able to eat, keep it down and poop. Dr. Lal also shared that Korbins colon is like someone who has the most horrible flu you can imagine, and we have to be very patient and really careful of dehydration and infection, since there was so much poop exposed to his belly.  This morning the nurse specialist walked me through how to change his ostomy bag, I was a little nervous but it wasn’t that bad.  This is just a slow process that I am going to have to get use to… The very earliest we will be home is 2 weeks…   The surgeons expressed this morning in rounds;  that the earliest Korbin may be able to leave the hospital is Friday, then we will have to stay at Ronald McDonald for a week.   I guess I rather be safe than sorry… Especially after having the scare and  emergency surgery last week.

Christmas day 2011 Milwaukee Childrens hospital

Our day at a glance.. not to much change in his care, he did try some apple juice for lunch.

Good Morning... " mommy santa here

Opening Stoacking

" oh my gosh totally what i wanted"

"wow cool!"

Dr. Lal and Korbin

Dr Jamshjeedy, Korbin and Dr. Haninni

To much excitement this morning... had a cat nap by 10am :)

My dinner from Ronald McDonald house, they made a plate and I was able to eat

it over at the hospital so I didnt have to leave Korbin

Beatiful Christmas sunset....

May we always remember why we have a CHRISTmas in the first place!

12-24-11 ~ 10am

Well… Just a little morning update… Korbin threw up pretty hard this morning.. Going to try to continue the water today..  Pretty fussy this morning, went down for a chest x-ray because of the little continues cough all day and night.. Chest xrays looks good. Korbin is just taking extra time to heal; his bowls are still very much asleep!  When we finally get out of hospital, Dr. Calkins wants us to stay at Ronald McDonald house for a week just to make sure we have no problems. His stoma is very short, much shorter than they would like, so they want to make sure it’s going to work for him… We just have to wait for his bowls to wake up and Dr. Jamsheedy said that they will take time considering he had to big surgeries back to back.  We won’t know if the stoma will work well until his bowls wake up and he starts eating,. Just kinda play the waiting game now..

12-23-11

Well… We have had a busy day…Cousin Bruce Dugstad (grandma graces cousin) Pastor Friend stopped in to see Korbin this morning… that was a nice surprise..  Then we napped all morning cause Korbin coughed from 3am till 9am..  ( and all the rest of day)

Then around 1pm I started learning how to change Korbins Ostomy bag and clean it out. Going to take a little practice, but I think I will get the hang of it quick.  In the middle of that Korbin got a package from Emily Coon and family.. what a GREAT surprise and not long after that Grandma Ginny and Papa Kim walked through the door… ( Which my brother had something to do with…)   Korbin was so surprised he didn’t say much just smiled really huge!!! Then like 15 minutes after that Korbin got another package, from Cousin Bruce..  Then Mommy and Grandma ran over to target while Papa stayed with Korbin.. Mommy really enjoyed that time out!  Target was crazy busy! It was nice to see the hussle and bussle and hear the Christmas music…  We got back and Korb wanted to go down to the toy room..  So we went down but only stayed like 5 mins and turned around and came back he said he was hurting a lot.  So we came back and we were in the room for just a little while and he threw up.  So the nurse had the surgeon come in and check things out.. His fever has slowly been creeping up, so we decided to do some respiratory therapy. Got done with that and he  fell asleep watching Santa Paws…

Just Lots of lil things made for a busy day… Very lucky to have my folks here with us… Tomorrow we will work more on drinking water and getting it to stay down. That has been hard for him; they have him on nausea medicine to help with that!  Please keep him in your prayers were not out of the woods yet as Dr. Calkins says it…

10pm update...12-22-11

Well surgeon was just in to check on Korb.. The one who was being so hard on himself about Korbin having a leak… Such an amazing person, come to find out he has been in 4 or 5 times today…  Korbin opened  his eyes and said “AGAIN?!?!” and I gave korb  a funny look and said don’t be rude sweetie…   Then Dr. Jamsheedy said that he been in and out a few times today, just checking on him we were napping a couple of the times.  And Korbin had every right to say again… lol the drs here don’t take things lightly… they truly care about their patients!!!  I tell you its an awesome facility!!!!!

These Evening he had some more ice chips and we started to watch “ how the Grinch stole Christmas” but he totally fell asleep on me LOL .. he was smiling and blowing kisses at me tonight.. what a great feeling, really have missed that the last few days!  Making good  progress, however we have 8 days before we know if infection has set in. Please keep praying as he has antibiotic everyday.. and everyday his lil body will get stronger…

12-22-11 ~~ 4:30pm

Goodness We have had a very protective busy day! Korbin had a VERY special Visitor this morning..  “Curly” one of the pet therapy dogs (labadoddle) came in to see Korb! He loved it!  Played some video games for a little while.  Then after that he got his catheter out!!!  Then around 3pm he got his NG tube out, and got to have a sucker and a couple ice chips.  Still no water till maybe tomorrow  evening... We have to go really slow other wise he could get sick all over again because they have been sucking everything out of his stomach.... He was happy just to get an ice chip!  Then we went for a walk and played in the toy room for a little bit and he walked all the way back.  He is totally exhausted; he fell asleep in his bed playing with his truck J  Lots of good progress this afternoon!!!  Still has a fever and still has to be on oxygen, but lil steps... lil steps..

