Merry Christmas and Happy New Year!!

Dear Family and Friends,

This past year has given us the chance to learn a lot about ourselves, our family and our faith. Everyday gives us more reason to be thankful than the day before. Daily, we think of all of those who touched our lives in some way this past year, be it and old acquaintance, a new friend or our loving family. Our hope for the next year is to touch your lives in the same way you have touched ours in our time of need.

We want to express our family’s gratitude to all of you. Our family, friends and co-workers were such a blessing this past summer while Kade was ill. We could not have gotten through our terrifying ordeal without all of you, and we are eternally grateful for you all.

To the wonderful staff at Children’s Hospital, thank you for saving our son’s life. Your passion, skills and knowledge came through everyday, and we knew that you were doing all that you could to make sure that Kade came home again. Thank you for being honest with us during those times of uncertainty, and including us in decisions. You all will always hold a special place in our hearts.

To the Rainbow house for giving us a home away from home, and for providing us with a meal, a hug or a prayer when we needed it most. Hanna remembers her books from the cart, and the playground where she didn’t get much time to play. Thank you for being there for us.

To Dr. Russell and Complete Children’s Health staff, thank you for being so dedicated to our family. Your gifts, visits, and phone calls showed us that you saw Kade as more than a patient. We look forward to the coming years with you as our physician. We also want to extend a thank you to all of the wonderful therapists at Madonna for their work with Kade.

As 2010 approaches, we enjoy watching both Hanna and Kade thrive. Hanna is busy growing into a young lady. She is definitely her own person! She is already excited to be turning 5 in April, and starting Kindergarten in the fall.

Kade is now 16 months and healthy as can be! You would never know that he was so sick unless you see his scars. He is walking, eating well, babbling, and developing on track like the rest of his peers. He is beginning to hold his own when Hanna “loves” him a little too hard or just plain teases him. He has even instigated a couple spats when Hanna has something he wants!

In closing, we want to say thank you again for everyone’s generosity, and prayers for our family. We hope that you feel as blessed as we do, as we celebrate our Lord and Savior’s birth, and in the coming days of 2010.

Merry Christmas and Happy New Year,

Troy, Allison, Hanna and Kade Loseke

Walking

Kade is offically walking! He is so cute with his new found freedom. He continues to eat well, and is on a good growing curve. He is also starting to talk a little, mostly saying Da-da and Ma-ma, both of which are beautiful sounds to Troy and I. Attached is a photo of Kade chillin' at his uncle lodge. He was quite relaxed until Hanna came and pounced on him :-)

Well Bust My Buttons...

Kade no longer has a button!! Yes, we have a button-less boy. The surgeon removed it yesterday and all is going well. It is only covered with some gauze and a Looney Toon band-aid. If by chance the skin doesn't close up by Monday, we will have to go in and have them place a stitch in. It is not leaking like they said it might so we are thankful that!
Kade still is hesitant about walking. He will take steps, but then drops down and crawls. He does have bruises to show is willingness to climb though. He is always so proud when he reaches the top of whatever he is conquering!
We had fun over Halloween, Kade was Roo from Winnie the Pooh and Hanna was a bride. We attended a gathering at the Omaha Children's museum that was hosted by a group called Dance Marathon. It is a group of college kids that have a 12 hour dance marathon for Children's hospital. It was fun to play and meet other families and hear their stories. The event will be held on February 19th, but the have gatherings every other month. Our favorite Surgery resident, Dr. Worth met us at the museum and she was so happy to see how well Kade was doing. We are thankful that our encounters with Surgeons are strictly social these days!!
Keep checking on us and I will try to post every now and then!
Thanks again for all your prayers!

Routine

Sorry for not posting for a while. I have been back to work full time for the past couple of weeks, and we are adjusting to our old routine, which we are so thankful for! Kade is doing exceptionally well with eatting! So well that we have not had to use the feeding tube at all this week. The surgeon said that if we do not use it for 3 weeks, we can take it out! Last week we did have to go back up to Children's to have the surgeon look at the area around the button. Troy and I noticed it was hard and something was almost poking through the skin. Turns out it was a stitch that had come undone, and it was nothing to worry about it would eventually dissolve. The surgeon stated that if we saw something blue poke through the skin we could just trim it...I said that we would just come back for him to do the trimming!! So far nothing has poked through and the area is getting softer.
Hanna was not happy when we pulled into the garage at Children's. The first words out of here mouth were "What are we doing here!?" I explained that they wanted to look at Kade's button and that we were ALL going home together TODAY! She accepted that and we were off. She didn't skip a beat when it came to the elevator, and was all over the Drs and nurses when we stopped by the PICU to visit. Everyone was so excited to see how well Kade was doing, and Dr. Trempher got a snapshot with his iphone.
Kade is doing very well at daycare, and Hanna just loves him to pieces every chance she gets. Kade has taken a couple of steps for us, but still perfers to crawl.
I will try to post weekly, but as the saying goes, no news is good news!
Thanks for checking on us!

October 5

Kade is still doing great with his eating! He struggled with drinking a little, but has overcome his initial reaction to automatically spitting it out. He loves to feed himself, but has also become more accepting of being spoon fed, which really increases our food options! He was eating a lot of peaches, bananas and puffs for a couple days until I was able to feed him regular baby food with a spoon. We are working on decreasing the need for tube feeding during the day, which allow for more freedom to move around.
Speaking of moving around, Kade has taken a couple steps!! He is definitely getting brave, and he has the bumps and bruises to prove it! He has a lot of friends as daycare that are walking, so I hope that helps encourage him.
Kade will start going to daycare 3 full days a week. I am back at work and enjoying getting back to our regular routine. Hanna is really happy to have here brother back at "Hearts" with her. Their classes are outside at the same time, so they get a chance to interact with each other.
We are looking forward to a month without Dr appointments! Our next visits will be in November when we see the surgeon for our followup, and Dr. Russell for Kade's 15 month appointment. Thank you for continuing to check on Kade's progress!

Eating!!

We have been very busy at our house these last couple of weeks, a lot has changed!! The best news is that Kade is eating!! He is really into finger foods and wants to do it all himself. We still give him formula via the feeding tube to make sure that he meets his nutritional needs.
The last time I posted, Kade had just had another swallow study. The days following that he was vomiting 3-4 times a day. We treated it as a virus, running Pedilyte continuously for most of the weekend. Then on Sunday night we offered him some banana and he started to put it in his mouth and swallow. He didn't gag at all! We were so excited we ended up giving him the whole thing! He has been eating ever since!!
Today is Kade's first day back to daycare and my 2nd day back to work. I have only called daycare twice so far :-) When I spoke to the teacher after lunch, she said that he had fun when they went outside and he ate a good lunch, both a big relief for me! We will continue to go to Madonna for therapy 3 days a week for now, so we are easing back into work and daycare slowly on Tuesdays and Thursdays.
Thank you to all of you for your continued thoughts, prayers and support.

Wednesday (9-16)

Yesterday's swallow study showed that Kade is doing better controlling food before swallowing. We will begin to experiment with nector thick liquids as we work on trying to make him feel hungry. It is hard to meet his nutritional goals, and try to make him feel hunger, there are not enough hours in the day!

