Tuesday Noon (06-30)

Kade is now without his breathing tube!!! Yeah Buddy!! He is breathing great on his own but they plan to watch him closely for the next 6 hours to make sure he stays that way. His eyes are opening more and more and he doesn't have near as much of the glazed over look in them.

He looks much more like our Mr. Kade

Tuesday Morning (6-29)

Today marks the beginning of our 4th week here. The last 21 days have been long and hard. We have experienced every emotion imaginable. As we look forward, we are still unsure what the future holds for us. Kade will let us know the path his recovery will take. All we know is that we are in it for the long haul, and everyone who has rallied around us has made it easier to get through these days.

As of now, we are still on track for extubation (getting off of the ventilator) today . They are waiting for labs to comeback just to make sure that levels are where they should be. Kade continues to spike fevers, but then they go away almost as fast as the come. They will not be sending anymore cultures today, since they just sent some yesterday, and nothing has grown. Fever can come from a multitude of things, so they are just keeping an eye on it and treating with Tylenol when necessary.

Kade still does not like to give up veins! Yesterday they looked for a good vein to put a PICC line in, but no luck. His Central line works well, but it would have been nice to have a different access point since he is now off of the catheter. They will make do with what they have.

In preparation for extubation, all sedation meds will be turned off, but piggy backed by another medicine that is short acting. We they are ready to pull the breathing tube out, they will turn the med off and let Kade wake up. They need him be awake so he will remember to breathe on his own. Everyone is pretty confident that he will do fine. He already breathes over what the ventilator is set at, and has for many days now. Kade will be started on Methadone after he is breathing on his own to help with withdrawal, it also lasts a little longer than the current pain meds he is on.

The next couple of days will be the calm before the storm. We pray that his little body does well as it is required to breathe on it's own, and that side effects of being taken off of pain medicine are minimal so that he may continue to concentrate on healing his belly and breathing on his own.

Monday Morning (6-28)

Kade had a very good day yesterday. He was able to get rid of a few of the extra lines connected to his body. They removed the catheter that has been monitoring his kidney output. He now uses a diaper like most kids his age to go potty. The nurses still weigh the diaper after he is changed to get a accurate number on what his output is for the day. They were also able to remove a line from his left arm that was a real time measurement of what his blood pressure is. They are now only checking every hour with a arm cuff. It makes us a little nervous not to be able to see exactly what his blood pressure is. We have gotten to used to watching his numbers like a hawk on the monitor over the last 3 weeks. However, the nurses have told us that we only need to ask and they will be happy to check the old fashion way at any time we like. The last line that was removed was monitoring pressure in the bladder area.

While Kade continues to improve he also keeps everyone guessing here as well. He still has a fever that spikes every once and a while. The doctors have some concern that he may have another infection. Taking away the lines will help in the process, as any entry into the body can be an infection site. Today they plan to continue to wean him down on the ventilator with the hopes of getting him off it on Tuesday. Another big step today will be that Kade is getting a PIC-line. This will replace the the main access that he has in his femoral artery in the right leg. The PIC-line will be a more permanent access point for the medication, blood draws and any other test that they need to run. He won't have this line forever but it can stay in for very long periods of time without the higher probability of infection at the site of entry.

All the nurses and staff have been so nice. I think of them more as Angels watching over our little guy. We have really gotten to know them well and shared a lot of ups and downs with them. Quite a few of them have really become attached to our little guy and rumors of fighting for dibs on who gets to take care of him for the day or night have even reached us. One of Kade's angels said that helping assist to get Kade into his parents arms on Saturday is why she comes to work. She lives for those moments.

We pray that he stays on the road to recovery and continues to show signs of improvement.

Sunday Morning (6-28)

Good Morning all! Kade had a pretty good night until about 4 am when he became pretty agitated. The nurse gave him some additional pain meds and he seemed to calm down. His lungs are about the same, a little rattly, but the Dr said that getting off of the vent will help that. I have heard that Tuesday is the goal to extabate (get off of the ventilator) but that is not set in stone!

As you read in the previous post, I was able to hold Kade yesterday. It was like holding him as a newborn. I could have held him all night!! Hopefully the next time will be sooner than later, I will be patient until then.

One thing I noticed, and wanted to mention, I do have other clothes here! :-) I see that both pictures we have posted, I seem to be wearing the same clothes. I didn't want people rushing up here to bring me a new set of clothes!! Those photos document the 2 times I have held my boy in 19 days.

Today's goals are to keep Kade comfy. We also will say goodbye to Dr. Worth, a surgery resident, who has been so kind to us and taken excellent care of Kade during all of his procedures. We wish her only the best, and pray that her skills will help other families in the future as she has helped ours.

Saturday Evening (6-27)

We had another great day. Kade is now down to 26lbs. He keeps getting closer to the normal weight of 21lbs. Allison and I are so sure that he has gotten taller over this whole process. He just seems so big. Surgery stopped by today to change the dressing. They said it looks like things are processing nicely. Allison was able to assist in giving him a bath today she had a lot of fun helping. Kade is still running a bit of a fever but nothing has shown up as an issue on any of the tests yet.