Pics

Mommy Telling Santa Everything Korbin wants for Christmas

elf Jake keeping an eye on Korbin

Nurse Megan... she had korbin 3 days in a row.. She is an amazing woman!

Look our own lil zoo... and my favorite lil monkey in the middle! :)

We wemt amd seen Santa before we left for Milawukee ...

Very Excited! 12-22-11~ 7am~

God we give you all the glory for korbins healing and progress!!!! Ok ready for good news?!?!
Korbie's heart rate is down to 104!!!!!!!!!! Still a little fast for at rest, however it's better than 152!! He is talking this morning and smiling!!!! Been 3 days since I seen that... Still has a fever .. But we Just want to praise God for His mighty healing hands and giving the dr wisdom and guidance through the last few days .... 

He still has a fever and all his tubing... but man ill take his smile back anyday!!!  Suergon shared that its a great sign heart rate is going down, means the poop is getting out of the system and hes not having to fight so hard...were not out of the woods... just startin to take baby steps to recovery!!! :)

12-21-11 ~ 6:00 PM update

Today has been a quite day. Korbin has slept most of the day.  Really blessed that Shannon ( Korbins Dad) got to come over and be with Korbin, I was able to take a break a leave the hospital for a little while. I so needed it!  About 1:30pm they prepared Korbin to go down to X-ray once again, where he received a pic line.  This is an IV that is in his upper arm that goes into an artery and down close to his heart. This is so they can give him nutrients in his IV since he is unable to eat at this time. They are trying to get his guts to heal a lil before we start sticking food in there again.   While he was in getting his pic line in Shannon and I walked around to the lobby where they were having their winter carnival. It was so nice for the kids. They had ice cream, popcorn , games, crafts and Santa.  We took a picture of me and Santa to show Korbin I was telling Santa everything he wanted.  Santa Gave me a nice goodie bag to bring back to Korbin..When we got back to the room  I showed Korbin the picture and he said “ awww thanks mom”   then I showed him that Santa sent him a special get well gift and he smiled… Been a couple days since I seen that smile.  That’s been the hardest part. He is resting well, his color is back in him. We have really enjoyed the staff here. They truly care!!! I forgot to share last night when I was waiting in the waiting room for him when he was in surgery..  A surgeon who I have no idea who he was. Made a point to come in and offer me a blanket, juice or water. Just really comforting to know that he cared enough to stop, and if he cared enough to stop then I know he truly cares about the kids at the hospital!  Just a really comfort feeling.  All 3 of Korbins Surgeons stopped in to see Korbin this morning, the nurse said that does not happen very often.  They truly wanted to make sure he was doing better and in my heart I really feel like he is! Like Dr Calkins shared… hes stable, however were not out of the woods yet.. We still have to worry about infection since so much poop was exposed to so much of his lil body. So please pray that all the yuckies stay away!!!  Signing off for now…  

12-21-11 ~ 6:30 Update

Wow…..  Korbin pulled through surgery like a champ!!! He has been such an amazing trooper through all this!  Once in surgery it took docs an hour and half to find the leak. The leak was about the size of the tip of a ballpoint pen. It doesn’t seem like much but on the inside it’s A LOT! It was enough to fill Korbin’s abdomen with poop and gases.  Once they fixed the leak they literally washed his insides with soap and water trying to get rid of all the bacteria.  They were able to fix the leak however with so much poop just floating around in there it really irritated all his insides. So they stitched the site back together then they took a piece of the “apron fat” and used it as a patch\bandage over the staples. The doc  tacked the fat apron  to the colon to kind of help hold it together.  Just below the site they left a drain tube in, hopefully if there is no more leaks.  So hopefully either the fat will catch it and it if that don’t happen then the drain tube will catch it.  Ok so got him all stitched up there… Now moving on to the rest of his body..He DOES have an ostomy site.. We will use the ostomy site and his button to keep poop out away from connection site and help keep the tissue less irritated in there. He also has an NG tube to also help keep everything out and a catheter.  He seems to have tubes everywhere… Dr. Lal shared that we are stable but not out of the woods…  He had A LOT of poop just floating around in his belly so we worry about infection, puss pockets, of course all the sites being infected… Infection is a big worry.. Temp has been a steady 103.3 through the nite…  Yes we will be here for Christmas… They expect him to be here at least 10 more days.  Could be longer, he said he would be very surprised if we got out of here in 7 says… I told him I had a mighty God! He smiled and said “ I know so do I!!!” VERY encouraging!!!!  Please pray that Korb will leave all his tubes alone.. He has already partly  pulled out his NG tube ( in his nose) on  accident, I think he just got confused and scared and pulled a little and it started to come out. He knows now that he can’t touch it..  Thank you so much for all your prayers, support and encouraging words.. Really means a lot.. I had a good cleansing cry yesterday and I am ready to tackle a new day!