Yesterday Kade also had his first day of pool therapy. He really enjoyed it, slashing and kicking. Today at therapy, he impressed them by crusing around furniture. He is on the right path to walking, which is wonderful because my back is killing me!!

Monday (9-14)

Things are great here at the Loseke household. Kade keeps amazing us with his fast recovery to age appropriate activity. He is getting into everything! We love it!!
We will be going in for a modified swallow study tomorrow morning. Kade did very well last night with a sippy cup of thickened water. Multiple times he took drinks and swallowed without gagging. This morning he took about 5 bites of thickened formula that I fed to him with a spoon without gagging. We are very pleased with these small victories! We will post the results of the new study when we know more.
Thank you to the Random Acts of Kindness Angels for your generous gift to our family, it is greatly appreciated.

Friday (9-11)

Thank you to all of you for your Birthday wishes to me today. The best gift has already been given to me, to have my family back together under one roof!! We continue to be blessed with Kade's recovery. He can get from the kitchen to Hanna's room in approximately 5 seconds! If he sees her door open, you can guarentee he is heading that way. The other night she asked how to spell "Kade stay out of my room!" Obviously, everything is pretty much back to normal around here!

Kade is doing well with tastes of food. He continues to accept more into his mouth and has success with swallowing and not vomiting. The only way to make your swallow stronger is to swallow, so that is what we work on. He doesn't fuss as much as he used to when we put him in the highchair, so that is a great sign that he is accepting the "process" of eating. We will be going in for another swallow study next week to see if there are any changes from the inital study done at Children's.

We did finally get approved for Medicade and for the Aged and Disabled Waiver! Medicade will allow us to get the extra feeding and swallowing therapy needed, since we were running out of visits from our primary insurance. LPS will also begin to work with Kade, offering Occupational Therapy along with feeding and swallowing. Thank you to all the Taxpayers, we will not disappoint you :-)

Thanks again to all of you for keeping up with our little miracle!

9-3

Kade is crawling...everywhere!! His only limitation is his "cord" when it is hooked up for feedings, so now it is more like a leash :-) He is enjoying his new found independence, and the rest of us are getting back in the mode baby proofing the house again!

Our therapy schedule is now 3 days a week. Kade is doing well with tastes of food, but still not swallowing without difficulties. We continue to include him in all meals by putting him in his highchair and giving him a spoon and a dish of something such as pudding, pureed peaches or rice cereal. He usually just makes a big mess, but does end up getting a little in his mouth via covered fingers. We are grateful that he allows items into his mouth, as that would be a huge challenge to overcome.

I recently attended a group for families that have children with feeding difficulties, and learned a lot just from one meeting. In today's society, the problem is usually eating too much, and people understand that, but when a child doesn't want to eat it is very misunderstood. Eating is just another thing that we all take for granted. In the first year of life, there are so many different things going on in the mouth and brain that make eating possible. We were fortunate that Kade developed most of the skills necessary to eat before he became ill, whereas a preemie in the NICU for months may never learn to eat without extensive therapy.
Kade had tubes down his throat for many weeks, a machine breathing for him, and nutrition going directly into his blood stream, all saved his life, but also made his little body forget how to do some things. Obviously, the physical stuff is coming back quick, but it will be a while before he is eating enough by mouth to satisfy is daily nutritional needs. We pray daily that as he becomes physically stronger, the rest will fall into place.

Home health came again on Tuesday and Kade weighs 27.9 lbs!! We do not see Dr. Russell again until next week, but we are going into see a PA today for a cough/cold he has. Hopefully his ears will be clear and we will just have to ride it out.

Last night we went to the fair to the Newsboys concert and ran into one of our favorite Respiratory Therapist from Children's. We had made a connection in the hospital, so it was a blessing to catch up with her and meet her beautiful family. She gave me the bracelet she was wearing, which bears a beautiful verse I know a lot of you are familiar with, and it says it all. Thank you Chantel.

"I can do everything through him who gives me strength" Philippians 4:13

Friday (8-28)

What a wonderful week it's been. Kade is doing great and just keeps getting stronger. His therapists have been so happy to see how quickly he is gaining his motor skills back. One therapist even mentioned that Kade may break a recovery record if he keeps this up. He has figured out how to roll from his stomach to his back and to his stomach again. This week Kade also was able to get himself into the crawling position and crawl forward a few steps. They are so pleased that he may not have to go everyday, but just 3 times a week.

His stomach is getting stronger as well. Kade now only needs to have the feeding pump hooked up 4 times during the day to do bolus feedings of 6 oz at a time at a hour and a half each. He does need a continuous connection over the night, to get the rest of his daily dietary needs met. He has shown some small interest in taking very tiny tastes of pudding, but he is unable to swallow really anything yet. He usually ends up looking like he was in a food fight by the end of each meal. We are so thankful for the forward progress so far, and know that as he gets stronger and his body grows he will gain the ability the eat back.

Blessings to you and Thanks again for checking in on Kade.

Sunday (8-23)

We do not have a lot to report with Kade, which is always a GOOD thing! He continues to get stronger, even the therapists are seeing improvements. He still does not eat by mouth, but seems to be a little more interested in food. We continue to put him the highchair when we eat and give him some type of food to "play" with. If he happens to put food to his mouth we are pleased, but we definitely do not want to force the issue. We continue to pray that as he becomes physically stronger the urge to eat will come back. We have been successful with bolus feeds, which allows for a little freedom of the feeding tube being connected 24/7.

We have another full schedule of therapy in the coming week. We do find time to play outside with this wonderful weather we have been having! Wagon rides of course, and swinging in the backyard are Kade's favorite activities.

Hanna is excited to start in the Pre-K room tomorrow, still she will dearly miss her BFF, aka Ms. Cole. These kids grow up way too fast!!

Tuesday (8-18)

We have decided to go to Madonna for all of our therapy. We are there every morning, Monday-Friday, doing some type of therapy. Kade is getting stronger everyday! He is certainly holding his own with Hanna, a good chunk of hair in his fist is his main defense! I have busted them wrestling a couple times, Kade just giggles, so I usually let it slide-with supervision of course :-)

I wanted to mention how wonderful both mine and Troy's employers have been with this whole situation. Everyone we work with has been so generous, we cannot thank you all enough. Thank you and God bless!!

Thursday (8-13)

Sorry we have not posted in a while, we are busy enjoying all of the comforts of home! I know many of you continue to check for updates daily, but no news is good news these days!! It was nice to rest over the weekend, but this week has been full of appointments and a lot of hard work for Mr. Kade.

Monday we saw our pediatrician for Kade's 1 yr/follow appointment. He is right where he needs to be for height and weight. We will be going back next month for another follow up and to get shots. Dr. Russell was nice enough to let us skip shots for now, and we also got out of a finger poke!

The last couple of days have been filled with therapy. Kade is doing very well getting his strength back. He can now go from sitting to tummy and then to his side, and sometimes he makes it to his back. He is reaching and leaning for toys which is a great sign that his trunk muscles are getting stronger. Eating is still a hurdle for us, so we continue to work with him. We pray that as he physically becomes stronger, his eating by mouth will improve.

More in the next couple of days!