He scared the daylights out of daddy last night when he somehow manage to take off the stoma bag on his own. I ran like the wind to find the first nurse I could. Of course the nurse got a good laugh out of such a worried father and she assured me that he was fine and the problem was easily fixable. From that point forward Kade is now swaddled with an extra blanket around his arms and tightly tucked in underneath him. I'm pretty sure my little Houdini will find a way around it, but for now it seems to work great to keep him safe and me from having a heart attack.

We were able to share a very touching moment today when one of the nurses asked if we would like to hold Kade, Surgery gave the green light this morning to do so. The nurses had to get approval from the Doctor on staff as well. After guidelines were set from him we started the process. It took a while for the nurses to get Kade ready and move all the lines and equipment within easy reach from one side of his crib. Three nurses in total helped to place him gently into mommy's loving arms. We both wept tears of joy to see our Mr Kade back where he belongs. He opened his eyes a little more while mommy was holding him and seemed to have a more secure and calming feeling about him. We were on cloud nine and knew that the Lord had given us a great gift today.

Hanna was invited to take a special tour of the ER while we were getting Kade in mommy's arms. She was so excited to see Kade in a normal spot and smiled ear to ear when she saw his eyes open.

Thanks to all the Nurses and Doctors had helped to make that moment possible today.

God Bless!

Friday Night (6-26)

We are all back together again! Troy and Hanna came back to Omaha this afternoon after going home last night. Hanna went to school today, and Troy took care of some things in Lincoln, like going out to lunch with his work buddies :-) I hung out with Kade and watched his blood pressure dip below "acceptable levels." This was frustrating to watch, but my anxiety was lessened once I learned it was being caused from a new sedative he was started on. The new sedative is working well, and his blood pressure is good!

At about 5pm they finally pulled his OG tube out. Good thing they did, otherwise I was going to let Kade take care of it!! I had to pry his little fingers off of it twice, just shortly before the nurse came and removed it. He definitely still has his determination and spunk! Kade now sports the latest in feeding tube fashion. It is a beautiful pale yellow, with black number accents going directly through his nose and down into his stomach. It has continuous Similac running thorough it at the impressive rate of 1 ml/hour! I have not heard of a schedule yet, but I would assume that the rate will increase rapidly once he lets us know his body is ready. He did have a little poopy diaper today, a wonderful sign of progress!!

All in all today was a good day for Kade. We look forward to getting more food in his belly, lungs nice and clear and him off of the ventilator. As I write this, I think about how great it will be to get out of the PICU, but am sad that we will not get to interact with the wonderful staff on this floor on a daily basis. They will always hold a special place in our hearts!!

Friday (6-26)

Kade just got moved back into his crib. He had been on regular bed this week for easy transport down to the OR. Surgery was pleased this morning when they saw bile in his stoma bag. They would like him to start eating again, very slowly of course, 1 cc/hour. It has not happened yet, but I would assume that once they put the feeding tube in though his nose, they will pull out the OG tube from his mouth, which sucks stuff out of his stomach. He needs more calories for all of the moving he does! He is finally resting. He goes through spurts of agitation which is mostly just the process of him healing and becoming more aware. Unfortunately, they have had to up on his sedation medication to help keep him calm, so we are not getting to see his eyes too much today. That is fine, as long as he is comfy!

We have a new neighbor today, a little baby that just had heart surgery. We pray that her little body recovers, and all the children that are sick continue to heal so that they may grow up to enjoy all that life has to offer.

Thursday Morning (6-25)

Kade has an awesome mohawk this morning! He got a good bath, and his hair done by Nurse Kelly.

Last night he was noticeably uncomfortable and very agitated. His pain meds have been upped and he is also receiving Ativan and Morphine in addition to his continuous drips of Fentyl and Versed. I cannot imagine the pain and discomfort he feels from his belly, it is hard to watch, but I know that the drs and nurses are doing all they can to make him comfortable.

Today is all about healing and comfort. It is really amazing at how well Kade is doing. The drs and nurses have begun to talk to us about weaning the ventilator and narcotic drug withdrawal, both of which will not be fun, but obviously necessary! The days to come are going to be trying, as Kade struggles to understand what is going on. To wean the vent, Kade needs to be weaned off of sedation drugs to make sure that he is ready to breathe on his own.

Troy, Hanna and I are planning on going to the zoo today. She has been so good during this whole ordeal, we decided it is time for some fun!

As always, thank you to everyone for your prayers and support. We are blessed in so many ways!

Wednesday Morning part 2(6-24)

Kade's surgery went great. He tolerated everything with ease and is now back in his room. They were able to close the muscle but the skin is not quite all the way closed yet. The next 6-12 hours are very important ones for Kade. Over the last few days the majority of water weight he lost was from his wound-vac. Since he no longer has the wound-vac now they want to make sure that the pressure in his belly stays low and his kidneys do the majority of the work. If he starts to get to much pressure they may have to reopen him again.

He is resting well now and moving a little every once and awhile. The doctors are doing rounds right now so hopefully his goals will be small and attainable today.

