Jan. 17. 2012

Well its been a few days since I have posted...  Korbins ostomy bag has came off in the night 3 nights in a row now! Its been very frustrating! Yes I have hit the point of being totally frazzled, but I just keep moving on. Korbin has been such an encouragement to me through all this!! Hes the one going through all the pain and he has not complained about it! I know it has bothered him, however he just laughs when the dr ask him if he hurts anywhere!
Tomorrow Korbin will have his first day back to school! He will only go for the morning. I am really nervous but excited for him! He is very excited to see his lil friends he has missed them so much!!
Being Korbins Mom has taught me alot of new things, specailly that I can do "nursing skills". Its been an intreasting ride learning all the medical stuff I have learned, and to hear Korbin us the big medical words is neat to! He really knows whats going on with his lil body he is so smart!
Please pray his stoma ( ostomy site) will not hurt and he will have a good day at school tomrrow. Also pray as we approch Feb 6 that his lil "pipes" will be healed and he will be able to have the next surgery.
One more request please pray for me as I have started back to school full  time today, my work load  is heavy this sesemster. I am very excited tho because it is "group therapy and theory of counsling" classes! Just getting closer to being a counsler! :)

This picture is at the McDonalds in Milwaukee, and Korbin said "mommy look  juicebox"

Jan 13 2012

Goodness that was a “quick trip” to Milwaukee.

 This last week Korbins stoma ( the place that they made for him to have the ostomy bag) has been bleeding.  He has had a very low fever of 99.9  I took him to Burlington Hospital but they wouldn’t treat him they told me to contact Milwaukee ( which I am very upset about). Luckily we already had an appt for a follow up from surgery.   So we seen Dr. Calkins on Thursday, he is such an amazing surgeon! He walks in and says “ hey korbie doodle how ya doing bubba”  He is sooooo personable!! Just really blessed to have him as our surgeon!  They did a quick “surgery” right in the office; they removed a layer of skin because korbins poop was eating way the good skin. Then they put a barrier on it, hopefully we caught it before infection set in.  Dr. Calkins said that Korb is recovering very well for everything his lil body has been through. So our next trip will be February 6, he will go in for major testing to see if his “new” colon is going to work.  IF it works and no leakage then Korb will have surgery on February 7 and they will reverse the stoma and he will no longer have the bag!!  Yes we will still have to worry about bad bacterial infection for about another month, because Korbin was exposed to so much bacteria when it leaked the first time.  But Dr. Calkins said” Korbin is a real fighter and I don’t see that happening”! J

On the way home tonight, we stopped in Monmouth and seen my brother, Korb got to have a little tractor ride, man he was soooooooooo excited! Thanks Uncle Cheesey you the best!! J

Korbin will get to start back to school this week doing half days! “YEAH!!!!!!!   He is ready to be back with his lil classmates he missed them so much!

Well I better get him tucked in for the night, he has had a very long snowy day! Thanks again for your support, love and prayers!

Jan 11 2012

Just a quick post this morning, its Jan. 11. 2012 We are getting ready to head to Milwaukee. I had Korbin in burlington ER last night because of low grade fever and bleeding around stoma. Dr. Calkins Called and wanted to check up on him and see how he was doing kinda werid how this stuff surfaced. Really frusterated with the Burlington ER they told me to just " call milwaukee and follow up with them" and " you be better of going home and changing his dressing, by the time I order it you could be home and have done it twice" AGH I have lost alot of faith in them. I will keep you posted as much as I can...
Right now.. we got to hit the road!!

Jan 4 2012

Well its been a few days since I wrote a blog….. Ever since we been home its been busy busy or trying to rest. Korbin is recovering well, he is still very tired. He has pain, but tells me he doesn’t, I can see it in his eyes, he tries to be so strong. We went to school today to see his little classmates, boy they had LOTS of questions for me after they  almost tackled Korb to the ground.. It was really neat to see them interact act with Korbin and ask the questions, they were really concerned about him!  He will start back to school next Tuesday and do half days, we will see how that goes. I am just so blessed that we are home and God has placed his healing hand upon Korbin. Please pray for all our little friends that are still at children’s hospital and Ronald McDonald House, they  have been so amazing and support of us!  Also Feb 6 We will head back to Milwaukee for another surgery. They will reverse his ostomy site, I am praying this time comes quick. Every time I change it he winds up getting sick. HOWEVER I think I had a break through tonight, I tried something different but was able to save the bag and he didn’t get sick on me!  We will try again tomorrow and see how it goes, I found out today the bags are $64 for 10 bags…  I will be trying VERY hard to save them where I can!!! I couldn’t believe how much they cost! Anyway, Just wanted to thank you so much for your support and prayers over the last few weeks, it has been bumpy ride, but we made it through  were not completely out of the woods but we are truly on a better path…

WERE HOME!!

Well we got to leave the hospital on Sunday, upon the Dr. Calkins learning that I had been changing Korbins ostomy bags and really attentive to Korbin, he said that we could go on  home and not have to stay at Ronald McDonald House.  Korbin slept very good in his own bed last night, only thing is that his ostomy bag popped off in the middle of the night.. We have spent the day over at mom's, she took Korbin for napolies, that is his most favorite and his favorite waitress was there. Were bouncing back slowly, going to take a little time, he will stay home from school this week and do half days next week. thank you for all your prayers and support!

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..