Birthday Weekend

We had a wonderful birthday weekend doing nothing!! The four of us celebrated Kade's birthday with balloons and Elmo cupcakes. Kade did smash the frosting around and squished it between his fingers but was not interested in eating it. We had some presents for him which he and Hanna enjoyed playing with together.

Kade is gaining his strength back more and more each day. He has been able to get himself on his side from both his back and tummy. He also will scoot backwards when on his tummy. It is obvious to us that he remembers how to roll, crawl, and move but he doesn't have the muscles to make it happen...yet! We know that it will only be a matter of time until he is on the go, especially when it comes to keeping up with Hanna, she truly is his best therapy.

This week is going to be full of therapy evaluations, hopefully we will find a good fit for Kade's needs. We had his 1 yr appt scheduled even before he got sick, and it just happens to be tomorrow, so we will get on track with a care plan from his pediatrician. A nurse from Children's Home Health came by today to see how things were going. They will visit again next week.

We did make it to church today and it was nice to see everyone there, both of our Pastors were very excited to see Kade, and us to I suppose :-) It is so great to be home!! Words cannot express how we are feeling! Thank you for your continued prayers.

Friday Night

We made it home safe and sound. Kade has had a lot of smiles on his face ever since he got back into his car seat. Hanna was so happy to see Kade back at home today, and he hasn't stopped watching her and laughing. We truly feel blessed to be home.

Home bound!!!

Its official!!! We are just crossing the river. We'll update more later.

Thursday Night (8-6)

Kade is snoozing, and I am packing!! We have accumulated a lot of stuff these last couple of months! I brought the big suitcase :-)

We are so excited to be heading home! We have not told Hanna yet, just in case...I have already burned that bridge once. She will be so excited when she sees him at our house tomorrow. His room is all cleaned up, fresh sheets and all his toys waiting for him.

Although our stay here has been long, we know that others have been here much longer and continue to be here for months, if not years. I overheard a family leaving the other day saying they had been here "A long time, 8 days." At first, I thought "try 8 weeks" then I remembered talking to a mom of a heart baby, they spent the first 8 months of his life here, went home for 3 months, and are now back again. We pray that we will only be back for checkups!

Thanks for keeping up with us, we will continue to post as our journey continues at home in Lincoln. We will be starting outpatient therapy soon, but Kade's best therapy will be being home and trying to keep up with Hanna!

Thursday (8-6)

We have met our goal of 60ml/hour and so far so good. Kade is in great spirits today, playing and laughing. He seems to be more active than the last couple of days which is so fun to watch!

Surgery has given us the green light to go home tomorrow!! Troy and I both will not totally believe until we are driving with Kade in the car! The plan is to take out his central line early in the morning and then we can leave in the afternoon. I have not heard an exact time for our departure, but I am hoping that in 24 hours we will be home!

We are so happy to be home by Kade's birthday! We will keep everyone posted on our departure.

Wednesday (8-5)

Another great night of sleep, for Kade, almost 12 hours! The bench/bed in Kade's room has taken a toll on mine and Troy's neck. Currently Kade's feeds are at 50ml/hour, which is where we will hold for today. Our goal is still 60ml/hour. Surgery is pleased with his progress and has taken him off all meds and additional fluids. Hopefully the central line will come out tomorrow, and we will be on track for home. I will not say for sure that we are going home until we are on the interstate heading West!!!

Thanks again for keeping us all in your thoughts and prayers! You all are always included in ours.

Tuesday (8-4)

We had another restful night, sleeping from 8pm-6am! Things are working as they should inside and we have poop! Yesterday we took full advantage of our wagon time, going on numerous walks and then to the playroom where Kade got to swing and play on the floor, and even some time outside. We will probably do the same today.

Our goal is to get Kade's feeds up to 60ml/hour (2 ounces). Yesterday he was at 20 ml/hour, and they have bumped it up to 30 this morning. In 12 hours we will go up to 40, then possibly progress a little faster tomorrow.

Of course, we are still on Kade time, but from the buzz around here, our days left at the hospital are single digits!

Monday (8-3)

Kade had another great night! Surgery gave the go ahead to start formula into his G-tube at a rate of 20ml/hour. I offered him a bottle of water and he just played with it. We will see how he tolerates the formula this morning and possibly try some table food this afternoon. Before Kade got sick he preferred to feed himself, so we will do it his way!

For pain we are now on a "as needed" Tylenol. We also got permission to go on wagon rides again!!

We will keep moving forward...

Sunday Night (8-2)

The epidural was turned off and remove today around 2 pm, and Kade has been in a great mood ever since. He has been sitting up playing and talking throughout the day. We hope that the Tylenol will be sufficient to keep him comfortable, if not we will have to resort to some type of narcotic for relief.

Tomorrow Kade will probably be started on "clears" for about 12 hours and then we can move onto formula. I would assume that we would have the opportunity to offer him a bottle also in the next couple of days. We eat in front of him all the time, hoping that he will be interested and want to stuff his own face!!

Praying for an uneventful and restful night, thank you all for your thoughts and prayers, we would not be where we are today without them or you.

Sunday (8-2)

The boys had a great time yesterday juggling toys and playing with cars. Kade has really done a 180 since Friday. He is giggling and laughing like normal. Which really helps our moods as well. Hanna and Mommy had a great time at the museum. It was good for them to have some fun time together. Although hanging at the hospital can be boring for some, Hanna has managed to make friends and now rides bikes around the hallways.


Kade is doing so well. He stayed awake from 11a.m. yesterday until 8:45 last night, few just two 10 minute cat naps in the middle. He slept soundly most of the night except every 4 hours when the nurses check his stats and give him some Tylenol. At 6a.m. this morning he was awake and ready to play again. For the most part Kade is just in his bed, but we do sit him up to play with toys and get exercise a few times a day. The epidural is still in and will be removed tomorrow. Until then he is restricted to his room so they can monitor him, so no wagon rides for now. He will get the rest of the staples out from Thursdays surgery today.

We have been praying that after they remove the epidural tomorrow Kade won't suffer from withdrawals from that pain killer as well. We hate the thought of having to go through that again, but we will do anything for this little guy. He will be getting some food in his tummy tomorrow as well. It's time to try out the G button. I hope that since Kade hasn't had anything in his stomach for the last 3-4 days he will decided to take a bottle on his own.

Saturday (8-1)

August has arrived. Looking back it is hard to believe that we have been here since June. It has been a long rough road so far, but we are looking forward to smooth sailing in the near future.

Kade had a good night with a lot of rest. He has been in a good mood this morning playing and talking. I hope that he will take a nap here soon so that he doesn't get over tired and agitated.

Surgery stopped by and said that they are pleased with how Kade is doing. They are still going to hold off on anything in his tummy until Monday. They will remove a couple of the staples from his incision today, and then the rest tomorrow.

Hanna and I are going to the Children's museum today. Should be a good girl's day out, leaving the boys behind to fend for themselves :-)

Friday Night (7-31)

Kade has been able to get a little more rest this evening now that the nurses only check vitals every 4 hours. He HATES the blood pressure cuff, and of course it take 3-4 tries before they finally get a good reading. The epidural seems to be working well, and he gets Tylenol every 4 hours. He definitely does not like to be moved right now and who could blame him!!