12-20-11 4:30pm

Ok... here is the latest (4:30pm) update... just got back from xray and CT scan ... CT scan shows Korb has a leakeage where they reattached his colon, He will be gonig in at 7pm tonight for surgery, they will probably have to do an open cut on him.  He will also probably have a cosotmy bag ( ill explain that more later if it happends) " We Praise you Lord for the Dr wisdom and stregnth.. They have been wonderful at explaining everything and keeping korbin comfortable. 
We ask Lord  for you to guide them with a steady hand and clear mind as they go in once again... Jesus name we pray amen"

12-20-11 ~ 1:30pm

Were back from xray... They have started to suck korbins poop out through his c costomy button to relieve some of the pressure in his belly... .. he is very crabby.. I asked him if he wanted some french fries and chicken nuggest with ketup and ranch ... and he said " NAH they no good"  floored me thought it i would get a well.. maybe... and i got a very very quick no!  He has been drinking and its staying down!!! Maybe tomorrow we will get to get off the morphine pump...  They are having a christmas festival thing down stairs and the nurses really want korb to go down to it... infact the one nurse told us if hes not of the pump she would take him down for a few mins..  He cant leave the unit while on morphine pump...  I am going to try to get some lunch now while he is snoozing... Catch up with you after 5 unles something changes.. :)

12-20-11 10AM

Ok going to do my best to explain what they are doing.. they have hooked up his "button" to a diaper and they are trying to get the button to drain into the diaper... He will be going down for xrays and more test this afternoon. His belly is very full looking... Dr Calkins was just in really amazing doc.... He thinks that where he connected korbin back together that is very swollen and the poop\gases are looking for another way out.. that the gases are not wanting to pass through that area.. which is causing lots of leaking through his c costomy button...  i was able to get him in the chair and sitting up this morning.. he has oxygen off at the moment... they are trying to keep him off as much as possible, but if he needs it they very quickly rush to put it right back on.. Dr. Calkins is concerned with the high fevers..  just going to watch him really close next few days as we wait the blood culture results..

12-20-11 7am

Well we got some rest last night.. I hope things continue on the upward swing....He is urinating now....... I weighed a dry diaper.......it was -85 grams.....then weighed his wet diaper and it was 345 grams...I think that area is finally beginning to work good. LOL
He is still "lifeless" Just wants to lay in bed doesnt want to move ... heart rate is staying right aronud 195 while he is resting... dr said that its ok that he doesnt want to get up and move around much because of heart rate.. Oxygen level was VERY STABLE through the night... of course WITH OXYGEN on...  Fever is staying right around 102 ... Blood pressure is back down to where it should be... 
They are still double IV on him, they said they would do this for a lil while until we can get him to drink really good to keep him from dydrateing again..  The water is retainning everywhere, he looks very very bloated in the tummy this morning.. I am waiting for Morning rounds to see what they have to say...  Dr Berg ( suergon) said that every so many hours they post on the blood culture and if anything is growing yet.. he said that he would watch close through the night and see if they post anything .. so i am kinda wanting to hear if anything has been seen yet.. but no final word until wednesday morning..  The staff here is so amazing!!!!!!  If anyone would like to skype later.. let me know.. iowaqtpi ... thats our skype name  :) I am trying to encourage him the best I can.. signing off for now..

9pm 12-19-11

Surgeon just came in and visited with me for almost a half an hour... He is VERY AWARE of what's going on with korbin as far as his levels being all over creation... He has asked staff to keep extra close watch... Not to be alarmed but should be concerned! We will not know blood results till Wednesday morning.. Going to keep him on oxygen for a lil while and then extra bag of IV through the morning.. His heart rate resting is 195 which again concerned but not alarmed... He was very reassuring tonight.. Which I really needed after today, such a rough day to watch korbin go through and be so lifeless... We appreciate your prayers very much!!!

Korbin is very very dehydrated ... He now has 2 IV s.

6pm... update... 12-19-11

Korbin has had a rough day...  He did not even want to go down to the toy room..Having alot of pain. So far the water has stayed down... He has been a funny color all day and puffy, he is retaing water..They have ADDED another IV bag and are doubling up on IV fluids... He is not producing enough pee well so they are gonig to fill him full and see if they can get him to go potty.. Temp is staying at 101.4.. Suergon stopped in for a minute and said hi and he would be back.. he is going to review all of todays activity and come talk to me with a plan... about the time that korbin should be ready to try to go potty.... ok thats all for now.. thank you all for your prayers...

