Caden's Page

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.

To God be the glory for all Caden's success. This little boy is living proof of God's power.

Caden was released from the hospital at about 5PM yesterday. He would have probably been released earlier but the doctor who had to make the final decision was in surgery most of the day.

Caden did have some more blood tests run while in the hospital. We took the opportunity on Monday to get some blood drawn for some lab work while Caden was under anesthesia. He is very hard to stick due to small and curvy veins. Several doctors needed tests run. We got all their lab orders together and had the blood drawn while Caden was unconscious to minimize his discomfort.

All of the tests came back looking pretty good. The only one that was border line was the immunology. The immunologist met with Sherry and me today to discuss the results. There seems to be very little research on kids with Caden's immune disposition. Caden is technically considered to be partial DiGeorge simply because he does not have a severe immune deficiency. Caden is considered to have a mild to moderate immune deficiency. What this really means is that he is limited in the vaccines he can receive, non to date. We are waiting on a few more lab results before a recommendation is made to allow him to get live vaccines. (i.e., chicken pox, MMR) This is not a huge deal right now because those are not normally given at this early age anyway. There should also be some precautions taken when around other people who have had live vaccines recently. That includes the ones I just mentioned as well as some vaccines that are given to folks preparing to go into a war zone.

We do anticipate a trip to Duke in the near future. There is a doctor up there who is one of if not the world's leading immunologist. She is the doctor who cared for the little girl whose Grandparents posted a comment on Caden's Page on June 3rd. This little girl's name is Hailey and she got to go home on Tuesday for the first time in months after being at Duke for a transplant. Her immune system was in much worse shape than Caden's. Hailey is about a month older than Caden and was born in Boston where she had heart surgery shortly after birth as well.

We are also considering a trip to New Jersey before we talk to the ENT (Ear, Nose, and Throat) doctor about the possible botox treatment for Caden's swallowing problems. There is a specialist that used to work at CHOP who now runs a pediatric feeding clinic in NJ. We will keep you posted on this as we get more information.

This has been a tough few days, but we believe that things are already better. Praise God that Caden has not seen a reflux since last weekend. Caden does have some retching spells, but they are milder than the ones he was experiencing before this surgery and they seem less frequent as well.

Please keep us in your prayers. We still have a few tough decisions to make and a ton of information to process. Just ask God to help us see though to the most important things to help us make the right decisions for Caden.

I don't know why, but I feel inclined to say hello to Eric and Karen this morning. I think about you guys often and hope you are doing well. My thoughts and prayers are with you.

HO

I spoke with Caden's doctor already this morning. Caden has tolerated two feedings overnight that were enough to sustain his normal diet. He shows a little discomfort near the end of these full feedings, but he is having no significant problems.

The doctors in charge of Caden's care are meeting this morning to discuss his possible release later today.

Don't forget to see the pictures from last night and the two postings form yesterday.

HO

Here is a preview of the pictures that I took tonight. Click on this picture below to go see the others.



Here is a MP3 audio file of Caden's babbling from tonight as well.

Caden's Voice (Fairly small at 138k)

I am sure the items above do a much better job than me at telling how Caden is doing tonight.

Caden is on his normal food mixture (formula and mom's milk) at a lower amount than normal. We are slowly increasing it and should have him back to a full feeding amount by late morning tomorrow. Given his current progress, I would expect for him to be discharged no later than Friday if not tomorrow.

Caden has had a good night. He started on clear liquids last night via his g-tube. He has been getting an once every three hours just to make sure his system tolerates it. He seems to be doing fine with it and he will probably get some formula mixture later this morning.

I have been asked a couple of times why Sherry and I do not seize this opportunity to stay home and get some rest. Well, I have a story from yesterday that explains very clearly why we stay with Caden 24/7 while he is in the hospital. It was about 7pm last night when Caden's nurse came though the door with pedialyte, bottle , and nipple in hand. She had been instructed by a doctor to give Caden his clear liquids by mouth. This doctor had never seen Caden before and the nurse had tried to explain to him that Caden was not able to swallow. He told her that his swallowing problem had been fixed and to give him the liquids and all of his medicine by mouth. He was wrong.

Sherry was standing by Caden's bed when the nurse came in with the bottle and nipple in hand. Sherry's eyes got very big and she asked what is that supposed to be for. The nurse explained and Sherry in turn asked to speak to this doctor. He came in a few minutes later with an "I am the doctor here and you should not question my judgment" attitude. Sherry tried to explain to him that the surgical procedure that Caden had this week was not to correct swallowing problems, but was rather only addressing the massive reflux problems. She explained that this surgical team was not even the people who Caden would see to get his swallowing problem treated. This doctor would hear nothing of it. He refused to change the order to feed Caden by mouth. He said that he needed to talk to the surgeon who knew and had been working with us. He said that for now he would go along with giving the fluids by g-tube since it would really make no difference in the process of testing how Caden's stomach was going to react to the food. Just a note: This was not a student or resident. This was the attending physician on duty last night from pediatric surgery.