We pray for an uneventful weekend with a lot of healing and rest. Kade will not get anything in his tummy until at least Monday, currently he receives nutrition through his central line. The coming days will be long and challenging, but we hopefully are done with surgeries for a while, if not all together! When the time comes, both the central line and G-button can be removed fairly easily at the bedside. We will most likely be here for at least a couple more weeks. We would have loved to be home by Kade's 1 st birthday, but as the Surgery team says "this is Kade were dealing with" so he calls the shots!

Friday (7-31)

It was a long night for Kade. He seemed to start feeling a lot of pain around 11:00 and needed to get another bolus from the epidural about midnight. We noticed at that time the blanket he was laying on was wet. After further inspection we came to the conclusion that the epidural line may have been leaking. This prompted a few calls and we got to have a late night meeting with surgery and anesthesia. Surgery was the first to arrive and was worried that if the line was leaking or had come out that we would have to go back to the PICU in order for Kade to get back on a IV pain medication drip(just what we were trying to avoid). We really didn't want to go back to having to deal with another long wean off of the pain meds.

Anesthesia came and took a look at Kade's back and the epidural site. After a few tests they noticed that a few small drops were leaking out, but Kade was getting most of the epidural and he would not have to move to the PICU. Kade got another catch up bolus of the epidural about 1am and was off to sleep for a little while. Around 3:00am Kade started to get fussy again and then seemed to be in a lot of pain. This time he got a dose of his old pain medication. It had been almost a week since he had any of that medication. It helped to settle him down and get back to sleep.

Anesthesia stopped by again to reevaluate the situation and noticed that the line might have been placed to far in. The epidural might have been delivering the medications to high and only gave Kade relief when the bolus were given. They readjusted the line and Kade is now resting again. Hopefully he can just cruise through the weekend now.

Thursday NIght (7-30)

Kade's surgery went well. He did have to get a small dose of pain medication so they could put the epidural in. They all said he did really great and we are happy that we won't have to go through withdrawals again. The surgery was a little over 3 hours long. Dr Azarow said that he did have to remove about 3 to 4 inches of Kade's intestines to reattach them. They will be keeping a very close eye on him for the next few days to make sure nothing seems abnormal. It sounds like he won't be getting any formula in his G-button for about 5 days. This should give his body enough time to heal from today's procedure.

He woke up in a great mood in his new room 513. He was really happy and just wanted to play. It was good to see him without a tube in his nose. He is a little puffy and we were warned that he might get that way for a few days, but it's nothing compared to when he spent his first week here. After about an hour of play he started sleeping again and has been doing so for most of the night. He did have to get a little extra medication from the epidural around 8 tonight to help with the pain.

Thanks for thinking of Kade and praying for him. He is a special boy to have each of you care so much for him.

Thursday Morning (7-30)

I have a feeling that Kade knows he will be down for the next couple of days, because he was up from 3:30-7am laughing and playing. He finally settled down in my arms about 7 and we both slept until about 9:30.

Hanna and Daddy got here about 10am and Kade was ready to go again! He certainly loves his big sister. We went for a wagon ride and then down to lunch. Kade sat in the wagon content and happy while we all ate. We came back to his room around noon and surgery called to say that they wanted to take him early, so we packed up and headed down (in the wagon of course) to surgery. They took him back at about 1:15.

Kade will be getting an epidural instead of narcotic anesthesia today, and it will stay in for about 3 days. The surgeon, as well as us, would like to avoid going through withdrawal again. If the epidural doesn't seem to work, they will use a narcotic. After surgery we will be going to another new room, either back to the PICU or to 5th floor which is called Intermediate, for closer observation.

As always, we will keep you posted when we know more.

Wednesday (7-29)

We are still on for surgery tomorrow at 1:30. The surgeons have stopped the re-feeds and will be turning off his regular feeds tonight at midnight. He is going to be one hungry boy by the time they are ready to start. This is probably a good thing, I would assume that he has not felt hunger for some time, since his feeds have been continuous, always keeping something in his belly.

The surgeon said that when he comes back from surgery tomorrow he will probably look pretty puffy and be out of it for a couple days. It has also been said that depending on how things go, and Kade's history, we may end up in the PICU for a day or so afterwards to keep a close eye on him. That is fine with us, we love the nurses and doctors down there!

We had a pretty good night of rest with some long stretches good sleep. Today, we will probably be taking extra wagon rides to hold us over until after Kade is feeling better from surgery. He did eat some more puffs this morning, and enjoys sitting in the highchair.

We pray for the surgery team and staff, may their skill and knowledge continue to help our boy get well, and of course for our Mr. Kade, that his little boy continues to be strong and heal so that we may all be back together under one roof soon.

Tuesday Morning (7-28)

Kade was sitting up in his bed playing when Dr. Azarow came in and said "Sit up and play if you want to have surgery on Thursday!" We are still on the schedule for 1:30. He will get a G-button, which will double the length of surgery. We prefer to get it all done at one time, so we will deal with the added time.

Kade also ate a little this morning. We put him in the highchair and put a puff in front of him and he just picked it up and ate it! He had no problem with chewing or gagging. He will be having a steak dinner before we know it!

So far it has been a busy morning. Kade is resting now, so we will hop in the wagon after nap for one of our daily passes around the hospital.

Monday Night (7-27)

I have to apologize for not posting all weekend! I know that a lot of you check the blog multiple times daily, and I hope that you can forgive me! Kade certainly keeps us busy these days. He is on a pretty good schedule, only napping a couple times a day, and ready to play the when he is awake. We take multiple wagon rides a day, and have been able to enjoy outside a little. Kade loves the wind blowing through his hair.

There is a nice patio off 2nd floor where we have eaten many meals over the last couple of months. It is nice to have Kade join us, even though he is not interested in eating. Tonight while we were out, there was a little boy probably about 3 that was eating an ice cream cone. I asked his Grandparents if Kade could watch him eat it, hoping that Kade would become interested in it. I think Kade was just happy to be out of his room and see someone else besides nurses or us :-)

Kade is still doing great being off of the meds. I did have them give him some Tylenol tonight for teething of all things! He has gotten 3 teeth since we have been here, for a total of 5. It is great to have his system free of the meds, his personality is more like the Kade we know.

Surgery has us on the schedule for Thursday at 1:30 to replace the stoma, remove the Broviac line, and possibly place a G-button, which will eliminate the feeding tube through the nose, allowing us to feed him directly through his stomach while working on getting him to eat orally. If all of the above takes place, that means that Kade will be free of tubes!!! Except for when feeding into his tummy. I can't wait to just pick him up, not worrying if I am "caught" on something. We have been quoted 5 days after surgery to go home, but of course that may change. I will believe it when we are putting Kade in his car seat to leave!

For now we pray that all goes well in the next couple of days leading up to Thursday. Our little fighter still has battles to fight, but they are becoming few and far between. Thank you all for continuing to follow our journey.

Sunday (7-26)

Kade had a long weekend. He has been going through what we are hoping is the last stage of withdrawals. He had his last small dose of methadone yesterday, and the pain killers are only as needed at this point. The good news is that he hasn't had anything but Tylenol since last night. His mood has been very fussy this weekend, but you can't blame him for feeling that way. Surgery has been steadily increasing the amount of formula he gets over the last 4 days. At 12 am today he got to 45ml an hour, which is 1.5 oz an hour. He was unable to keep much down over the night so the turned in down to 40 ml. Surgery has been pushing to get more food in Kade to help stretch his stomach and get him ready to close the stoma. The goal is to get Kade to 60ml an hour.