5pm 12-19-11

Korbin has drank about a half glass of water this afternoon.. So far its staying down...

One more 12-19-11 afternoon

Korbin accidently pulled his IV out of his foot... Some how I manged to guide it back in until the nurse came in...  she said I got it back in just fine... " Thank you Lord for guiding my hand, that would have been really rough to put Korbin through.... thank you Lord for the Docs that are working so hard on Korbin... thank you Lord for giving us the nurses that unselfishly help even when its the really really gross stuff! Jesus name amen"

Update 1:00pm Dec. 19 2011

Oh we have had an up and down morning...  First thing First I want to give Hospital Address because 3 or 4 people have asked....

Childrens Hospital of Wisconsin
C\O Korbin Swenson W922
9000 W Wisconsin Ave.
Milwaukee Wi 53226

Now on to where we are today... this Morning at 4am  korbin had a fever of 104.4 and throwing up... Scared me big time... They took an xray and blood work at that time. We will not get the blood results until noon on Tuesday... They have to wait for the culture of it. The xray showed that Korbins bowls are still very much asleep from the surgery.  Finally got Korbin to give a urine sample about 12:30... we will hopefully hear back this afternoon from that... He is truly being a lil trooper... He is having Lots of pain. If anyone wants to skype let me know.. He likes skyping and seeing faces...  He talked to the cleaning lady for a few mins this morning ... Everyone just gets a kick out of him, the one nurse put ice in his apple juice.. and he says... "hey hot stuff... you got ice in this... thats not right"  LOL She very sweetly changed it for him.. we all got a chuckle out of it... Kind of a cloudy day here... which is OK with me... maybe we can get a nap in later..  I think his fever just broke he is VERY SWEATY AGAIN!
A couple things to pray for...
1. Of course Korbin and the pain and that he gets better..
     1. That he drinks
      2. that he his bowls wake up
      3. figure out why his numbers are all over the board
also pray for mommy as she is tired... help her to stay focused and cheerful heart for korb...
thank you all for your prayers and thoughts and cards... korbin really has enjoyed getting the cards.. we have them hanging up all over the room..

Please say a lil prayer for korbin... His temp has spiked up to 104.4 and he is throwing up he has gone done for xrays and lots of blood work...

Well... Today was quite the day... Korbin gave me and the nurse a huge scare... His blood prayer shot up to 156/132 after meeting with the surgeon and the cardiologist they came to conclusion that he was in so much pain and not telling anyone.... The surgeon even pushed on his wound sites kinda hard and asked korbin if that hurt and korbin told him no.... I would have probabaly kicked him if he would have done that to me.. We colored a lot today...he went for a few walks today... FINALLY got him to drink a little... Few sips of water and apple juice.. He was able to keep that down ok.. Tomorrow we will try for jello... korbins "girlfriend" came down and seen him this afternoon and to check and see how sugrgery went... He made her a lil snowman and she cried... She truly is an incredible nurse!!! He got to have the oxygen off for a lil while today but its back on for the night.. With it on he is staying right at 92% they would like him to be 92% without oxygen... Normal is 100% ... Well that's all for now hes beeping again... Good night..

Pics.. Day after surgery

Hanging out with his stuffys...

Getting ready to do his breathing excersises

The cute lil Ornaments we made..

New room..

Just wanted to share if you send a web card, He is in room W922 now... the surgerical floor...
http://www.chw.org/Applications/PPF/Nav/1/DocID/25406/GreetingCards1_Display.asp

Day After surgery...

Well... Its been a rough day..  Korbin slept through the night last night... Our biggest challenge today was keeping his oxygen levels up. He is currently on a litter of Oxygen to keep his levels up. Finally this evening with the oxygen on his level has stabilized!!  He tried to take a lil sip of water this evening, and it came right back up... We will try again tomorrow..  we had fun making Christmas ornaments this afternoon.. I tried to make his room a lil more home feeling, hung up his greeting cards and the ornaments that we made..  He went for a couple walks today down to the toy room.. Nighty Night... ill post more tomorrow...  ps he got his catheter out this morning.. stilll has IV in his foot.

Surgery Day..

Korbin did a Great job in surgery today. Dr Casey Calkins did an amazing job with Korbin.
They ended up taking at least 3 feet of sigmoid colon. I know how much until tomorrow when we meet with Dr Calkins.  He is resting very well tonight.. he has maybe been away 15 mins since he has got back to the room... He is getting a continuous Morphine drip right now to help with pain...  Hopefully we both will get some good sleep tonight...

