Caden’s Page

I have to stop for a minute and share with you some inspiration. I am going to post a normal update in a few minutes, but first I want to respond to a comment by Hailey’s family on the July 4th posting. If you have not been following Hailey’s story, she was diagnosed with DiGeorge and was born in Boston about a month before Caden’s birth. She spent several months at Duke recovering from a transplant to help repair her immune system. She is home with her family now and doing good. Here is the comment from her family if you have not seen it yet.

Hi Caden and Family;

im so sorry you had to go through this over the weekend but were glad it worked out for the best (Hank)you know what Caden needs are you keep fighting for it… way to go.

I’m glad you got to see the fireworks for your first time its great. Hailey enjoyed them also you two kids are so special its unbelievable. God has given you kids to us for a reason. We are starting to see what that reasone is. You are special and we cant wait to here how good you are doing.

talk soon

Paul,Chrissy and Hailey
p.s. we talked to Dr. Markert today and told her about Caden if there is anything we can do to help let us know

They nailed it. God does not make mistakes. Hailey and Caden are just two examples of how God displays his healing power. Only God could know which parents could survive through the things we have been through so far. I could have never imagined myself in some of the circumstances that I have been through over the past year. Yes, it has been a year this month since we got the initial diagnosis on Caden’s heart. A year ago this week we found out that something was not right on the ultrasound. By the end of July 2004 Caden’s life threatening heart defects had been accurately identified.

As far as the healing, some folks like to give credit to doctors and science. I have found that while many doctors will not openly show it, the most skilled and successful ones are often closet Christians. That has been my experience so far with Caden’s doctors. Doctors certainly don’t wear buttons announcing their faith, but we have found out that many of the key players in Caden’s care are God fearing and give credit where credit is due for the skills that they have been blessed with. Caden’s pediatrician is a Christian and has enlightened us to the identity of some of these other Christian doctors. Some we had already been interacting with during the first two months in the hospital and before we even met Caden’s current pediatrician.

There are several reasons why I got so worked up over the comments from Hailey’s family. I have struggled with whether to or how much to air on this web site at times. Sherry and I have openly discussed it many times. I am sure many of you have thought the same, but I tell you that this little web site that gets well under one hundred visitors per day is touching lives including my own. The story of Caden has brought me into contact with people I would have never met any other way. The same goes for Hailey and her family. Sharing their story allowed for me to find them and gain even more joy and encouragement from what God is doing. These kids are living breathing miracles. If you don’t’ believe it, then ask me to open Caden’s shirt and look at the scars that run from his head to his toes. He has one continuous scar from his neck all the way down and around his belly button, not to mention the numerous other scars all over his legs, arms, and head from IVs and central lines. Only about one in every few thousand children and their families experience anything like this.

Now for the other reasons why I am writing this. I have been very moved over the past two weeks through sermons by Shawn Wood and Mac Lake. I was also very moved as I am always by the First Wednesday service at Seacoast. The worship teams from the Family Life and Summerville services led the praise and worship tonight. That was a treat in itself. The other big reason I am posting this is because I want to share my belief that God is about to show again how powerful he is. Caden is still not swallowing and I believe that problem is about to be solved. I say that with 100% pure faith. The botox treatment might be the delivery vehicle or it might be by pure good old fashion healing, but it is about to happen and you will be the first to hear about it. The subject line of the posting will read “I Told You So”. Until then. If you haven’t got what I got, then you need to get it. That is God and all the gifts he has already given each of us if we will just accept them. The grand prize includes eternal life and the forgiveness of all of our sins through his son Jesus Christ. Other things your get from God with or without believing is his healing power. I get the comfort of knowing it is going to happen because I believe and have faith. I then get to share it with you so that you can have a front row seat to one of God’s miracles.

I hope you are as fired up and excited as I am. Please pray for Caden and Hailey. Please thank God for the things that have already been done and ask God to continue to show his healing strength through these two wonderful children and others like them. Thank God for his protection of me against fear through those that encourage me and guide me though the rough days. Thank God for those who sometimes seem like angels to us when we are down or afraid. One family of angels will welcome their fourth child into this world later today. Please pray for protection of mother and child as the child is born later today into the Young family. These angels are among many who prayed with us tonight.

Thank you Lord for the Pastors, Elders, and Friends of our church who where there tonight and the many nights before. Amen

We got home from the local 4th of July celebration less than an hour ago. Caden got to see fireworks for the first time. Fireworks were a fitting way to cap off this weekend. It was eventful to say the least. Before I get too far into the excitement of the weekend, let me say that Caden is doing great. So don’t let the two visits to MUSC Emergency room scare you.