We are thinking that the withdrawals is why he has trouble keeping food down. He has been such a trooper and he can get over this as well. There was some happy moments today. The whole family got to go outside and have lunch today. Even though Kade can't eat he loved being outside and smiled the whole time. He also enjoyed playing with Hanna, she knows just how to make him laugh.

Hopefully soon Kade will not feel any more effects from the drugs leaving the body and he will be able to eat and keep food down on his own.

Thursday (7-23)

Kade has been resting a lot today. Were thinking that the extra work that his body is doing to process the waste is making him really tired. Which is good, his body has a lot of work to do, and it repairs itself the most while he is resting so sleep away little man. We do have some exciting news. Were are moving rooms tonight. The Hospital staff said that they have a nice quite corner room for Kade if we would like to move. Kade has reached enough patient points to qualify for an upgrade. Membership has it's privileges?

Kade's surgeon happened to find us on our daily wagon ride. He wanted to speak to us about Kade and the plans for the near future. He is happy to see that Kade's bowels are starting to work a little. It will really help him when the stoma is put back together for good. They plan to get rid of his stoma the first part of August with a 5 day recovery period in the Hospital afterwards. We were hoping to get to go home early next week, but that has been pushed back to the later half of the week. Which really only leaves a few days between when we are scheduled to go home the for the first time, and Kade's hopefully final surgery. Which puts us right back to the issue of limited help on the weekend, if we were to need anything. So, Even though we would love to take him home for a few days it's in Kade's best interest to stay. He will remain at Children's until most likely his 1 year birthday or later.

The bummer side is that it will be longer until we can all be at home together. The plus side is that if Kade does well we could go home with a boy that doesn't have a IV line. We might only need the one that feeds him until he can learn how to swallow again. Were thankful that home is still on the horizon and that Kade gets better and stronger each day. He also seems to be packing on a few extra pounds as well, he now weighs 26 lbs, but it looks good on him.

Wednesday Night (7-23)

Kade had another procedure done today. Surgery placed a catheter into the stoma to redirect the output down to his lower intestines. You are probably thinking "What does that mean?" Long story short, they want to get him to poop! The stoma is too high for his gut to absorb everything that is going in, so once it comes out of the stoma, it is getting put back in to his lower intestines which equals poop out of his bottom. The procedure was at 2 pm and we had poop by 6 pm! Again, praying for poop! Another great sign that everything is working as it is supposed to.

We are not sure if Monday will be our discharge day, but it hopefully will be soon. We will go home. Madonna said that Kade is too complex for them, so they are sending him home with us-go figure! We have had our 7 week crash course in medical care. No seriously, we feel confident that we can handle it. The nurses take every opportunity to train us, plus we will have someone to help from time to time.

We pray that today's procedure allows us to stay on track of going home. I made the mistake of telling Hanna that Kade will be home in 6 days Tuesday night, and then had to tell her that it may be more this morning. Of course she asked, "Why?" I told her that the Doctors can't make up their mind, and without a second thought she shot back, "Well, they better get it figured out!" I couldn't agree more :-)

Wednesday Morning (7-22)

Kade has been sleeping for 9 hours straight. I'm so happy to see him get the kind of rest that he was at home. He played for a long time last night sitting up in his bed, and got to talk to big sister through Skpye last night. We have been using Skpye to do video conferencing from the hospital to home so that Hanna can get some Kade time during the day.

Not a whole lot on the table for today. Kade's main surgeon stopped by yesterday and talked about Kade's stoma. He said that they would like to see it decrease the amount of waste. So they are switching Kade to a different formula mix to see if his body will absorb it better. If it doesn't they might put the stoma back in early. It's great to hear that he would be closer to whole again, but I think Kade would end up being here a little while longer if they made that change.

We have found a new fun thing to do with Kade. An old fashion wagon ride really seems to cheer him up. The change of scenery and the motion seems to relax him. He hates it when we have to stop for the elevator or when we get back to the room. I think he would rather stay in the wagon than be in his bed.

Thanks for checking on Kade.

Tuesday Morning (7-21)

Kade had another great night, sleeping 7 hours straight and then back to sleep for another 3 hours. He woke up talking both times, just like he did before he got sick. We just got done with a bath and he is giggling and talking to himself in the mirror. I let him splash the bucket of water for a while and he loved it.

Kade had a haircut this past weekend, he looks so cute! I have been dressing him in his regular clothes as much as possible, not many outfits accommodate the extras on attached to his body, but we make it work.

We do not have much planned for today. We will attempt oral feeding again, and work on building up our muscles. Kade can sit up by himself a little longer each day, so our exercises are working!!

Monday Evening (7-20)

The retention sutures are out!! We are so happy to have them gone, not only for the obvious reasons, but also because the skin around them had become quite red the last couple of days. Kade did not fuss too much during the removal, and afterwards he had a look of relief and clam on his face. He fell asleep shortly after and is still snoring away!

We are thinking that we will be here throughout the weekend, and possibly heading home early next week. The case worker here made a good point that it is not good to go home on the weekend, since resources are limited over the weekends. This is fine with us, we want everyone to be accessiable to us during such a huge transition. Of course, Kade will determine our schedule.

We continue to work on eating with Kade. He still does not like his bottle, but we did get him to taste a little applesauce today. Eating will be a process that we will continue to work on.

Have a great night.

Sunday (7-19)

Kade had a pretty good night, but became a little fussy from about 3am-4am. He is running a fever and has vomited this morning, so we are not sure if it is from withdrawal or he has caught a virus. Hopefully it is just his body reacting to withdrawal, the last thing we need is a virus!

The surgeon stopped in this morning and is still thinking that we could possible go home at the end of the week. Kade will need to be weened off of the Methadone before we can go home. The retention sutures will most likely come out before we leave also. Dr. Azarow said that he is looking at the first week in August to repair the stoma, which would be a wonderful birthday present for all of us!!

We do not know if Madonna inpatient treatment is in our future or not, that will be determined this week. I would rather have him home and take him there when needed, but we will do what is best for Kade.

Kade is resting now, so I am going to sneak down and get some breakfast and COFFEE!!
Thanks for keeping up with us.

Saturday (7-18)

Kade is surprising us daily!! He continues to improve with his movements and coordination. He can sit up without support until he gets tired, and has controlled movement of his arms, legs and head. It is so nice to see him play! We have a wagon full of toys in his room, but he is most entertained by Hanna. She is such a good big sister, making Kade laugh and helping him with toys.

Kade still is not liking the bottle, so he continues to get external feeds and other IV fluids for vitamins and calories. He has not pulled out the feeding tube since Thursday, mostly because we put socks on his busy hands while he sleeps!

We thank God for continually answering our prayers for Kade's healing and health.