12-13-11 ~ 4:00 pm

Around noon the helicopter team came up and got Korbins IV started...  They did an amazing job!! One stick and they had it! They also taught me a new wrap\swaddle to use on him! Lay the blanket folded under him and then swing a piece of and tuck under his body and then take the other piece and go around his arm and under his body... very awesome idea!  He has watched some movies, and we also went down to craft time... he made some really cute things.. he was so very happy to get out of the room. He had a HUGE poopie about 2pm..  Still have a ways to go. We are working on "waking" up his bowls... The one doc said he is VERY full... I wanted to say " really... ?!?!?! tell me something new" but I didnt..  Just kinda frustrated when they dont listen to me how full he really is.. I showed her how I know when he is full and she was in amazement that I pay that close of attenetion to my son.  That really blew me out of the water. Thank Goodness Dr. Calkins is doing the surgery! Tomorrow at 7:15am we will go down and being his test.. The Ronald Mcdonald house was so beatifully decorated!!  So far we have counted 32 ambulances that have left the hospital... busy day...  well i am going to sign off for now... ill keep ya posted as i can.. korbin is just resting right now watching another movie...

Pictures... @ childrens hospital

This is at the Ronald Mcdonald House When you first walk in

Went down and made some art projects at the hospital

This is the tree that Ronald Mcdonald house gave Korbin for his room.

These are korbins art projects he made this afternoon

starting out...

Well they have korbin hooked up to IV and to C-costomy working on getting him all cleaned out...
You can send Korbin a greeting card to his room W1103  if you go to this address they will print a card and bring it up to him..
http://www.chw.org/Applications/PPF/DocID/25406/GreetingCards1_Display.asp

12-13-11. Safely arrived

We made it to Milwaukee ok... Korbin slept most the way... His allergies are really acting up tonight... The Ronald McDonald house is decorated so pretty for Christmas I'll post some pictures when I get a chance...

Goodness...Been WAY to long...

Its been way to long since I wrote here... Ok FAST verison and I will add more details later...
We leave for Milwaukee This Tuesday Dec 13... Korbin will be admitted to hospital Dec 14 They will begin cleaning out his colon, on Dec 15 they will do colonoscopy and motility study and Then on Dec 16 They will do surgery and remove 2 feet of his colon ( the last two feet) .. He will be in hospital for at least 6 days... http://www.chw.org/Applications/PPF/DocID/25406/GreetingCards1_Display.asp This is where you can send him a greeting card if you would like.. I will post room number just as soon as I know! Please pray for him as its going to be a long couple of weeks...

June 24 2011

Were back from Milwaukee after an emergency trip up yesterday. Korbins button fell out twice Wednesday night. I am so blessed to have such a strong brave lil man we just got home I'm getting him to bed I'll give more details in the morning. At thus moment he has just a little pain but resting well.

Well its been almost a month since I wrote here.... Guess thats a good sign, this last week we were in Milwakuee they did a button change. It did not go as well as we would have liked however the job got done! This was to be something I can do at home, how ever he will have to be admitted next time to have it done. They were unable to put him asleep this time the hole shut fast on them and they had to act fast. Pretty scare. looks like if everything goes well we dont have to go back for 6 months!!! PRAISE the LORD!!!   korbin should be able to go swimming this summer he is VERY excited he is out playing with his lil friends in the spinkler now.. ill add more pictures soon! :)

So we have made it into May, been a little while since I posted anything, sorry its been super crazy around here... I graduate May 12 2011.  Anyway, Korb is doing pretty well.. he has had very "productive" treatments! However is button is very sore and tender, we go back to milwaukee May 22, 2011  He asked me if they take it out.. its no good.. it hurts me... Breaks my heart so much.  He will move on to 1st grade in the fall, i got the letter in the mail today!!! He continues to go to speech, ot and counsling... he loves all the gals that work with him! he has came so far since the fall.. and then i think about how much he has gone through and how far he has come since Feb.. he truly is my hero!!!  He already gave me my mothers day gift  ( with help from grandma ginny)  he came running into the house  " mommy i got you heart u marry me"  he runs back out to find grandma...  comes back in rippin a bag outta grandmas hand.. see mommy.. ( talk about no serects!) lol he gives me a beatiful sliver ring with his birthstone that says mom... and then later he comes back in from playing and hands me a handful of dandilions.. " mommy you still marry me"  :) such an amazing lil boy! :)

Korbins button is working very well... The last few days he has been fighting a cold/allergies... Of course he does not let it stop him!!  Treatments are still a little stressful for him, but gettting use to them. He has been talking about the "huge tornado" that happened in the south yesterday and how the river is flooded.  Easter was VERY fun! He LOVED looking for the eggs! A squirrel broke open one of the eggs and ate one of his chocolates out of it.. and he said.. " that bunny he oh so sneaky" LOL 
Sunday morning at church he wanted his picture taken by the cross... this is what i got... and the dove and the light is photoshoped in, but korbin posed that way and i just happen to catpure it..:)

well so far the button has been working every night since we got back!!! i am sooo excited!! :)
this morning after church I couldnt find korbin, so i went hunting for him and this is what I found... talk about take mommys breath away!

