Caden’s Page

It has been a long week trying to figure out how this pacemaker thing was going to shake out. Sherry and I have struggled with this pacemaker situation. The root of our struggle has stemmed from the fact that it takes a fairly long time to get results back from halter monitors. That is the little pager-sized heart monitoring device that attaches like the telemetry monitors used in the PCICU and step-down unit. Once the data was analyzed the cardiologist and surgeon immediately called us to schedule Caden for surgery to repair the pacemaker. We are told that the halter monitors are still detecting heart blocks and what the cardiologist calls wide complex escape beats. We are told that this shows itself as a much slower heart rate (approx. 40 beats/minute). This heart rate is way too slow for Caden. He baselines at above 120 beats/minute these days. He regularly gets up in the 150 range or more when retching. The cardiologist and heart surgeon’s sense of urgency to get this repaired is impressive. We have expressed our concerns about it taking what seems to be more than a month to get halter monitor and pacemaker weekly downloads analyzed. We did not even know there was a delay and thought they were on top of the data. To us, no new was good news. We hope that data analysis improves moving forward so that we don’t get such a false confidence in the stability of the pacemaker functionality.

We have a tentative surgery date for next Tuesday September 19th. There are some twists that may change that date. The subject of an MRI has come up. The pediatric orthopedics folks really want to get a look at Caden’s back and spin with an MRI. They believe that there may be some Nero-surgery that can be performed to reverse the scoliosis progression. I wrote more about this in my August 31 post if you want to read more. The cardiothoracic surgeon is on board with coordinating an MRI during the pacemaker repair. The MRI can not be performed while the pacemaker is inside Caden’s body, so they are planning on removing the pacemaker, rolling him to radiology for an MRI, and then taking him back into surgery to complete the troubleshooting and repair of the pacemaker. All parties involved believe the benefit of the MRI in this case outweighs the increased risk of infection caused by moving a patient from surgery to radiology in the middle of a procedure. Since there are close to a dozen doctors and departments that have to be on the same sheet of music for this, we have been told that we must be a little more flexible in our scheduling to get this MRI completed.

Caden is doing great over all and you would have no clue that he even has a pacemaker, feeding tube, or fuss over an MRI. Caden and Riley both have shown signs that they understand more of what is going on than Sherry and I sometimes realize. They are both smart boys and have spiritual hearts the size of Texas.

Caden’s physical and communication skills amaze us and his therapist on a weekly basis. Caden is so interested in doing whatever Riley is doing. He is standing without assistance on a regularly and we believe he will be walking without assistance before his second birthday on 11/2. He stands up in his walker and takes off through the house without any assistance now.

Please be prepared for a few extra posts as things heat up in the next week. I will be keeping Caden’s Page updated more regularly until we through this. Thanks in advance for your prayers. We continue to need prayer for strength in our faith in God to see us through. I have been shown Proverbs 3:5-6 on several occasions this week by different sources as I have been seeking God’s will in this situation.

“Trust in the LORD with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will direct your paths.” (NLT)

Many folks like to pray “If it be your will God”. I believe that God makes his will known to us very clearly in His Word. God wants Caden healthy and whole. What that will look like and how God will deliver it I am sure will be as surprising as anything I have ever experienced. I continue to stand on Mark 11:24 where Jesus gives us this promise.

“Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.” (NIV)

I am praying that Caden’s heart functions perfectly and that there will be no need of a pacemaker repair. Caden has been healed in Jesus’ name.

The cardiologist have agreed to perform a complete test of the pacemaker during the pre-operation visit. I have faith that God will see us through in a way that he will be glorified most. I am no longer moved by the attempts of the enemy to tear down our faith through fear of the “what if’s” that come with situations like these. I thank God for this circumstance and pray that His power and love shine through it all.

“For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.” 2 Timothy 1:7 (KJV)

There is a ton of fear that can crop up when you are faced with things like this. God’s Word is clear on how we should respond to fear. I faced a lot of fear as a child and came through it standing on this scripture. I continue to stand on 2 Timothy 1:7 today.