Wednesday Morning (6-24)

Kade had a great night again. He has not needed any additional maintenance fluid for over 24 hours. He is looking better and better each day. The little rascal is really moving his arm a lot when he is awake. Last night we were talking to the anesthesiologist and he pulled apart his breathing tube, and yanked off his EKG leed. It shows he has a lot of spirit but it kept mommy up all night wondering if he would do it again. Kade was able to come off the medication that helps to regulate his blood pressure. He seemed to really like that medication and after a few hours without it he would have to be put back on. But so far its been 5 hours and he is doing good.

We kissed our boy and sent him back to surgery this morning. The surgeon stopped by at 7 this morning and talked to us. He is very pleased that Kade's bowels are working. He said that Kade's body is giving all the right signs to close him. So we are hoping that this is final surgery that he will need for awhile. Which is good, because this morning one of the staff here asked us if we have a child in surgery. We said "Yes, under the last name Loseke". She replied back without even looking at her charts "Oh, yes Kade's parents." We know we have been here to long.

God bless all of you for everything. Your prayers, cards, gifts, and words of encouragement have made this journey we are on so much easier.

. . . . meanwhile, we pray . . . .
"Thanks Pastor, this line has really helped"

Tuesday Night (6-23)

We have POOP!!!

We never thought we would be so excited for pee and poop!! This is a wonderful sign that everything is working the way it is supposed to. Some other events of the day include Kade swinging both of his arms around. He has become easily stimulated and will open his eyes, wave his arms and his heart rate and blood pressure shoot up! We try not to get him too excited, as he is still pretty sick and needs all the rest he can get.

We are still on schedule for surgery at 8 am tomorrow. Once again, we pray that surgery goes well, and we will be closer to taking the next step in Kade's recovery.

Tuesday Morning (6-23)

Kade has taken another big step here in the PICU, he is sharing a nurse!! Usually he has a nurse dedicated solely to him. The doctors are also spacing out the time between labs and vitals, which is a positive sign of his improving health. He has been opening his eyes more and also tracking as we talk to him!

The Surgery team just stopped by and confirmed that Kade's surgery is at 8 am tomorrow to close his belly. That may change once the surgeon gets in there, but he was pretty positive yesterday that it will happen. Tomorrow will be Kade's 10th surgery in just 16 days. After Kade's belly is closed and his pressures are good, the next step will be to get off of the ventilator and out of the PICU! These goals are withing arms reach!!

Monday Morning (6-22)

WONDERFUL NEWS!!!!!
The surgeon was extremely pleased with the way things went this morning! He put the sutures in place and is planning on completely closing Kade's belly on Wednesday!! He also said that the bowel looks great!! There are not enough exclamation points to show how excited we are to hear such wonderful news!!!!!!!!! :-)

Kade received a new Central line yesterday. They ended up placing it in his Femoral Artery, mostly to eliminate any questions about infection from the original, which was placed in under emergent conditions when we arrived here almost 2 weeks ago. This new Central line has 3 access lines, which eliminates the need for other IVs. He was off all medications for about 45 minutes while they switched it out and tolerated it very well.

We are so thankful that things are improving daily, and that our prayers for recovery are being answered. Thank you all!!

Monday (06-22)

Kade is in surgery again this morning.   He lost 3 lbs pounds over the weekend.  We are again praying that everything looks good on the inside.  Kade is looking much better.  The fluid on his skull is gone and his face looks great.  When we got into the room this morning his eyes were half way open and were staying that way for long periods at a time.

We are hoping that things are good and that they can start to close the wound up.

Father's Day (6-21)

Happy Father's Day to all! Troy is having the best Father's Day! Kade is peacefully resting and Hanna is being such a sweetie! Kade had a great night, and also got a bath. His hair needed a good washin'! It is clean and soft again. Everyone comments on how good he looks--YEAH!! He has lost 2 lbs, it is a noticeable difference. Surgery is still on for tomorrow. We have enjoyed these last couple of days of rest for his little body, but we know that surgery tomorrow is a step forward towards his recovery.

Kade's plans for today include getting a new Central line. He had "cut down" IVs from Lincoln in both of his ankles that have both now failed. The nurses were impressed at how long they lasted for as much as they have pushed through them. The new Central line will have 3 access points, where as the current one only has 2. They will probably put the Pick line in tomorrow while in the operating room. Kade certainly does not like to give up his veins!! The nurse last night tried 3 different spots for a standard IV with no luck. They hate to use him as a "pin cushion" and so do I, but they need more access for all of the meds that he requires.

Grandma and Grandpa Loseke are here today. Uncle Scott and Aunt Audrey are planning visits also. Troy and Hanna are planning on doing something special for the day, but they have not yet decided what.

Thank you again for all of the prayers, letters, cards, gifts and FOOD!! We are truly blessed to be surrounded by such wonderful people. We appreciate it more than words could ever express! Kade is one lucky little boy to have so many pulling for him!!

Saturday Evening (6-20)

I think I got my fathers day gift early this year. Kade opened his eyes again, they have been closed since Thursday. I ran around the room turning off lights and closing shades just to make it easier on him. Such beautiful blue eyes. I could tell that he he was struggling just to open them, but he wasn't about to stop trying. We got about five 3 second peeps on those baby blues. Now he is resting peacefully.