Emergency room visit number one came on Friday evening. Caden had some mild bleeding from the incision where his surgery was done earlier this month. We have been keeping an eye on it and actually had the doctors look at it earlier in the week. They said to call if it got worse and on Friday evening it did get worse. It was partially due to his tummy time which he really needs. Caden’s tummy exercises helps to build strength in his upper body and arms. This also causes him to lay on his g-tube which has a little disc around the g-tube site. This little disc around the g-tube reaches just far enough to touch the scar from the surgery. This caused the scar to get irritated in that spot and bleed a little. The surgeons came down to the ER on Friday evening to look at Caden. They said the scar looked okay for now but to continue to monitor it closely.

Emergency room visit number two came this morning. Caden’s g-tube malfunctioned and Sherry broke it worse when trying to fix it. The g-tube ended up needing to be replaced. There really was not much anyone could have done to fix the original g-tube once it malfunctioned. The malfunction is can ultimately be attributed to two of Caden’s medications in my opinion. The Calcium and daily Vitamin with Iron are both very oily and cause things to be much more lubricated in places that were not designed for that much lubrication. Anyway, today turned out to be one heck of a battle for Sherry and me. The ER doctor did not want to believe us when we told him that the g-tube could simply be changed out by anyone who knew how to do it since it had been in for more that three weeks. You see, the attending surgeon told us when the new g-tube was placed that it needed to stay in place for three weeks before it could be removed and replaced. After the three week mark from June 6th, it could actually be removed and replaced by Sherry or me if necessary. That is as long as we had been trained on how to do so. Well, today the ER doctor did not believe our story second handed over a Nurse Practitioner who he spoke to on the phone. She told the ER doctor three months was the magic time for having a g-tube in before it could be changed without a surgeon doing it. So we went around and around with the ER doctor until one of the ER nurses got brave enough to call the on call attending surgeon for pediatric surgery to confirm our story. Basically, the logic hit with her. Why would we have an appointment the first week of August to learn how to replace the g-tube if our story was not correct? The first week of August would be approximately two months after the g-tube was inserted. We basically threatened to walk out and make do with the malfunctioning g-tube until Tuesday. The ER nurse saw that we were not bluffing and made the call to the surgeon which of course had more weight than the nurse practitioner who gave the incorrect information earlier. All of this took approximately six hours today. We had patiently waited for over four hours after the first bit of misinformation from the nurse practitioner. We expected to get things sorted out when the pediatrics surgery resident on call showed up and found that the tube had been in for more than three weeks. The problem with this plan was that he keep getting called to more urgent situations and never made it in to see us on our first four hours in the ER. We made it through one feeding with the malfunctioning g-tube while waiting; we were not going to put Caden through a more invasive procedure than was absolutely necessary today.

After all of that we went to the Goose Creek fireworks this evening. I went out and bought a portable fan to help keep Caden cool. This was just about the best twelve dollars I ever spent, plus about ten dollars for the eight D-size batteries. The fan worked great. You can see Caden and I chilling in front of the fan in the tent in one of the few pictures I posted tonight. Yes, the tent works great for giving Caden and Riley a cool place to hang out while waiting on dark to come.

Don’t forget to check out the new pictures.

Oh yeah..I had to come back and add this note. Caden is pushing 16 pounds now. He was weighed today at the ER at 15 pounds 15 ounces.

Caden continues to do great. Everyone who sees him says he has grown so much. He has been a very happy little boy lately even with the teething.

We have a praise report. We received a donation to help fund Caden’s nursing care until the Medicaid Waiver comes through or until we get Caden’s swallowing problem treated which ever comes first. This is just one more testimony that God answers prayer.

If you believe, you will receive whatever you ask for in prayer. Matthew 21:22 (NLT)

There are new pictures from the past couple of weeks posted on the pictures page. You will notice a new format on the main gallery page to match the theme throughout Caden’s site. I have also updated the About page to include Caden’s current condition and current challenges we are dealing with at the present. Please take time to check these pages out.

Caden is doing great. He has been without reflux for over two weeks now. We are still suctioning him with the suction machine quite frequently due to secretions. His secretions and saliva seem to have increases significantly due to cutting teeth. He has his second tooth in as many weeks coming in right now.

Sherry is getting out more with the boys. Yesterday she went to the water park with them. She hired a baby sitter to help with Caden so she and Riley could have some quality time at the park playing in the water. She said it was absolutely awesome. Riley’s vocabulary is exploding and he is a hoot to listen to these days.