Well we had a VERY good treatment last night... we got lots of "product"  when korbin for all done, he came running into me almost knocking me over and says....
 " mommmy  MOMMMY.... my butt works again!"

lol to funny!!! love the lil man so much!!!  here is his spring school pic

We are home, Korbin is offically all "cleaned out"  we are going to try the button for one month, we go back may 13, if things are not going well over this month, then we will talk about surgery at that point.... Which they will remove the last 2 feet of his colon and pull the good part down and reattach it... I am praying this button works, they said cause the blockage that he had he didnt have a fair chance at the button working.

Korbin just got back from X-ray waiting to see how the clean went he has his favorite nurse Sarah from last time were here I don't know who was more excited Sarah or korbin :) maybe we will get to go back to Ronald McDonald house tonight just depends on xray

Korbin was admitted to Milwaukee childrens hospital today. He is very full of poop again they have him hooked up to go lightly medicine through his button the goal is to get him all cleaned out and then tomOrrow we will have a plan he is excited he can see the helicopter pad from his hospital room we are watching home alone he is laughing so hard at the bad guys he has the hiccups lololol. He met the cutest little girl and she has a button too they were comparing buttons it was soooooo cute!!!!!!!!

We will be heading to Milwaukee this weekend as the button is not working well they will admit him and watch him for a few days

Here is a quick over view of the last week and a half  ( March 27) we made our way to milwakuee where we found out korb had infection around his button.. things havent been going as good as we hoped.. he hasnt been pooping hardly at all.. about the same as before button..  we got back from milwaukee tuesday (March 29) around 10pm.. it was a long day, as we had stopped at the Jelly Belly Factory and took a free tour!   Then wednesday we got up and got korbin off to school... i got a call from the school nurse around 1 and said korbin had  a huge mess.. So i picked him up milwaukee had us go to iowa city because we had though his button popped but it didnt, he actaully pooped out of his button site be cause he is so full off poop. so they put a bag on it.  we left iowa city about midnight.. i was sooo tired.. on the way home the song " stength will raise as we wait up on the Lord" was playing and this HUGE shooting star came across the sky and it lasted forever.. korbin asleep in the back seat quite as ever... the song got over and took for ever for the next song to come on.. and out of the back seat i hear this huge sigh.. right then i knew everything was gonig to be ok... sooo the treatments arent going good.. korb has been sitting on the potty for almost 2 hours a night.. i have been waiting for milwaukee to call back and see what our next step is.. i am almost sure they will take the 2 feet that done work out..and replace it with the working part...  thank you for your prayerse.. ill try to update you more often..

mar 28 2011

we arrived in milwaukee yesterday we are headed over to see the dr in 15 mins... his button is VERY red!
I wish it were working for him... will see what they have to say.. ill blog later tonight when we get back to ronald mcdonald house... they have been sooo wonderful!!

heading back to milwaukee monday

well back to milwaukee we go... korbins button is not working the way its spouse too.. and he may have infection...

Here is a picture of Korbin and Grandpa Swenson, from last time we went to Milwaukee... We stopped in and see them! :)

well its been a little while since I wrote here... honestly I m pretty frustrated with this whole button thing...  korb pretty much cries the whole time he does his treatments.. he has granulation tissue around the button which makes it sore feeling.. i think he has infection, but dr says its just the tissue up on talking to milwaukee on Friday, they said, " we may just have to pull the button and sew him shut and cut the bad colon out" due to the button not healing well..  korb has been such a little trooper!  we went for a long walk yesterday with a good friend and he complained of his button hurting... Just keep praying for him, that we will have a " break through"  My ( adopted) grandma betty passed away last sunday and korb has had lots of questions for me....   after going to vistiation he had seen her in the casket we came home and .korb & I were talking about how beatiful the weather was... we get home & I had the patio door open so the beatiful breeze could come in, It was real quiet in here, so I went to find korb, he was standing at the screen whispering " Jesus, be with grandma betty she go to heaven she die...(long pause) her family ... mommy tear go away... thank u for mommy.... it be ok Jesus amen" ** tears!!! ** ♥ Korbin... so then on friday I went to the funeral and he had lots of questions still.. so this is what I came up with for him... " mommy helped grandma betty go to heaven today... we sealed the box and the pastor put a very beatiful white cloth over it then he baptized her box ( cathlic funeral)  and then he put a VERY special stamp on it.. it was a crosss... and then we " shipped it" to heaven.... ( he asked about the cars)  "

PLease keep praying for korbin.. Treatment didnt go so well tonight.. he threw up all over and his button was really leaking after he did..  I think this weekend, were going to do a bunch of nothing!!!! :) just rest and catch up...