Truly a gift from God.

Here is a video from the day Kade was born. Big sister was so proud! Seeing Kade open his eyes today reminded me of when he opened them for the first time.

Saturday Morning (6-20)

Kade had another good day yesterday, and a lot of rest for all. The doctors have added another medication that should help to draw the fluid from the tissue and get back into his arteries. We are hoping that Kade can lose the 5 lbs by Monday, but we do not want to push him too hard with medications and cause more problems. Everything seems to be done at a snails pace and for good reason. The surgeon did tell us that the sooner we can start the process of close the wound the easier it is. There are so many double edge swords to dance around. We are putting it all in the Lord's hands.

Hanna came down yesterday and we all had a great time. We were able to laugh and enjoy the day. She was so excited to stay at the Rainbow house she says she wants to stay for 10 days. The sad reality is that we will most likely be here for all of that and more. We were able to meet with someone from Child Life yesterday and talked with Hanna some more on why Kade is here. We did take a huge step and decided it was time that Hanna got to see her little brother. As parents we were worried that it may lead to a lot of questions from her about what everything is and why he needs all these tubes and machines. As always, we were totally shocked when she blew him a kiss, told him she loved him and just wanted to touch his toes(tickle mostly). She was more concerned with what the "tape" was around his mouth and on his chest. She really has done well with it all. She likes to talk to the nurses that are helping Kade and they have been so nice to answer any questions she has had and make her feel at home.

Kade has been moving a lot and Mommy has been working out his arms and legs trying to keep him limber. When we are in the room and talking around him he starts to move a lot more and faster. He knows we're here and that makes us feel so good. We are praying that we can maintain this path and that everything is healing the way it needs to.

Friday Morning (06-19)

Another good night of rest for Mom and Dad. While Kade was awake last night, his blood pressure was good, but as soon as he fell into a deep sleep his BP dropped, so he received some fluid. His chest x-ray still shows some extra fluid, but we already knew that. His lungs sound better than yesterday after continuous albuterol treatments for most of the day. They are now down to every 2 hours for breathing treatments.

Dr Azarow, one of Kade's surgeons stopped by this morning and said that he needs to loose about 5 lbs before he can put the retention sutures in. Kade was weighed last night. He is now about 31 pounds. His normal weight was 21 before everything started. They will be altering his meds to try to get some of his extra fluid off, and mom will be working him out!! They have said that movement helps push the extra fluid out. Troy thinks we should start a "Baby Craig" diet :-)

We are waiting for rounds to start, hopefully we will be one of the first after the heart kids. Grandma and Grandpa Loseke are bringing Hanna up today and should be here about noon. We look forward to having our girl with us for the weekend! The Rainbow house offers free passes the the zoo and children's museum, so we will try to get to one of those this weekend with her.

I cannot speak highly enough about the Rainbow house!! The facility and staff there are amazing. It is such a relief to be able to get a good nights rest and be so close the the hospital. I may actually be getting more sleep these days than before Kade got sick!

Hoping for another blessed and boring day!

Thrusday night (6-18)

Kade had a great day! He tolerated the wound vac change well and has had great numbers all day. He wiggles almost constantly and even opened both eyes a little while I talked to him. What a wonderful feeling to have him look at me and squeeze my finger all at the same time. I am sure that his sight is quite fuzzy, but I know he knew that I was there.

The surgeons will wait until Monday for the next procedure. The plan is to put some retention sutures in to begin the process of pulling the muscles in his tummy back together. Each time the wound vac is changed out, they will "tighten" the sutures a little more. After Monday, we assume that we will be on a 72 hour schedule for wound vac changes. We are glad that Kade will have a good 3 days before they mess with his belly again!!

All in all today was one of the best we have had since arriving, and we pray that the weekend will allow for a lot of rest and healing!

Thursday Morning (06-18)

Kade is doing well. We did get a call at 4:00am again about his blood pressure being down a little bit. The nurse had a little talk with him and a gave him some more fluid and all was fine. He is still moving and around a little bit and has been having good stats the whole morning. We are still waiting for the morning rounds to see what the goals for today are. We do know that they will be changing out the wound-vac and looking to see how things are going inside. Not sure on the time frame or if they will do it in his room or in the OR.

We'll let you know more after they are done.

Wednesday night (6-17)

Today was boring and exciting all at the same time! He opened his eyes!! They lifted him up to get a chest X-ray and he looked right at us! He has been moving his arms, legs and face a lot. The movements confirm that his brain is functioning well. The doctors have never thought that we should be concerned about his brain, trust me I have asked multiple times!

Kade did well with his blood pressure except for needing some fluid around 2:30. They are still working on weening him off of the dopamine for his blood pressure, but currently that is not a high priority. Urine output is steady, even with discontinuing the diuretic yesterday! He will have his wound vac replaced tomorrow around noon. They do not intend to do any exploring, just switch out the dressing.

A couple things about yesterday's surgery. They to put a stoma in, which has a section of his bowel outside of his body in a bag. This is for drainage purposes as well as nutrition if needed. Kade also did not tolerate switching ventilators well. They had to suction out a lot of mucus to get him to breathe properly. He is back on a conventional ventilator, but initiating almost all of the breathes himself.