Friday (7-17)

Kade is having another fantastic day!! He got another great nights sleep. We are so happy that he seems to have his days and nights straight. He played for most of the day so far with short nap this morning. The doctors have cut back again on his medications and is handling it so well. They have also increased the amount of formula he is getting in his tummy. Kade gets to work with PT twice a day on trying to drink from a bottle with the formula that has a honey consistency. He still prefers not the drink at all and pushes the bottle away. On the plus side he doesn't have any problems putting his pacifier in his mouth on the first try. His motor skills are really working well, and we thank God for all the great progress he is making. Hopefully soon his body will be able to tell him when the right time to swallow is and we can say goodbye to the feeding tube forever and get back to holding him in our arms and feeding him from a bottle.

The doctors also gave us great news today. Kade is doing so well now that he may be able to be dismissed from Children's Hospital by the end of next week. We have learned not to get our hopes up too fast on setting any time frames in our minds. However, at least hearing them talk about the possibility makes us so happy.

Thursday (7-16)

Kade had a good night. He got some great sleep and really looks more and more like himself each day. Daddy got the chance to take Kade out of the room for a walk in his arms yesterday. He really enjoyed looking at all the amazing kids artwork and funny stuff on the walls. He did pull out his feeding tube again, so Kade has to wear socks on his hands when his is resting or sleeping. The doctors have turned his feeding down to 2/3 an ounce an hour. They also said that they are happy to see him so responsive. He really enjoys playing with his toys and gets some great workouts during the day.

Wednesday Morning (7-15)

Kade had and EXCELLENT night!!
He slept from 8pm-4am, was up for about an hour, and then back to sleep until about 6:30 when surgery came in to look at him. We played for a while and he is sleeping again. Amazing what a little food in the belly can do for a guy! His feeds were increased up to 60 ml/hour which is about 2 ounces throughout the night. He has kept it down so far!

Tuesday (7-14)

The feeding tube is back. Not a surprise to us, and it is a relief to know that now he is actually getting food in his tummy. The swallow test showed that Kade cannot drink anything thinner than honey to prevent his from aspirating into his lungs. We will continue to give him a bottle in addition to the external feeds. Like we have said before, another benefit to the feeding tube is the medication issue, he doesn't have to literally choke it down, and they do not have to wake him up to give it to him. We pray that all of this will allow for faster healing and more restful rest for all of us :-)

Our hope is that the rest of this week is boring for Kade! Now that he is getting nourishment to his little body, and he gains the strength he needs to bust out of here!!!

Monday Evening (7-13)

Do to a conflict in schedule, Kade was unable to do the swallow study today. However he will be getting it done at 8:00am tomorrow. One of us will be with him during the procedure and watching the X-ray machine closely. We were really hoping that he would show everyone that he was just joking around and start eating like crazy today, but that was not the case. In fact he kinda went the other way.

Someone from the swallow study stopped by today to just watch Kade try to eat. She is pretty sure that he is in fact having an issue with milk going down the wrong tube. He forcefully pushes the bottle away and gets super mad when we keep trying. Kade really needs to get something in his stomach so after the study he will be getting the feeding tube put back in place. Surgery has said it will be the best thing for him and while were sad to see another tube hooked back up we know it has to be this way. I haven't had the heart to tell Kade yet. I hope he doesn't pull this one out. It will be good to get him all the food he needs from the tube and skip past the problem spot. Were praying that it will give him the strength back to get better and overcome the swallowing issue as well. On the plus side we will no longer have to wake him up to give him his meds, and he doesn't have to taste it anymore either. Trust me his cries to hard to handle when it's med time.

We did have a good day of playing and PT workouts. He was also up a lot this evening so hopefully he will sleep more tonight than previous nights. He is starting to get his voice back and starting to babble more and more. Even his giggle is more like we remember it.

Here's one of his favorite new toys to play with. It's from Mr. and Mrs. soon to be Brian and Anne Ballweg. Hanna will be the flower girl in the wedding on Friday. She has been so excited since they asked her. Now that the day approaches closer she is starting to get a little nervous as well. It's too cute!!



Thanks for keeping up with Kade. He is going to have a lot of hugs to dish out when this is all over.

Sunday Night (7-12)

Kade is still having a hard time with the drug withdrawals. He really hates having to take medications orally. He starts to cry each time they get near him with another dose. Calming him down after a dose can be trying for us as well. We were able to get them to cut back on a few of them. This should hopefully allow him to get some more sleep and not have to awaken to another painful experience.

The doctors warned us that we needed to get all the sleep we can early on while he was in the ICU, as we would need it during his recovery. They said the hardest part is yet to come. At the time we couldn't fathom the idea of going through anything harder than watching our son grow weaker and sicker, and having so many moments of uncertainty. As it turns out they were right again. Kade's internal clock is really only tuned into his pain and anguish. We find ourselves shooting out of the couch\bed in his room at the slightest whimper to try to ease the uncomfortable pain. It can take awhile to find the right soothing method to calm him back down. What worked 40 minutes ago usually doesn't work again. So we go through many different methods until we can get his mind off the pain and into a calm state.

Kade's tummy seems to be healing great on the outside, but the Doctors would like to see him eat more on his own. Hopefully, he will soon start taking to the bottle more. We are afraid that he now thinks of the bottle as a sign that more medications are soon to come. Over the last few days it seemed to help him to wash the medications down with the bottle, however we may have created a case of Pavlov's Dog.

Tomorrow Kade will be going through a swallow study. This test will show if his body is telling him when the right time to swallow is. If he is having issues they should be able to see a dye fluid enter his lungs and not his stomach. It's hard to believe that even something so simple can be taken for granted.

We did have a lot of fun moments this weekend together as a family. Hanna loves Kade's new room and has already started to follow the nurses around on this floor as well. She did say that she is going to learn how to work at a hospital so that she can make her brother better. I hope she follows those dreams.

Gods Blessings to all!

Saturday Night (7-11)

We were able to get Kade to smile and giggle a little today. When his pain medication kicks in he is a happy little guy.

Saturday (7-11)

Hello all,

Kade is resting right now. He has had a busy morning and started getting really fussy around noon today. Which is understandable, he had some PT exercise this morning for about 30 minutes. He did great and seemed happy during the whole time. We are working on the muscles in his neck. He is able to move his head from side to side, but it does make him tired and the motion is a little jerky when he tries to follow us or toys.

He has done a good job on keeping the small amounts fluid down. We will begin to start to give him a little more and see how he adjusts. Right now he is getting around an ounce every other hour. Our end goal will be for him to eat 6-8oz about 4 times a day.

Most all of the medications that he now has to take is oral. We are having to give him something around every 2 hours, and some times it's a few at once. You can tell that some of them he is not very thrilled to take. I suppose they must taste awful. So we have tried to dilute it by putting some of them in his bottle, or by giving him small amounts of meds and then quickly follow up with the bottle.

Friday (7-10)

Kade has been having trouble keeping formula down since last night. It seems that the moment I think we have success, up and out it comes. Pedialyte seems to stay down so we are now mixing 1/2 formula, 1/2 pedialyte. So far so good...he fell asleep about an hour ago and he had 2 ounces in his belly!!!

The vomiting could also be a result of withdrawal. Now that he is off of the narcotics, we need to start weening him off of the drugs that helped ween from the narcotics originally. This could be up to a 2 week process.