Sherry took Caden for a follow up appointment last week with the surgeons. They said Caden is doing great with his recovery from the Nissen procedure. The surgeons have given the green light to go forward with the botox treatments as soon as we can get it scheduled. We have an appointment with the ENT on July 12th to discuss the botox treatment. The botox injections that would go into the muscle tissue of the upper esophagus is supposed to correct Caden’s swallowing problems.

I have been asked about the ads on the side of Caden’s Page. They are there for two reasons. (1) They do generate a little bit of income to help offset the cost of this web site. (2) They are part of a test to see how some of the more popular affiliate programs work. An affiliate program is where an online retailer like Amazon will pay me a percentage of every purchase made when a customer visits they site via one of my links. Yes, I have received a couple of small checks in the past so I know it does work. Caden’s Page does not generate a ton of traffic from people other than friends and family, but there is the occasional visitor who finds Caden’s Page from a search engine. For instance, if you go to Google and search on “Caden” you will find Caden’s Page as the fifth listing out of about 116,000 as of this morning. Why you ask would anyone search Google for “Caden”? Well, it is an increasingly popular name and some would be parents just want to see what they can find out about the name. For instance the name Caden means “fighter” according to babynamesworld.com. Caden’s middle name “Gabriel” means “God is my strength”. Quite appropriate for this little boy wouldn’t you say?

Anyway, I wanted to fill you in on why you see ads on Caden’s Page. A few of the ads I can choose. The Google ads in particular are based on content of this page and they generated automatically when Caden’s Page is updated. I have not tried all of the products and I do not endorse all of the products that you see on the side of this page. If I link to a product in a posting, then you can safely assume that Sherry, I, a close friend, or family member has tried the product. We will usually even state that when we link to the product. I do not make a ton of money off of these ads. For instance, I get a single digit percentage of purchases made on Amazon. I get a few cents for each Google ad that is clicked and I get even more if they visitor actually buys somethings. The other ads vary in commission. To date, I could not buy my family dinner with the total amount I have earned off of hoei.com so far. The site does cost me little per year plus the time I spend updating and maintaining it. I do have total control over the content and have placed the ads by choice.

All of that said, I do want to extend an offer to any of you. I want to help other people post blogs, web sites, and more. I am searching for ways to make money on the side. I am going to be working with other web site developers to generate the look and feel of the sites to meet the needs of each person or company. I am willing to host some blogs for free as a directory off of my main hoei.com web site like the The Tech Land of Ozz. You can help me build a client base while you take an opportunity to share information or opinions on a subject of your choosing. I am working on a terms of service document that will basically ask that you keep it clean and I will agree to keep you running. If you want to do it but want to have your own site (i.e., www.[whatever].com, then I can help you with that too. Just drop me an email and let me know if you are interested. You do not have to be local to me and you do not need to know how to do anything more than send and receive email. Contact me at: hank.osborne@hoei.com if you are interested.

I can create a web site for just about anything you want whether it is informational, selling a product, jokes of the day, or whatever. I can set up shopping carts to accept online payments including credit cards. The root of my idea is driven by my desire to find a way to work from home and not have to travel. If one of my crazy ideas works out, then I may get to a point where I can spend more time with this wonderful family and not have to travel without them anymore. Wouldn’t you like to help fill that wish? Sherry is interested in starting a couple of blogs, but she will not be able to post frequently enough by herself. I can set up multiple people to be able to post to the same blog. Sherry’s ideas are: Stay at home Mom Resources, Home School Information, Education Information (Public, Private, and more). If you have an idea or want to help Sherry with one of her ideas, then just let me know.

Hank O

I am back from my trip to the Secret City. I spent a couple of nights in Oak Ridge, TN. This is the location where the root of the nuke was assembled for the beginning of the end to WWII. I could tell you what I was doing there, but I would have to kill you.

The real story is here in SC. Caden is still doing great. Sherry weathered the last two nights without any assistance from a nurse. Tuesday night was a little harder than we expected it was going to be. She found that the early morning shift that I normally take is not always a cake walk. Caden often starts stirring between 4AM and 6AM with multiple messy diapers. And believe me when I tell you that this little boy does not like a dirty diaper. I forecast potty training to be completed in less than fifteen minutes when he gets old enough to undress himself.

Anyway, back to the story. Caden is also cutting teeth which means his secretions are increased. This requires more frequent suctioning. That keeps us active throughout the night making sure he does not get gagged on his secretions. Tuesday night was so hard on Sherry that I called a sitter to come over Wednesday night after Riley went to bed. We have used this sitter for a couple years and she is great. Unfortunately she went off to college last fall and we only get to use her during college breaks. She came over a few weeks ago and met Caden. Sherry showed her how to suction Caden and she was comfortable with watching him. She came over last night to give Sherry a chance to sleep a few hours. The really cool thing is that there is a program that will help pay her. It is a respite program through Easter Seals. Sherry got a little sleep and we did not have to foot the whole bill for Caden’s care.