Thank you again to everyone who is praying and thinking about Kade and our family. Everyone has been so kind and generous, we certainly would be lost without you all!

Wednesday morning (6-17)

We have officially been here one full week, and we are still unsure how long we will be here. We would love to have a timeline, but it is impossible to predict what the days, weeks, or even months hold for us. Just as before Kade got sick, he is calling the shots!

We had a pretty uneventful night. We asked the nurse to call us if his blood pressure dropped, which it did and she did, so we come back to the hospital at 4am. We just wanted to make sure that the fluid they gave him continued to work, unlike yesterday when it only worked for about 15 mins which led them to go back to the OR. He responded well to the fluid and his pressure has been good ever since. Troy and I have both already taken a nap today! The staff here are so great about making sure that we have a place to rest.

We are waiting for rounds to see what the day holds. As of now, he is moving almost all of his body. They may put him back on the paralytic if he starts to move too much, but they like to get it out of his system so he doesn't build up an immunity to it. He is continuing to make a lot of urine! This is an awesome sign that his kidneys are better, and it helps in so many other ways. They continue to "dance" with nutrition and meds. His blood sugar spikes quite often, and he is off on other nutritional levels. He does not have diabetes, his little body just needs to begin to work properly again.

The surgeon that performed the operation yesterday just stopped in and is pleased with what he sees. He stated that he would like to get on a schedule of every 3 days for the wound vac change, instead of every 2 days.

We will post again after rounds, we look forward to a calm and peaceful day!

Tuesday Night (06-16)

After talking to the doctors today we have a better understanding that whatever caused the in initial intussusception was most likely what caused the infection in small bowel as well. They have put him on a stronger antibiotic that should cover a wider range of infections. We have had a day full of trials and tears, and we know that this rollercoaster we are on is far from over. We are thankful for every second we have with our little man. Right now Momma is reading him a book and feeling his toes move. Oh, by way the way, HIS TOES ARE MOVING!!!! Oh the joy to see his little piggies move. It's really a sweet end to the day.

Hanna came down last night and spent some time with us. She even stayed with us at the Rainbow house. She so loves her little brother. We were sad to see her go tonight, but it really helped us through the day to get a blind-sided bear-hug. They let her feed the saltwater fish this afternoon (Nemo, Dory, and the whole gang are in the tank). It's been a week since we started this journey at the Children Hospital. We have met a lot of great, caring, and hopeful people.

We are blessed to have another day with our son, as another family here prepares to say goodbye to theirs. We do not know much about their situation because they do not speak English, but the emotions we shared are universal. We pray that they find peace at the end of their long journey.

Tuesday noon

Kade is out of surgery. We have not seen him, so I cannot comment too much yet. Just wanted to let you all know. What I do know is that they found that his lower bowel is infected, good news is everything is still viable-Thank God!!

Tuesday Morning (6-16)

Kade is currently in surgery again. They are looking for a reason why his blood pressure cannot stabilize, he also has had a low temp ranging anywhere from 97.0-98.4. Please pray with us that our sweet boy does well as the surgeons search for answers.

We will let you all know when we know more.

Monday Evening (6-15)

Things are looking up. The wound vac was replaced today at about 3pm and that had positive affects on Kade's blood pressure, oxygen level, and heart rate, all of which are with in acceptable levels. Initially, it was not sealed well and was not "vacuuming" but they were able to patch it so it would work properly. The surgeon said that his intestines looked a little better, compared to the comment he made on last replacement, saying they looked "dusty." That was great to hear!!

The rest of the afternoon has been uneventful! We are waiting for Hanna to show up with Grandma and Grandpa Loseke. She is going to hang out with us and spend the night!! We look forward to having her close to us, if only for a little while. Hopefully soon, we will get back on a schedule that allows us to all be together.

Thanks again for all the prayers, emails, texts and comments on the blog. We love reading the comments after we have posted a message. They are helping us get through this!

Monday Noon (06-15)

I think we hit another bump. Kade was so close to getting off the last meds for his blood pressure this morning, but his body didn't respond well. They upped the dosage back up and it still stayed low after an hour or two. As in the past they gave them the maintenance fluid and that helped it get better.

The doctors have called for a full ultrasound scan of his liver/kidney and arteries, and then a chest X-ray. After that surgery will be here to to change the dressing and wound-vac. I pray everything looks good on the inside and that healing comes quickly for him.

Monday Morning (6-15)

Pink is our favorite color right now! All of Kade's extremities are pink and warm!! They are still slowly weening him off of blood pressure meds, we are getting closer and he is tolerating it pretty well. He is still on his paralytic holiday, and has not shown any movement, but his pupils react "briskly" same as you or I.

The surgeons were just in, and will replace the wound vac as planned sometime today. All of the Drs have commented on how much better he looks, so that is encouraging! He is still a very sick little boy, but we all feel that he is on the right path.