If you are in the Charleston area and want to start to understand a little more about how we come to faith in God like this, then join us as we go to hear Charles Capps this Friday night here in Goose Creek, SC. If you don’t ahve a church home the please join us at Seacoast Church for a weekly dose of worshiping God, faith building, and spiritual growth. Don’t take my word for it, come and experience God for yourself.

I hope you enjoy these as much as I have. Caden was watching Stanley the Stink Bug Goes to Camp when I took these. I must have taken 30 shots to be able to capture these faces.

You can click on any of them for a larger image. Enjoy!

Oh yeah…The video in the previous post was broken for a few days. It is fixed now and can be viewed HERE. Please don’t hesitate to let me know if you find something broke. I only got one email from my buddy CJ telling me it was broke.

The past month has been fairly quiet, but it has come with some fun. We took a road trip to see Grandma and Grandpa in Atlanta, GA a few weeks ago. This was our first trip to Georgia this year. It was pretty big event since it was the first time Sherry has been under the same roof with both of her siblings at the same time since we started dating almost nine years ago. The first two pictures in this post were taken while at Grandma and Grandpa’s house. We all had fun and look forward to seeing Grandma and Grandpa again soon.

I added the picture on the right because to me it seems to capture the growth and maturity that Caden has shown in the past few months. Caden amazes us almost on a daily basis with his communication skills. A few days ago Sherry saw Caden pick up one of Riley’s puzzle pieces. We normally don’t let Caden play with the puzzles because he still likes to chew on things, and you know what cardboard looks like after it gets wet. Sherry started towards Caden to take the puzzle piece. Caden turned and dropped the piece into the box and then signed “clean up”. This past Wednesday, we were having our weekly breakfast for dinner night. Sherry gave Caden a little jelly to eat. She asked him if he liked it and he nodded yes and signed “more”. He just moved the jelly around in his mouth instead of swallowing it, but he did seem to enjoy the taste. One day last week Caden signed that he wanted a bath. Last night Riley was getting a bath at the time Caden was getting put to bed. Sherry brought Caden in the bathroom to say good night to Riley and me. She then took Caden in a laid him in his bed. He immediately raised his arms as he does when he wants to get “up” and started whimpering. He obviously wanted to take a bath. Caden loves taking a bath almost as much as Riley does.

This picture shows Caden’s awesome physical progress. Caden is regularly standing for as much as a minute without holding on to anything. He has taken a few steps without the walker, but he still needs to build his confidence a little more. You can click HERE for a short video that was taken on Friday 8/25/06. That is just over a month after after the last video that was posted back in July. The video in July was taken before we unlocked the front wheels on the walker. The walker still has little latches to keep it from rolling backwards, but Caden can now steer it for himself. Caden is actually stopping and clapping his hands in excitement at times. He is also stopping, stooping down to push his toy car, and then standing back up so that he can use the walker to catch up to the car.

There is no new information to share on the pacemaker. We did the halter monitor and returned it in person the next day. We have also downloaded the pacemaker data via the telephone several times. We have not heard a word from the cardiology folks at MUSC.

We did take Caden in for a visit to the orthopedics team a few weeks ago. Caden was diagnosed with scoliosis back in February. We didn’t realize it back then, but there was key piece of information that would have been very helpful when making decision on the pacemaker. It seems that if Scoliosis progresses, as it has with Caden from 20 degrees to 40 degrees of curvature in six months, that there is a test that can be done to determine if a neurosurgeon can help the Scoliosis. The test is an MRI. Unfortunately, an MRI is one of the few things that a person with a pacemaker must strictly avoid. Had we known about an MRI possibly helping to determine a course of action for the Scoliosis, then we might have asked for the MRI before the pacemaker was implanted. Even though the pacemaker and or the lead may not be functioning properly, Caden can not have an MRI because of the effects the magnetism can have on the pacemaker and lead. This situation exposes our one real complaint about MUSC. They just don’t seem to have services to support patients with coordination between multiple clinics. Patients and families of children with multiple serious diagnoses are not well supported from a holistic perspective as far as I have seen in the past two years.

