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.