Sherry ran into this doctor on the way out of the hospital last night and he said that he had spoken to Caden's regular surgeon over the phone and that things had been cleared up. He had removed the order from Caden's record to give him things by mouth.

I still wanted a shot at him once I got here about an hour after all of this happened. I was not happy with how upset he had made Sherry. She was flushed red like she gets when she is extremely upset or nervous. I still plan to voice my displeasure with a senior member of his staff. He needs to realize that there are parents who know their children's health better than their own. Ten years of education and even more on the job experience does not make you immune to making mistakes. In this case, his mistake could have easily caused Caden to aspirate and possibly get pneumonia.

This is a prime example as to why we stay with Caden even when he is hospitalized. He still needs to be suctioned at least every hour or two even when he is sleeping. His secretions collect in his throat and start to gag him if he is not suctioned out every so often. The nurses up here are assigned multiple patients and can not monitor Caden as much as it takes to make sure he does not aspirate on his secretions.

On a positive note Caden just went a five hour stretch without any pain medicine. He is allowed to get it as often as every two and a half hours. He has been resting good.

Sherry took time to go out to dinner with a group of mom's from the church. They had to call and remind her due to all the excitement with the doctor last night.

Lesson for the day: No one is going to care for your child the way you do. Even the nurses who have likely spent more time with Caden than anyone else outside of our immediate family gave in to the pressure of the doctor yesterday.

Want to read more technical stuff? Here are some links:

Nissen fundoplication
Dysphagia
Achalasia (Possibly a better description of Caden's swallowing problems than anything I have found.

Thanks again for your pray and support.

Caden had a pretty good night. He was restless at times and was given some pain medicine. He continues to go longer between the doses of pain medicine. His fever has gone down as well.

The surgical team just came by to check on Caden and they are pleased with his progress. He is on track to possibly get clear liquids in his stomach later today.

Caden's surgery went well today. Things went pretty much as advertised and there were no major complications. Caden was awake and in his own room by about noon today. He is being given pain medicine at least every three hours to comfort him. He has a little bit of a fever that is most likely a side effect of a one of the medications that he received during surgery. Sherry and Aunt Addie are with Caden until later tonight. I will relieve them by 9pm and be staying with Caden through the night.

Caden was admitted to a room in the MUSC Children's Hospital in the cardiac ward (7C). This is a comfortable place for us. There were three nurses and one technician on duty who recognized us when we came through the door. They know Caden well and are taking good care of him.

Thanks for your prayers and support. I will keep you posted.

We were contacted by MUSC yesterday as expected with scheduling information. Caden has a 6AM show time for Monday morning. They have him on the schedule from 6AM to 11:30AM. We believe this includes recovery room time. We will be at the 4th floor surgery waiting room of the main hospital at MUSC before and during the surgery. Caden should be in his own room in the children's hospital by early afternoon.

We are very nervous. We are asking God to give us peace with the decision to get this procedure done. We know our biggest enemy here is fear. I continue to try and stand on one of my favorite Bible verses of all time,

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)

Many of you have sent emails assuring us that you will be praying for Caden. I ask all to add Caden to your prayer lists at church this weekend especially for this surgery on Monday morning. This is considered a major surgery.

I will have an update posted when Caden gets out of surgery on Monday.

Thank you for your prayers and support.

Caden passed the official seven month mark on June 2nd. On that day he decided to grace us with a new talent. Caden rolled over from his back to his tummy. He got stuck on his tummy and started fussing, but he did do it with absolutely no help at all.

We had no nurse tonight, but it has been a quite day for Caden so far.

Riley continues to do a great job at keeping dry and going to the potty without reminders. He has been getting a new Matchbox car for every poop visit to the potty that he makes without having an accident. I bought a package of ten cars and I believe he has collected five of them since the weekend.

Blessing to you!

We finally had a nurse last night for the first time in over a week. This was the same nurse that we have had for one night per week for quite some time now. The nursing agencies we are working with continue to strike out with getting staff for us.

Caden is doing pretty good considering the amount of reflux he has had lately. His number of reflux episodes per day continues to be higher. It has been a solid two months since we saw a 24 hour period without Caden having reflux. He is actually averaging more like six episodes per day now which is up from an average of about four per day just a few weeks ago.

We have been told that Caden will be the first scheduled pediatric surgery on Monday morning at MUSC. We will not get a check-in time until tomorrow, but we expect it to be around 6 or 6:30 AM on Monday. Please keep Caden in your prayers especially on Monday morning. The surgery will NOT be laparoscopic like we originally thought. They will perform the Nissen Fundoplication as an open abdomen procedure. Caden is expected to be in the hospital for approximately two to four days as a result of this surgery.