Today's goal is to get Kade to drink and keep down anything that he can. The Surgeons are pleased with his progress, and at this point do not think it is necessary to put the feeding tube back in, we just need to keep trying to fill his belly. We pray that his little body accepts this nourishment so that he may continue to amaze us with his progress!!

Thursday Night (7-9)

It is official, we are out of the PICU and now in room 409. It was almost 9:30 pm before we got everything up here, so unpacking will have to wait until the morning. There are major benefits to our new room!! We have our own bathroom, fridge and a real door! Other benefits include Kade being off of the heart and oxygen monitor! The only tube he has left is his Broviac line that was placed on Tuesday. The line is used mostly for nutritional needs, but can also be used for other meds if needed and blood draws. Currently all meds that Kade takes are oral. He is still adjusting to having formula in his tummy, but he has kept meds down! He had a total of 1 oz over a 30 minute time frame tonight and kept it down for over an hour now. He is resting comfortably right now, so I guess I should also!
Good night and thanks for all of your prayers and support!!

Thursday Morning (7-9)

Kade and daddy had some play time last night as we were working on his motor skills. He got a mobile for his crib, and he enjoyed playing with it for a little while. Here is a little video on him trying his hardest to reach out for it slap it.




Kade had a hard time resting during the morning hours. His nurse said that he would not rest for more than 45 minutes at any one time. He got to spend a lot of time in the arms of many wonderful and caring nurses. He finally slept for about 2 hours early this morning after they gave him a small bottle of pedialyte. He truly missed his bottle!!

When surgery stopped by this morning he was a really mad little man. They said to give him whatever he wants. Since he is very happy when he has the bottle, They have decided to remove the feeding tube from his nose and let him have a bottle to eat with. Just small amounts to start with and we'll plan to work up from there. Soon after that the doctors rounds started, Kade waited until we all stepped out of the room and then decided to remove the tube from his nose on his own. He is very strong minded. About 30 minutes later we settled Kade in Mommy's arms and gave him a bottle. Enjoy the video of the moment. "Milk in a bottle. Simple but beautiful"

Wednesday Night (7-8)

Kade had a busy day today. He was wide awake for most of the morning, and we found out that he loves to watch Baby Einstein. He took a nap around 12 and then physical therapy stopped by to work with him. They were happy to see Kade move his arm and legs as much as he does. He gets pretty mad at times and swings those arms like crazy. I think he is very frustrated because the last thing he remembers was being able to hold his own bottle, feed himself finger foods, and crawl. Kade now has no control of motion when he swings his arms. He ends up hitting him self in the face or the leg most of the time. At least he keeps moving and trying.

I was able to get him to smile this afternoon by making silly sounds and faces. He even started to laugh. It was another huge step for him and us.

Wednesday Morning (7-8)

Happy 11 month Birthday Kade!!

Today also marks 1 month since Kade's original surgery in Lincoln. One month ago we could not have imagined what was about to unfold, the truth is always stranger than fiction.

Our days in the PICU are now limited. During rounds this morning, the doctor mentioned that we could move to a regular floor possibly as early as tomorrow. This is exciting news for us. We are also a little anxious, as we will not have the "cloud of care" we have here in the PICU. Mostly we will miss all of the wonderful Drs and Nurses that we have grown to know and love. One nurse mentioned that they will look at room 207 as "Kade's room" for a long time after we are gone. They will certainly miss their "Kader" as much as we will miss them.

Not much is planned for today, just rest and to get his feeds increased. We were able to give him a little water from a bottle, which he thoroughly enjoyed!! He also had a good bath this morning. Kade is resting comfortably right now, when he wakes we will begin physical therapy.

Thanks to everyone for keeping up with the blog.

Tuesday Afternoon (7-7)

Kade was able to keep off the vent after surgery. He was quite the handful from what we hear. He decided after he woke up to take the feeding tube out of his nose. He also took off his colostomy bag twice. So they decided it may be a good idea to keep 2 nurses with him in the recovery area until they handed him back to us. It's good that he is a fighter, but putting the tube back in will not be enjoyable for him.

He is resting now and will hopefully stay that way for awhile.

Tuesday Morning (7-7)

Kade is currently in the OR to have a Broviac line inserted. A Broviac line is similar to a Central line, except it tunnels under the skin and can last longer with out posing as many infection risks. We will most likely go home with the line in place. They will need to put him under and back on a ventilator for the procedure. We pray that he comes off of the ventilator when they are done without problems. He has been doing very well breathing, so they do not anticipate him having trouble. The whole procedure will probably take a little over an hour.

Kade has been in good spirits these last couple of days. Withdrawal has not been as intense as it was last week when the drugs were initially turned off. The Drs have found the right combo if strength and frequency of the Methadone/Adavan.

We get to hold Kade pretty much whenever we want, and are able to do it without assistance! He has also taken a liking to Baby Einstein videos, we will watch as many as he wants!

We pray that Kade tolerates todays procedure well, and it is quick to get back on the right path of healing and recovery.

****Update from surgery****

The surgeon just stopped by and made the comment "He should know by now that nothing with Kade is going to be easy". Lucky he said it with a smile so we knew things were OK.

He was able to get the line in and where it needs to be, but Kade's skin is very thin from being so sick. So thin that he couldn't get any stitches to hold. Everything is being held together using steri strips.

They are taking the old line out now and they they will let him wake up a little and try to take him off the vent.

Monday Morning (7-06)

Hi all,

Sorry we didn't update yesterday, Hanna and Grandma Ruth were down. We enjoyed our time together, playing hide-n-go-seek and coloring.

Kade is more alert than ever. His eyes are opening more and he is staying awake for longer periods at a time. He whimpers and cries a lot from pain and withdrawal. Holding him seems to help both him and us. One of the doctors made the comment yesterday that he is not suffering from a lack of love. Pretty sure that will never be an issue for him! Kade is still getting small amounts of formula, which he continues having a problem keeping down at times. We think that its mostly do to an issue with mucus build up from his nose and lungs that he can't clear on his own. He does a good job coughing but the little guy can't clear his throat like you or I.

He hasn't been running much of a fever these days which is another good sign. We are hopeful that we will move out of the ICU within the next few days. Woo Hoo!! They have finally turned off the last IV drip of pain med this morning. They have been cutting back in it the last few days. Needless to say, last night was a rough night for Kade. Not a lot of sleep for him and he was really hard to console. He will continue to get medications for pain and withdrawals via oral treatments.

He will need to keep a IV line in his body for now. Since he is still only getting small amounts of food in his tummy they need to supplement other fluids for now as well. In order to do this they need to put a different IV line in. The one he has currently is in this groin. Since Kade is using diapers and getting changed frequently there is a higher chance for infection. Surgery will be placing a Broviac line in him sometime over the next few days. Hopefully this will be the last time a line needs to be put in his body.

Kade's tummy looked good enough today for them to remove the drainage pump that had taken the place of the wound-vac about 2 weeks ago. This pump was removing a fair amount of fluid for him on a daily basis, but started to slow down considerably about 3 days ago. So he has one less opening in his body right now.