Enough about all that health stuff. Let’s get back to some more fun. The last picture in this post is of me and the boys at the water park back at the end of July. It was a great day. It was Caden’s first time to the water park and he and Riley loved it. Sorry for the nasty crop job. Oh, an I loved it too, even though it seemed like it was 153 degrees out there.

I want add a short note about the email list. You can subscribe to Caden’s Page by following the instructions on the subscribe link found in the sidebar. I have also added a page called Whitelisting Instructions if you once were receiving the update notifications, but are no longer getting them.

I encourage you to check out the September Daily Bible Reading schedule on my personal blog. God has spoken to Sherry and I in so many ways through our reading on that schedule. Everyone who wishes to seek God’s will should get into the Word on a daily basis. You will also find the first blog post by Aunt Robin titled Granny’s Helper. God Bless you all and thanks for your prayers!

First of all, Caden is doing great. All his scares have healed from the June heart surgery. Caden and Riley have got to go to the water park twice in the past week an a half. They both absolutely loved it.

The main purpose of this post is to ask for prayer for us this week. This past Wednesday Caden had a six week post surgery checkup after getting the pacemaker. The tests run on the pacemaker itself went fine last Wednesday. The doctors and the technician did not get expected results when trying to pace Caden’s heart with the pacing device. The device was reporting that it was sending the signal, but Caden’s heart rate did not rise as they expected. They sent us home on a halter monitor which we hand delivered back to cardiology the next day. They said it would be the first of the week before the data could be analysed. This whole event has led the cardiologists into have discussions with the surgeon concerning the pacing lead. The lead was x-rayed and found to be in the proper place and without damage. The heart surgeon was out of town last week and we were told to expect a call early this week to hear what they recommend as a next move.

Caden also had his first swallow study since the June surgery when the artery was removed from protruding into the esophagus area. It was one of the best swallow studies he has had yet. It was not good enough for the feeding therapist to recommend feeding him by mouth for anything other than therapy right now. We will be meeting with the craniofacial team on the 15th to hear what they have to say.

Please pray specifically for Caden to be healthy with a fully functioning heart and digestive system without a need for any surgeries, procedures, pacing devices, or any other medical equipment. We have all seen what God does when we ask in prayer and believe.

Caden has been working with physical therapy to get him closer to walking unassisted. Our goal is to get Caden walking without assistance before Riley’s birthday which is a couple weeks before Caden’s birthday. The walker is on loan because Caden is not expected to need it for very long.

It has been an exciting few weeks in the Osborne camp. Sherry and I have been to Texas and back since my last posting. During our trip we were informed by Nana (my mom Priscilla) that our little boy Caden was really picking up the pace on his walking skills. So I figured that I would make a short video to share this blessing with you here on Caden’s Page. My mom along with some assistance from a regular sitter (Miss Audra) and my sister (Becke) watched Caden and Riley while Sherry and I were in Dallas.

The trip was great. Our primary reason for the trip was to attend the Growing Families International conference. We did that plus got to visit with some of Sherry’s family. You can get a little taste of what came out of that portion of our visit to Texas by reading my post on Dimensions in Cake. Sherry got to see some family members from her birth family (Sherry is adopted) that she had not seen in approximately 17 years. It was a great time of healing for Sherry and her family.

The BIG news of the day is that our little friend Noah is resting good in the PCICU tonight after going through what I believe is his fourth open heart surgery to get the Fontan procedure done. Noah had a long day starting at about 5:30AM. His mom has done a great job of keeping us updated via Noah’s CarePage. She has even posted a few pictures of him. He was still on the respirator as of her last post. He is being put on lasix to help with fluid build up. Lasix is a diuretic given as a standard for just about every heart surgery. Caden is still on lasix from his surgery back on June 15th. Please continue to lift Noah and his family up to the Lord in your prayers. Please pray specifically for a rapid and smooth recovery for Noah.