IT WORKS!!!!

Sooooo excited!!!!! The "button" works we got "PRODUCT"!!!!!!!

Well we finally got to use the button yesterday it was pretty overwhelming for korbin
He was just soooo sure it was going to hurt so finally got him calmed down enough that we could start and then he relized wasn't so bad we got to go Jo the Milwaukee public museum if ur ever in the area u must go it was soooooo amazing!!!!
We got to go in this room and see the butterflies. And the best part they would come over and land on u korb wasn't so sure about them touching him :)

So we have had a few little set backs, but thank goodness we got through the last two weeks.  Korb has relized that jumping up and down and bending over are still a little diffcult. We leave tomorrow morning to head to milwaukee.  I am VERY excited to learn how to use the button. I just conintue to pray that this will help korbin. 

A question that everyone has been asking is how long will he have the button, well thats not such an easy answer.  In a year we will go back up and he will have another motillity study done ( where they place the sensors in his colon) and see if the button has helped stimulate his nerves in his colon. If not, then they will begin removing sections of his colon and pasting them where they need to go so korbin can use his colon.  He did say korbin may have horrible tummy aches but it will be because this is the first time that he is feeling his colon work and he may not know how to respond. I just got off the phone with the head nurse she was just checking to see how he was doing. They truly are amazing people there!

Well it's been a long weekend korbin got full of poop so we ended up going tO
Burlington ER where he was given medicine to help him go. He says his button hurts
But he seems happy we got tO go to church on Sunday then tacos with my family
And that was enough for him he was soooooo tired he has been resting pretty well at night
My little sister Molly and her family have been here this weekend helping me and what a huge help they have been! Korbin is going to try to return to school today, yes I'm a nervous reck but his teacher Is amazing so that settles me some
We will return to Milwaukee next week and learn how to use his button I'm ready to use it so he can finally feel good! Please pray that he don't get full between now and then
Thank u for all u do for us'

Not so great morning

Korbin is in ALOT ALOT of pain this morning... Please say an extra lil prayer for him! thanks!

Offically home!

We are offically home. korbin is sore and stiff but very happy to be back home! We have to go back up March 2nd and they will teach me how to use korbins new button..  Trying to make some plans so Korb can see the swensons that weekend.. so please pray that we will be able to do that also! :)  Just  want take a moment.. and thank you so much for your prayers... support... cards.. gifts.. phone calls.. emails.. and facebook messages.. they were all such a huge support for both of us! We are truly greatful to have friends like you!!!

Sat Feb 12, 2011 ~ Out of Hospital

Hello~ Korbie  is doing very well. Very sore, but in good spirts!  He would like his button off but he knows he needs it. He is kinda understanding that his body needs the "button"  We have to stay at ronald mc donald house until monday, IF the swelling is down... then we get to head home.

Korbins out of surgery he did a great job!

Just took korb in

They just took korbinin for surgery he will be in 2 hrs

Update~Thursday feb 10 ~ 8:45pm

Well we had a fun couple hours at the childrens muesum today.  Then Kobin got to do Art therpy which was really fun!  He made alot of different pictures and a necklace. Family Dinner time was a blast.. he really likes that! So tomorrow is his surgery. We have to be there at 9AM, his surgery is at 10:45AM it should take about 2 hours.   He will have 3 cuts... and the button will go through his appendix... anyone who wants to text the cell around 11 is more than welcome too...

Good morning korbin is headed on a field trip with some of the other children staying here to the childrens muesuem he is so very excited

Update as of Feb 9 2011 ~ 4pm

We met with the surgon this morning. Korbin will go in for surgery Friday at 9am.
He will have a "button" placed in through his apendix. We will use this to force liquids down through his colon to keep his colon cleaned out.  The last foot and a half of his colon does not work at all.  He was given a pass to go to the zoo today from his dr. what a surprise that was for him. we had a good time.. very cold.. but a really good time... this evneing and tomorrow we will just hang around the Ronald Mc Donald house and Then friday we will head across the street for surgery.  He has been so brave and such a trooper i am so VERY VERY proud of him. he will be in the hospital 2-3 days... We will be in Milwaukee until at least Tuesday.  We have met some truly amazing people, makes us miss are wonderful family and friends back home.  Please pray for the other families we have met too... MEME ( 2 yrs old, open heart surgery today) and Baily ( 2 weeks old, stomach was clear up in her chest had surgery and recovering now)
I have had such a chance to share my faith while I been here. Its been a good oppourtiunity for me, even tho I am tired and weary God keeps His hand up on me and contiunes to help us through. And I m soooo blessed!