Besides working with neurology this week, we will also be working with physical therapy as well. Kade has lost the ability to do the normal everyday things from being in a hospital bed for (I really hate saying this now) a month. One of the first things we will be working on is seeing how well he can swallow. It's hard to believe that we will be going that far back, but at least we can relive all his firsts again. The doctors here feel that after we leave Children's, Kade will be spending some time at Madonna in Lincoln.

Thank you again for keeping Kade in your hearts.

Fourth of July (Saturday)

Kade totally rocked the MRI!! He was such a good boy by lying still and keeping good stats during the whole process. I was able to sit in the room during the MRI. The neurological radiologist is on today, so we may have the results later this
afternoon.


**Saturday Night**

Results of the MRI showed some abnormalities in areas of the brain that control fine motor skills. These abnormalities are the result of a couple mini strokes suffered in the begining of this whole ordeal. There is no way to tell at this point how it may or may not affect Kade in the future. We are encouraged since he is so young, and his brain still has a lot of developing to do that this can be overcome. The neurology team will be doing more assesment test this week to determine more details from the MRI scan.

Hope everyone is enjoying the holiday. The view from Kade's room is beautiful even on this cloudy night.

Fourth of July (Saturday)

Happy Fourth of July to everyone!

The nurses helped me dress Kade today in his 4th of July outfit, enjoy the picture!!We tried to watch the fireworks last night, but after the rain, the skies were too overcast. As long as the weather holds out, tonight should be a good show.

Kade had a good night, and is calm this morning. He has been off of the Versed, a sedation/pain drug, for about 12 hours now and shows a little more agitation, but is otherwise clam. He has vomited twice in that 12 hours time span, this could be from withdrawal or he has also been coughing a lot also. The Drs stopped his feeds for an hour each time, and then restarted. We will just watch him to see how he responds. To deal with withdrawal, they will be going back up on the Methadone. This whole process of weaning and withdrawal will take a while since he was on the drips for so long.

Kade's breathing has improved each day. His lungs are clear, but he just needs to get the junk out of his throat. He coughs good, but he just needs a little extra "umph" to get his throat cleared out. He continues to get breathing treatments every 4 hours, and the percussion treatment every 8.

We may get the MRI today if schedules allow. There is no rush for it, but he is pretty stable, and they will need to sedate him more for the procedure. We may as well get it while he is already a little sedated. Troy and I are not too concerned about what it may show. If it shows that there are areas of his brain that have been affected by all of this, we will deal with it when the time comes. We will not love him any less, and we will get him the treatment he needs if necessary.

Friday (07-03)

Kade has been very sleepy today. The MRI for today was canceled. As it turns out you can't do an MRI with metal still attached to your body. Surgery stopped by this afternoon and removed the 3 staples that were placed after his last surgery. Monday will probably be the next chance for the MRI, we are in no hurry to complete the scan, it is more to prepare for the future if needed.

Kade got a big bump in his "feeds" today. So far, he has been handling it so well they have bumped him up to 10ml an hour and adding another ml every 4 hours. We can now hear his tummy working with the stethoscope.

The doctors are planning to start slowing down on the drugs that are keeping Kade so sleepy. This is the first step in the slow weening process.

To pass the time on this rainy day, Allison and I put together some of our favorite pictures of Kade and the family together along with one of our favorite songs. Hope you enjoy it.

Thursday Night (7-2)

The day went well for Kade. He had a good day of rest and was much more at ease. While he still gets fussy, moans, and cries a little when the nurses have to complete the daily duties, a loving hand from can usually calm him in just a few minutes. Kade is going to have another first tomorrow. To error on the side of caution the Doctors have scheduled an MRI. They will be looking at his brain to see if there is anything is out of the normal. Kade's organs were under a great deal of stress during the first few weeks and they want to make sure that everything is well above the shoulders.

Kade has been getting a small amount of formula in his tummy over the last day. Kade was no small boy to begin with before this all started. He loved to eat and in fact he preferred to feed himself. Cheerios, bananas, peaches, or pretty much anything you would put in front of him he would eat. So finally getting something in his belly again must feel good for him. They are up to feeding him 6 ml over an hour. It takes 30 ml to equal 1 oz, and Kade would have a 6 oz bottle every morning at 6:30 in Daddy's arms just for breakfast. So he is starting very slowly and gets another ml added every 8 hours.

Hanna got to come up and see Kade today. It was great to have everyone in the same room again. It's also been a blessing to have one of us be with her at night and get her ready for the day. She does mention to both of us the she just wants to have Mommy, Daddy, and Kade all home together. So we pray with her at night for God to heal Kade and bring us back under one roof soon. Grandma Ruth was down today to check on her little man, she was so happy to see him look so well. Hanna headed back to spend the 4th of July with Grandma in GI. It's always hard to let her go even for a few days. Prayers do get answered, not always the way we want them to, and not always as fast as we would like. He hears our prayers and knows what we need, he holds us all in his arms and gives us the strength to carry through.

Thursday Morning (7-2)

Kade is doing better today. Getting him back on the medication has really helped him out. He still gets agitated easily, but calming him down seems to take a lot less time. Being able to watch him rest peacefully for a few hours at a time has calmed our nerves as well. He made it a point to let us know at 5am that he is not happy about the tubes on his face. He pulled out his feeding tube and the oxygen tube, but the nurse was able to get them back into place.

The whole surgery staff stopped by this morning to check on Kade. They are pleased to see forward progress and assured us that the withdrawal issues are treatable. Instead of the cold turkey + methadone treatment plan we will be starting a slow wean process. From what we understand it can take 2 - 3 months to get him totally off the drugs. They have also decided that we will not be leaving the ICU in the normal progression method like most children. Since Kade has had such a long and hard road this far they are planning to keep him here until they are for sure he won't have a chance of coming back down. We had hoped that he would make it to the next step and get to a recovery floor by the end of this week. However, staying here in the ICU does gives us a very peacefully feeling like we will gladly continue.

Wednesday Afternoon (6-30)

Kade is getting the rest he needs now. In order to do so the Doctors have decided to put him back on some of the medications. We were all hoping that he would be able to go without them and be able to get by on just the methadone treatment. Methadone is used for treatment of narcotic withdrawal and dependence. He fought a good fight, but Kade is in the drivers seat and his body is just not ready to go without them. They plan to maybe try to slowly wean him down in 12 hours or so at a very slow pace. He continues to need breathing treatments which take a lot of strength out of him.

Kade will be getting a new IV-Line in sometime today. The nurses are starting to have issues with getting good blood samples. The new line gets inserted into the old line and then when it in place in the artery the old one is removed. We were hoping to avoid this by getting the PIC-Line early this week but his veins are to small and to deep to try. Today was a step back, but not totally uncommon from the sounds of things. Were praying that he finds the strength to fight through the next round.

Wednesday Morning (6-30)

It was a very tough night for Kade and Mommy. Kade is now going through a very bad case of withdrawals. His little body is having a hard time coping with the loss of all the medications that he required to get him this far. They did warn us that he can be very hard to watch and that is now a proven fact. His body shakes, becomes feverish, and even though he hasn't eating anything he has vomited quite a few times. He is having a few issues with breathing at the moment which is requiring them to do more breathing treatments. He becomes very agitated and his pulse rate gets pretty high. We just want rest for our little guy, but the treatments are necessary to help his lungs heal and get him the oxygen he needs.

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.