Caden is still recovering well from his surgery. He has been cleared for just about every normal activity except the water park and other pool type activities. The doctors want all of his surgery wounds to scar over before being submerged in water, especially in a community pool setting. We did break out the kiddie pools here at home yesterday, but made sure Caden did not get in above his waist. The only cut that has not scarred over is the one on his back where they went in to cut the artery going to his left arm. That cut is in a spot that moves a bunch. It also gets rubbed on when he lays down on his back. The scab even broke loose on that one a little bit on Friday evening and it started bleeding. It made for a little excitement just before the final session of the Growing Kids God’s Way class we we have been hosting in our home since January. It was nothing a bandage and some tape couldn’t fix. We took Caden in Monday just to get the incision looked at and to get him something for the congestion he has battled for a few weeks now.

Other than that, all is well. Oh yeah, I have posted a few (21) pictures. Two of the pictures are a little graphic in that they show Caden’s surgery wounds, so please be aware of that fact in the event the medical stuff makes you queasy. I added them so you could see just what was done during the recent surgery. Oh yeah, HERE are the pictures.

Please pray for my little VW Jetta. It went into the car hospital on Friday with an high fever and a runny hose. It was transferred from the local car hospital (garage) to the VW specialist in Mt. Pleasant on Monday to get cooling system surgery. I should get it back tomorrow after the special order part arrives and is installed. They will have to pressure test the system one more time after replacing the leaky part. I am told by the dealer that if the water pump is bad as expected by the local garage, the 100,000 mile warranty on that year model should cover it. The car has over 99,000 miles on it right now. How’s that for timing? Coincidence? NO WAY!!! God knows exactly what he is doing even with my little VW.

May God’s blessings be with you and your family. Just trust in Him.

The following picture was taken Saturday afternoon out at Folly Beach exactly one week after Caden was moved out of the PCICU following his heart surgery.

PRAISE GOD!!! What a joy it is to see Caden doing so well.

It has now been just over ten days since the surgery for Caden. He has been back in for follow up appointments with his pediatrician, cardiologist, and ENT doctor. All are pleased with Caden’s recovery.

Caden was pulling up into a standing position within 48 hours of his discharge form the hospital. He has been performing most of his normal daily activities short of physical therapy.

Today Caden had a hearing test and passed the test on his right ear for the first time ever. It looks like the tube is doing its job. The ENT wants Caden to have another modified barium swallow on July 17th. We are praying for the healing of Caden’s swallowing problems to show during that test. Caden will resume feeding therapy this coming Friday.

Special Prayer Request for Noah

Noah and his family attend Seacoast Church and they have been faithful supporters of our family over the past couple of years. Noah will be going in for another open heart surgery this Friday at MUSC. He was diagnosed with a condition at birth which required major reconstruction of his heart through several operations. The end result is that Noah will have a heart functioning with fewer chambers than you or I have working for us.

Noah was born with Hypoplastic Right Heart Syndrome on Feb. 22, 2003. He has had 3 open heart surgeries thus far. A BT shunt at 9 weeks, a pulmonary banding at 10 weeks and the Bi-Directional Glenn at 10 months. Noah goes into MUSC Friday 6-30-06 for his final surgery, the Fontan! Please keep him in your prayers!! (Quoted from Noah’s Carepage with minor editing to add the actual surgery date.)

Noah’s mom Ashley has been doing a great job with keeping folks updated through Noah’s Carepage. I have been given permission by Noah’s mom to publish a link to Noah’s Carepage. You will have to sign up for an user id to be able to view the page and then you can choose to get an email each time Noah’s page is updated.

Noah’s parents Ashley and Jimmy have been fighting to stay strong going into this week. Please pray for Noah and his family this week. The feelings that a parent has associated with handing a young child over to a heart surgeon are almost beyond comprehension. Your prayers and love for this family will make all the difference in the world.

What a wonderful Father’s Day present to have my little boy Caden get to come home from the hospital. Praise God for the small miracles. This picture was taken in our living room this afternoon. He is playing with a stuffed animal that our friend Angela brought to the hospital for Caden while he was in surgery on Thursday.