OT, Occupational Therapy, also stop by this AM and gave mom a lesson on keeping our boy limber. He seemed to react to us messing with him by looking at his numbers. So far it has been a busy morning! We are waiting for rounds to discuss the plans for the day. I suppose we will continue as we have been with weening off blood pressure meds, urine output, and just keeping it boring.

We are hopeful that the week holds many small victories that allow the Drs and Surgeons to look at a schedule of moving back to a conventional ventilator and closing his belly.

Sunday Evening (6-14)

What a wonderfully boring day!!

We met with the doctors and staff this morning. It was good news. They said this is the best day he has had here. We received that wonderful news around 10:15a.m. Over lunch, Allison and I pondered the time frame that news was giving to us. We would have to say that the mass amount of prayers from churches around that time were heard. Those words have given us the spirit the carry forward and smile. God bless you all!

They are very happy with Kade's kidney output, it has been anywhere from 8 to 17ml per hour most of the day. Kade has gained a lot of weight since coming here. He started out at 21 lbs and today he weighed 30 lbs. So he has about 9 extra lbs of water weight added since Tuesday. I really thought one of his doctors was kidding when he said he would look like a sumo wrestler. He was spot on. His kidneys have a lot of catching up to do. The doctors have said that the water around his lungs and on the skull should subside as the kidneys keep draining.

They are still weaning him off blood pressure meds. I think this process could take awhile. He had to have one dose of maintenance fluids this afternoon, but as long as it's coming out his kidneys that's OK. Still no movement from our little man, hopefully soon.

Kade will get his dressing and wound-vac redone tomorrow. We pray his intestine and bowel show improvement during tomorrows procedure.

"May your unfailing love rest upon us, O Lord, even as we put our hope in you." PSALM 33:22

Sunday Morning (06-14)

Kade had another good night. They had to give him a little maintenance fluid early this morning to get his blood pressure and pulse back into line. He almost made it 24 hours without one. His little body is trying hard to balance itself as they are slowly drawing back on his meds. The nurses call it dancing. When they draw back on one they sometimes have to readjust or give more of another to get him where he needs to be. He keeps the staff busy and on their toes, but they always have time to softly caress his hair and talk to him. For now his dance card is full but we pray that soon he will give these great ladies a break.

Allison and I have decided that we will now start giving our blood to the blood bank on a regular schedule. No excuses just planned dates. We would like to thank anyone that has given blood in the past. It is such a small but amazing gift to give. And a huge thank you to all the O positive folks that give. Kade has needed blood, plasma, and platelets fairly often.

We have tried to create a loving atmosphere in his PICU room. We are in the process of putting up the wonderful posters, and have put lots of pictures on the wall. Everyone loves to see the little guy as he was before this. Each nurse and doctor seem to have a favorite picture of him and we love that they can connect and tell story's about their children as well. Each night the nurse will write a little note from Kade for us, letting us know how he's doing and what changes were made. It's so cute.

For now things are good and boring and again.

Gods blessing to all!

Saturday Evening (6-13)

"An uneventful day is a blessed day", says Aunt Suzi. We are so thankful for the boring day that we have had today! The surgeons replaced Kade's wound vac and dressing today and he tolerated it well. He has been weened off of one of his many meds to maintain his blood pressure, and has also not needed what they refer to as "maintenance fluid" for the past 18 hours! This good because right now Kade has to much fluid that needs to get out. So much that it has started to fill in his left chest cavity, and on his skull as well. They take X-rays every morning at 4am so they can gauge the progress easily.

To help combat these problems the Dr has placed him on a continuous drip of the diuretic, which seems to be working well. He is peeing, but we need him to go a little more. Kade's hands and feet are having a hard time with all the drugs. In days prior they have changed from pink to purple quite often. Today they stayed mostly pink with slight color changes. Kade has still not moved yet, but they know he will, they just don't know when.

Hanna came to see us today. It took some time for her to warm up to us, but by the end of the day we were back to laughing and reading books and just being silly. It was a great to have that interaction with her. We did talk to her about Kade and that he is very sick. We gave her a tour of the PICU and all the cool things on the walls and ceilings. She was able to talk to Kade's nurse whom won Hanna's heart with some princess stickers. We didn't take her into the Kade's room, but she was able to see all the family pictures on the wall and all the pictures posted up that she made for him. She could see Kade's crib but Kade was covered up with blankets so we couldn't really see him. Which is good because is still not looking like himself and all the tubes and IV lines might scare her.

Sorry for the inconvenience on the comment section I didn't realize that you have to sign up for an account to leave a message until today. I have changed it so that you can leave a message without having to create one. When trying to post choose the Comment as: Anonymous

We also want to send out a HUGE THANK YOU to all of the wonderful kids from Holy Savior's VBS. Pastor Koch came to visit us again today and brought a banner and a big stack of get well cards for Kade. Kade's teachers from Loving Hearts also made a banner for us to display in his room--Thanks to all the great teachers!

Another HUGE THANK YOU to all that have been praying for our sweet boy! We feel that the prayers are reaching him and us as we continue to have our small victories. We still have a long road ahead of us, and are bound to hit some bumps in the road, but for now we will be content with boring days and small victories!!