RonAld mc Donald house
C/o korbin Swenson
8948 watertown plank rd
Milwaukee wi 53226

We will be here till Monday

Feb 8 2011 ~ Update 4pm

What a last few days its been.. our morning started about 3am with them removing the gi tube from his nose. Korbin had his scopes down this morning.. the scoped both upper and lower.  the lineing of his colon looks GREAT no tears or thinning. However Korbin under went a 5 hour moitlity study where he had 36 sensors placed up in his colon.   This showed that Korbin has a " Mega Colon" which means Korbins Colon is the size of an adult!  It is very streched out both vertical and horizontail due to the constipation. It also showed about a foot of Korbins lower colon is not working at all! This is where most of the costipation is taking place.  We will meet withthe surgon at 9:30 tomrorrow morning (wednesday) where we will come up with a date and time for them to the placement surgery.  Which they will put a tube in his lower colon  and focrce liquid into it everyday, like we had talked before. If this dont work, then they will  go in after a year and remove that section of the colon. Korbin is very tired tonight...please pray that he continues to do well with doc staff... he really took to this one nurse yesterday and today.. he even told her... " see ya later hot stuff"  lolololol  so on that note we are going to play.. this ronald mc donald house is amazing.. i been trying to up load pictures but having trouble... thank you all so much for youtr  support ill post again tomorrow after we meet with surgons... <3

This was Korbins Favorite Nurse Sarah... when we left he said.. " see ya later hot stuff"   :)

Korbin is out of surgery and doing his 5 hhour picture study

Korbin is in getting his scopes and biopsies done now

Korbin is doing well. Has had a very big day they placed a tube down his nose to his stomach to force golyte into the bowls to force out the poop
He has truly been a trooper! In the morning they will scope him from both ends and do biopsy's and then place a sensor in his rectum and monitor that for 5 hrs those 5 hrs he will not be able to get out of bed. He had a wonderful nurse today name Sara she was absolute amazing! His room is on the 11th floor what a view of the city ! Thank u for ur prayers '

MAde it

We mAde it safe. Korbin is frustrad with how hard the bed is lol
Lol. It's a beautiful
Place. Very big 3 floors! I'll update more
Tomorrow after doc appt @ 9. The hospital is straight across the street !

Feb. 5 2010

Its been a busy morning already. Korbin has been up since 4:30AM! He  got really quiet a little while ago so I went looking for him.  He is my favorite lil stinker! He dumped the whole suitcase out and was "hiding" in the suitcase. If he could have figured out how to zip it to really hide from mommy, he would have. :)
He told me a story this morning about a king and his castle. He has never been able to tell me a story I was very excited for him to tell me.  He knows we leave for Milwaukee tomorrow, he asked if we could take the airplane, I told him no mommys suitcase is to big.. he says.. " oh i see" LOL  cracks me up.. he is really focused today!!! :)  Please say a lil prayer today for mommys nervous.. my stomach has been in quite the knots this morning.. Then pray for korb has he has no idea as to what his little body is going to go through.  We serve a Mighty God!

Friday Feb. 4, 2011

Its been a rough week for Korbin, his bowls are so full he has been throwing up.  I am ready for this trip, nervous, but I am ready for Korb to feel better.  He has a new passion this week, his "tent" he spends ALOT of time in there this week. Very comforting for him.  Please pray for Korb that his nervous will be calm as he meets the doc and as they place the tube down his nose, he will not be put to sleep for this part of it.  Also the dr called yesterday and they have decided to do one more test on Tuesday morning, where they will place a sensor tube ( he will be put to sleep for this part) in Korbin and watch it for 5 hours, ( will slowly wake up for this part) they will have him eat a high fat diet and watch the sensors. pray for comfort for him.  I will keep you posted as I know more! thank you so much for your love and prayers!

Sending Greeting Card to Korbin

 Here is the website you can email Korbin James Swenson a greeting card while he is in the hospital.. they print it out and bring it into him.
http://www.chw.org/Applications/PPF/DocID/25406/GreetingCards1_Display.asp

Korbins Surgery is Feb 7 2011

So I have decided to use this some what as a blog for korbins care for the next few months.
Korbin will have  surgery in  Feb 7 2011 in  Milwaukee Wi  at the Childrens hospital.
  He will be having a Cecostomy Placement and Antegrade Enemas.
This site explains what Cecostomy  Placement is
http://www.cecostomy.com/Introduction/cecostomy.htm
Antegrade Enema operation (ACE)
The antegrade continence enema or ACE operation is used to wash out the colon. An opening to the colon is made in the abdomen through which the enema or wash can be administered.

They process of this will take 3 days to finsh.. Where he will be in hospital for about 7 days. As I get more informaiton I will fill you in on it.
Long term goal is for him to be able to have nerve feeling in his rectum again.