Caden was discharged barely 24 hours after leaving the PCICU. We got moved to a room on 7C yesterday and found ourselves almost immediately asking, “what are they doing for him here that we can’t do at home?” It was a valid question that led to a discharge. Praise God!!!

Please continue to pray for Caden’s rapid and complete recovery. We are praying that Caden will be comfortable and that both of his eyes will stand wide open. There is no value in stating the obvious and there are no known medical treatments according to the doctors. Medical studies show that symtoms often get better with time. I do not plan to give any other great details about this prayer request for Caden’s eye as I believe we should speak life over things in Jesus’ name. You can click on the picture below to see what Caden’s eye looked like yesterday.

This picture on the right is of Caden and Riley while in 7C just after moving out of the PCICU. My mom brought Riley down to see Caden and it made Caden’s day. He got the biggest smile when Riley came up to his bedside. Riley has been so compassionate towards Caden. I can not even begin to put into words the joy that I felt seeing how Riley treated Caden this weekend.

I am a blessed Father. I am honored and humbled to have been given such an awesome responsibility. I pray that these boys will see their Father in heaven though my my life. This has truly been a great day and I give God all the glory for the joy that I felt when reading the card that Riley and Caden gave to me today.

We got settled into 7C pretty well. Caden continues to do good. Sherry and I got Caden off to sleep tonight so that we could have a romantic anniversary dinner. Okay, I am sure Sherry would say that romantic is not the right word. We had Kick’n Chicken delivery on paper plates by hospital room lamp light. We tried creating a little mood by eating with only the glow of the telemetry box LCD display, but that thing just does not give the same affect as candle light. The Kick’n Chicken is not exactly our idea of a romantic anniversary meal either even though many of the natives in these parts might disagree with us.

All kidding aside, I want to say that we feel so blessed in terms of our situation with Caden. I know that may sound weird with my child lying in a hospital bed tonight with cuts all over him like he has been in a knife fight. What I am getting at is that we have been reminded this week of the struggles that families go through with heart babies. Caden had some neighbors in the ICU this week who were dealing with some tough stuff. We watched a few slide back. Some of these kids even do it without a parent at their side and I wish I could understand what circumstances cause this to be so. I guess I just saw things differently this week because I was not torn up emotionally like during Caden’s first surgery back in 2004.

We went in on Thursday and have seen pretty much what we expected with Caden’s procedures and recovery. The same is not true for all families who have traveled the same halls and rooms that we have been in this week. Our week did not come without emotion and tears for Caden and ourselves, but I can say for certain that I am thankful for the few tears we did experience. Some families around us had to endure some hard times this week.

We thank you for your prayers and we ask you to continue to pray for Caden as well as the other children up there and especially those without parents at their side. You have to be staff or official volunteers to physically help comfort these babies so I can only ask for your prayers.

We have friends locally and on the Internet who have struggles that make our situation look like a picnic. Please also pray specifically for Emory, Alex, Callie, Noah and their families in the coming days and weeks. All of these children and families need all the prayer support they can muster.

I have been asked by some what they can do for us. I will say that meals at the hospital can be tricky when Sherry or I are alone with Caden. We can not leave him for an extended amount of time. So bringing something to eat for which ever one of us is at the hospital can be a big help at times. Just a visit from a friend without food is nice too, especially when we are up there alone with Caden. While visiting us, you think that we seem busy as bee with Caden’s tube feed, suctioning, giving medicine, flushing his tube, and of course the trusty old diaper changes, etc. If you can stomach being around that kind of stuff without being guaranteed any focused conversation, then the adult interaction is a nice mix to those activities for us. We are in the 7C unit of the MUSC Children’s Hospital in downtown Charleston. Call before you come though, because we known to drum up some discharge papers quickly. I am not sure if they get tired of us or they just trust us to act in Caden’s best interest, but they do seem to let us go when we start to ask for a discharge.

Thanks again for your prayers. Happy Father’s Day to all the dads reading this!!!