Saturday Morning (06 - 13)

Kade had another great night. Nurse Becky gave him a bath, changed his linens, and retaped his breathing tube which looked like it may have been pulling on the corner of his mouth a little. She said that the skin looked good underneath, so we are thankful for that.

Kade is still on his "paralytic holiday". There has not been any movement yet, but the doctors explained that the medicines that were keeping him paralyzed have to be expelled through his kidneys and liver. They did give him another diuretic after seeing the results from the last time it was giving. It did wonders again. It seems to be work great for him for about 4 hours and then things go back to normal. The hope is to kick start the kidneys so that they flow normally on their own.

When I got here this morning Kade's color and temp looked great. The plan is to still do the exploratory surgery later today to see how things are doing.

Allison and I were able to get a bite to eat away from the hospital last night. We talked about our wedding vows and how those words ring true. "In Sickness And In Health" While this has been a trying situation for us and has brought us to the edge of emotional breakdown. It has strengthened our bond and brought us closer together.

Friday (06-12)

Allison and I were able to get a great night of rest last night. Kade's stats were looking good and he had the same 2 great nurses from the night before. With our minds at ease we were able to get a room at The Carolyn Scott Rainbow House. A great couple that we got to know while we were here informed us about the house. The house opens it door to families and patients undergoing acute, long-term treatment at Children's Hospital & Medical Center. By the time our heads hit the pillow at 11:00 we were down for the count.

We came back to the hospital feeling refreshed and awake. The night nurses said Kade did well. He also kept up a steady 5 ml an hour output of urine. At rounds today the doctors decided to try to wean Kade down on a few medications. They are going to give the Paralytic medicine a "Holiday" for awhile, allowing Kade to move parts of his body. He is still going to be under sedation and asleep, but it would be great if he could kick me (Troy) square in a face! I so hope he does! They will put him back on it at some point, but its good to give this medication a break. They also will be giving Kade a diaredic to assist him in the urine output. All the doctors said that Kade is doing a little bit better.

The medication for the urine output seems to be working, WOO HOO!! He is outputting about 15ml a hour. Everyone is so happy about that. Keep praying for pee!!

Pastor Scheich was down today, it was great to have him here to talk and pray with us. He was happy to see such a big change in Kade's color from the first day he was here. We have had a lot of great visitors so far and a lot of big shoulders to lean on. We are so blessed to have the ongoing support from everyone.

The biggest thing we hear from the doctors and everyone here is that boring days are great days. These little bodies need time to heal and boring days are great for that. They will be opening Kade again tomorrow to see how things are going on the inside. We pray that they will find things well and healthy, and that we can soon start the closing process on his belly.

Thurday (06-11)

Kade's output of urine had increased overnight to about 2 ml an hour. Which for us is a good sign to know that his kidneys are still working. They do want more to see more, 2 ml is a very small number when compared to the input of fluids in his body. We are not in a imminent need to start doing dialysis, so that was the big win for the day.

They did have to open Kade's belly back up around noon and complete a exploratory check on how things were going inside him. During Kade's last surgery on Tuesday, they decided not to close the opening on his belly, but instead to pack it with a sponge and hook up a drainage tube so that they can try to minimize the gathering of fluids and pressure in that area. When they opened him up today the intestines were again filled with fluid and showed visible stress. The Doctors informed us that when they drained the intestines they saw large amounts of mucus tissue, so they cleaned it out. From this they seem to think Kade may have had a viral infection which may have caused the Intussusception, the original need for surgery on Monday. The good news is, the tissue will regenerate, but they needed to also let us know that there is a possibility that if the intestines don't improve they may have to remove some. A couple other good things we noticed after the procedure were the color of his lower extremities and a more reasonable heart rate.

Hanna came today and we really enjoyed spending some fun time with here. She is loving all the time with Grandma and other family. We had a good talk with her and the folks here at Child Life about what is going on with Kade and why Mommy and Daddy have to spend so much time away at the hospital. We have decided that now is not the best time for her to see him, he needs to recover a little more and maybe a few less tubes.

By the end of the day on Thursday Kade was up to about 5ml an hour. Go boy go!

Thank you again for all your support, We heard one of the doctors say that Kade has "rounded a corner" today. Oh to hear them say that is great. It's a little after 9 Pm right now and we are waiting for the rounds to here from the big group on doctors on what they are thinking tomorrow may hold.

We just finished meeting with the night shift for rounds. They are pleased with Kade's small victories today: urine output, blood pressure, feet color, and heart rate.

God blessing to all of you.

Wednesday Night (06-10)

Kade is still fighting. Today I truly understand why they said were not out of the woods. He is still a very sick little boy. He has been fighting to keep his stats up today. The staff has been great it making sure to they try do whatever they can to make it happen as well. Kade has still not had any urine output all day. If things don''t improve over the night they may have to put him on a dialysis we should know more in the early morning.


Mommy got to go back to See Hanna tonight. We are hoping to bring her up to see Kade tomorrow. This will be the first time she has seen him since Monday night in Lincoln. They have a family service here that will talk to her and get a good understanding of what Kade is going through and prepare her to see him. Kade has a lot of tubes connected he has swollen up a lot and doesn't look much like himself at all.