On the nursing front we officially have only one more nursing visit that my insurance will fund. The insurance through my employer allows for up to 60 visits per contract year when home nursing care is necessary and approved. There is still an LPN shortage. That is why it has taken us five months to use 60 visits. For example we only have a nurse scheduled for one night out of the next ten days. I spoke to the agency today that has supplied 90% of Caden’s nursing coverage in the past five months. They have recently run ads in the paper for LPNs and have got no response.

The Medicaid Waiver application process is still ongoing. Caden was denied by one agency, but the case was referred to another that can override the denial. The bottom line is this. If you have a child that requires nursing care they had better fall into one of the following categories or you will have one heck of a fight on your hands trying to get approved. The child has to (1) be on a ventilator, (2) be mentally retarded or have something related to mental retardation, OR (3) have a spinal or head injury. That is it. If you have a child requiring nursing coverage under the Medicaid system that does not fall into one of those areas, then you are almost out of luck. I did say almost. There is some degree of subjectivity in the process somewhere, but getting your application in front of the people who have the authority to review the case is ashell game. We find now that we are ending back up talking to people that we talked to months ago when we were getting misled by Caden’s first Early Interventionist. This is a VERY frustrating process. I try to shield Sherry from the logistics of dealing with all of the Medicaid and insurance red tape. I ask her to focus on making it through a day with these boys in the best way she knows how.

I know this was a lot of information, but I have not previously shared all of the dirty details on this Medicaid process or the Easter Seals funding. There are people who find their way to this web site by chance. Some are searhing for answers to their own battles with find care for their loved ones. I track postings and comments on other children’s pages who have been diagnosed with DiGeorge. I sometimes share a link back to Caden’s Page on other sites. Some people find this site by searching for things on Google like Caden, LPN shortage, DiGeorge, infant heart surgery, or even God. Anyway, now you know more on the story of our Medicaid struggles and hopefully our lessons can help others understand if they are searching of answers on how it works.

Caden had a couple of visitors today. The physical therapist and nutritionist visited today. Caden is now weighing in at 14 lbs 11 oz and is a little over 27 inches in length. This puts Caden right on the 50th percentile in length for his age. He is very near to the 5th percentile in weight for his age.

I have a special prayer request for Sherry. Sherry will be going solo overnight with Caden for the first time in the next week. My travels will have me away for two nights and we will not have a nurse. Caden is doing great and will be fine, but it is still a big step for Sherry. Please pray that Sherry will have peaceful nights without fear or worries.

I have been asked how the Medicaid Waiver process is going. The approval has still not been completed. Even if it were approved today, we would not be able to use it due to staffing problems.

We hope and pray that we get some solid information on the potential botox treatments for Caden’s swallowing problems. We plan to go forward with this treatment as soon as possible if all the doctors involved agree that it is the best coarse of action.

I was hoping that Sherry would get a chance to write this, but she did not have time this past weekend. You see there is more to the story of Caden’s return home from the hospital. The surgery he had did not relieve us from carrying any equipment that we were issued to help take care of Caden, but things did change rather significantly. The surgery did was take away the more emergent aspiration risks caused by the severe reflux, but that is still not the whole story.

The real story is that Caden has been a new child since returning home. It is noticeable by everyone in our family. Caden has been so much happier. He smiles more. He plays more. Our best guess is that Caden must have been having more reflux than we realized. He is not having the regular fussy spells that were happening multiple times per day before the surgery. We now realize that there must have been many more times per day where the reflux was happening but could not be seen. We could outwardly see the severe reflux episodes where stuff came shooting out of his nose and mouth. I already thought Caden had a great temperament, but now he has stepped it up a notch.

If you ahve a high speed connection and can watch video on you PC then I have a little clip of Caden playing in the floor last night. Here it is:

Video of Caden Playing – approx. 45 Sec long – 13.5 MB File

Have a Great Day!

This story brought tears to my eyes.

Thanks to Michelle Malkin for leading me to this story.

Caden is still doing good. I am not going to write much today because Sherry wants to post some more details on Caden’s recent progress. I have been giving you the facts, but Sherry wants to give you our feelings about Caden’s recent surgical procedure.

In the meantime I have something new for you to look at. I have been working on a picture gallery for Riley. I have completed a page displaying Riley’s first year. You can find Riley’s Picture Page here.

I hope your weekend is going as good as ours.