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.