While siting in the waiting area today a young boy whom I had never met before came and sat down next to me. He looked up and asked me how me "Hows your son doing?". I told him that he is working hard at getting better. We continued to talk about Kade and his big brother Tyler. He was very excited that his brother Tyler who was also in the ICU was able to take a drink for the first time today. It really made me think that the small steps are what we have to focus on. One small victory and one small Battle at a time.

"Be still in the presence of the Lord, and wait patiently for him to act." Psalms 37:7

Kade's History

Hello,
Our little Mr Kade is having a very hard time with life right now. At exactly ten months after he was born he had to rush back to the same hospital to get him treated for Intussusception. This required an emergency surgery to try to resolve. We have had a lot of trying times so far and have ended up at Children's Hospital & Medical Center in Omaha to get him the best care he can have.

We have decided to keep an update here on how Kade is doing so the you can follow along with his progress and be as informed as possible from us on a ongoing basis. We have been trying to send emails to everyone we can but I'm sure along the way we may have missed some. Please send this blog to whoever you like so that they can be informed as well.

The Medical History

Kade stated not feeling well late Saturday night(06-06). He was unable to keep any food down and was very restless. On Sunday morning(06-07) Kade was taken into the ER to be looked at. Kade was treated for the Flu and sent home.

Monday (06-08)

After a lot of love and care and a few more worried calls to the ER we made our way to Monday and got into to see his Dr right way, he seemed to be getting worse and not better he was unable to keep more than 2oz of fluid down. The Dr had us go to the Saint Elizabeth's to get X-Rays and a procedure done right away to get his small intestines back where they need to be. Kade's smaller intestines were being swallowed up by his bowel. This can occur in a small percent of children under 1 years age, but very important to be treated as soon as possible.

The first treatment was done under a X-Ray machine confirmed that Kade had Intussusception. They were able to used a enema treatment to get things almost back into place, 90 percent of the way, but they were unable to complete the whole process in that manner. So Kade would need to undergo surgery to complete everything. Kade was taken into surgery about 2:30pm on Monday. The doctor was able to complete the process and also take out his appendix. At around 5:30 he was back into Mommy arms and in his recovery room. We were so happy to see our little guy. He would open his eyes and look at us a few moments at a time over the evening, and make some noises as well. At one point he even tried to crawl. We were happy to see his spirit and his eyes. He was running a temp but everything seemed to be on track.

Tuesday (06-09)

During the morning hours on Tuesday Kade had a turn for the worse in the middle of the night. His temp would not go down and he was not responding very well. The doctors had to place another iv into his tiny body to help get him more fluids. It was very touch and go. They made a call to move to him to Omaha Children Hospital so that he could have better care and treatment.

Allison and I were both with him on the way in the ambulance and he seemed to be stable until the last 5 minutes when he started having trouble breathing. They rushed him into the ER and after about an hour they were about to get him stable. They sent him right into surgery to try to determine what the cause of the problem may be.

They were able to help Kade by opening him back up to relive a lot of tension he had built up inside. His intestines are very sick and have required them to it place him on a lot of medications to help fight the possible infection. They are keeping him asleep and have hooked up everything they can to allow his body to rest and fight off anything. Right now Kade is in critical condition in the ICU. The staff here as been wonderful and taking extra special care of our Mr. Kade. They are also giving him medication to keep him temporarily paralyzed so that he doesn't try to move and cause greater problems internally or externally.

On Tuesday afternoon they did have to do another emergency procedure surgery to help free more pressure and fluids that were starting to build up inside. As of now the are leaving Kade's belly open so that they can drain out more fluid. The doctors have said that he is looking better but we have another 48 to 72 hours before we are out of the woods. We have been praying for the strength to ride this storm out. We have had a lot of family here today to help support us and a visit from one of our Pastors. Your calls and emails have helped get us through this rough time. We pray that we can get the rest we need to help with the fight. Please know that we are so thankful for all your prayers and it is truly helping to carry us through the day.

Wednesday Morning (08-10)

Kade has been stable for most of the night. Thanks to your Prayers!!!! Allison and I were able to get a few hours of sleep and that has helped us prepare for another long day. He has been a really tough guy through this whole process. He remains in a very sedated state so the he feels no pain, and won't remember anything. As the morning has progressed a few things have become a concern and they are calling in all the specialist they need to make the right choices.

Kade has been switched over to another ventilation system that does a better job of giving him a consist flow of oxygen. His arm and legs are very cold but have gaining a lot of color back. He is quite swollen at the time due to the need to give his body all the fluids it needs. He has had a big decrease in urine output over the last 6 hours. Which due to the amount of fluids they need to put in can be a concern. They are currently doing ultrasounds to find out what the best plan of action will be. One of which may be another surgery today to open up the belly area more and release more pressure that could be building up. They don't want the kidneys to be damaged or stop working.

One day at a time and small steps is the best plan. I cannot even describe to you how wonderful everything and everyone here as been. As Kade's Daddy I have full trust that every choice they make is the best for Kade and God has put him here to get my boy better. They have informed us that Kade stay here will not be short. As far as we know to could be at least 2 weeks or more.