Caden's Page

I will start with the best news. I am so proud of my Big Boy Riley this weekend. Riley learned to use the potty yesterday. He was successfully making trips to the potty without having to be reminded within less than six hours after we started potty training on Saturday. We used "Toilet Training in Less Than A Day" and I highly recommend it. My only suggestion is that you choose your rewards wisely or your child could end up on a sugar high that you will think is never going to end. A big thanks to Juliette for recommending the book to us and offering some guidance.

You may think we are crazy for trying to potty train this week, but we felt like this long weekend was our best chance at getting it done. The week building up to this was not the easiest. Riley is currently cutting three molars simultaneously. This is why he has been such a handful for Sherry this week. Sherry has not been at 100% due to a sinus cold that she is getting. I worked from home on Friday to stay close to give her a little relief. I was really glad I stayed home Friday after seeing how rough of a day Caden had with his reflux.

Caden set a single day record of 10 reflux episodes on Friday. Otherwise he has been as happy as a pig in the mud. He smiles and makes more of those little baby sounds every day. You can actually hear some of his babbling if you are able to listen to MP3 files with something like a desktop media player or a portable MP3 Player by clicking the link in the previous posting from Friday morning.

Sherry and I are becoming increasingly more frustrated and exhausted as the days go on without nursing coverage at night. We have only had a nurse for two nights this week. We do not have any family in town this weekend and we have no nurses scheduled for the coming week at this point. We are constantly reminded how important it is to monitor Caden very closely at all times. Sherry came to get me up at our normal 3am changing of the guard a few nights ago. She had no sooner got me to sit up in the bed when we heard Caden cough a few times and then gag. I was in the process of getting dressed and got my foot caught in my pants. By the time Sherry reached Caden his face was covered with reflux and he was waiting for someone to suction him so he could get a breath. We had a similar occurrence yesterday while I was monitoring Riley's potty activities and Sherry was cooking.

The good news is that folks seem to be coming out of the woodwork lately offering help during the day. We are encouraged by this and look forward to utilizing some of their offers for help. I have been asked several times lately if you need to be a nurse to care for Caden. No you do not have to be a nurse. Any of our friends who are willing and capable of learning how to suction Caden could potentially help Sherry during the day. You do not have to have a medical background. Neither Sherry or I have a medical background. If we can learn it then so can you. Feel free to call Sherry if you would like to help. Giving her a few hours of your time in the afternoon so she can take a nap would do wonders. Riley is usually napping between about 1:30 and 4:00 so you would not even need to worry about watching him. Sherry would be a few footsteps away if you got into an uncomforatble situation. Please contact us if you are interested in helping. You can call us at 843-824-9424 or email us at osbornefamily@hoei.com.

Thanks a bunch for your continued prayer and support.

Caden had a few things to say this morning concerning all the fuss about him and his care. He wanted you to hear it directly from him. You can listen to Caden's first PodCast by clicking the MP3 link below.

Caden's PodCast

Enjoy.

We do not have all of the details, but the new nurse did not show up for tonight. We were told by the nursing agency that she was unhappy. She told the agency that it was hard for her to stay awake due to the low lighting in Caden's room. She did not indicate clearly to the agency if she planned to show up again. She did not return calls from the agency or from us on Wednesday. We were trying to contact her to see what we could do to make the environment better for her. (i.e., TV, Internet Access, better lighting, more coffee, etc.)

I did not get in bed until about 10:30PM and Sherry got me up a couple of hours ago at 3AM. Caden had a reflux with Sherry just after midnight and then had one with me at about 4:45AM. We will be so glad when he gets the Nissen on June 6th. This surgery will not fix his swallowing problem, but we believe it will mitigate some of the urgent situations that arise from large amounts of fluid collecting in front of his airway in a short amount of time due to the severe reflux. Fluid that collects due to oral secretions builds up much slower and Caden tends to get restless and starts coughing as a signal that he needs suctioning due to his secretions. We hope that we can get back to the point where we can cat nap while he sleeps the we were doing a couple of months ago when he only refluxed a couple times every two days. Caden has refluxed an average of about 4 times per day for over six weeks now. He has reflux 8 times in the past 24 hours.

I found out a couple of days ago that we are likely in for round two with our battle to get the Medicaid Waiver funding. More details to follow on this subject. I did not share this information with Sherry until last night mainly because she has had a rough couple of days with Riley in addition to Caden's higher than average reflux lately. I try to shield her from the logistics of nursing issues so that she can focus on Caden and Riley. This builds on me form time to time but carrying a little stress from dealing with nursing agencies, insurance, and Medicaid is the least I can do.

Sherry and I had a discussion before I went to bed about whether we are doing the right thing with getting the Nissen. I have come to the conclusion that we have a pretty short list of choices. We can not continue to function like we heave been doing over the past six weeks.

I have come to a much clearer understanding as to why some humans just spontaneously become homeless. Don't get me wrong, I am not going anywhere, but I do fantasize about running off to Alaska, Africa, or South America for a season. Oh how wonderful it would be to fly the bush for some mom and pop air charter service in Alaska or fly supply planes for a missions team in some third-world country. I would have nothing to worry about but weather and the airworthiness of my airplane and maybe getting shot... I digress.

Caden just coughed and snorted a few times bringing me back into reality. That was his signal for me to clear the building secretions. Man I wish you could see the smile on his face right now. He coughed and gasped for air looking at me with the sadness look imaginable as I approached him with the suction hose. He struggled and screamed as if I was slowly removing one of his toenails while I ran the hose into his nose. Once I was done clearing his airway he looked up with the biggest smile. Sometimes he looks at me as if I am his hero. I guess in a small way for a split second I am. I can not even describe the feeling I get when he looks at me like that.

I know I am unloading on you all today. Sometimes it seems to help to just let it out. I think I need a lunch with one of my good friends David, Kane, or Les. They are all good listeners and full of encouraging ideas. I am over due for a lunch with all of these guys. Or maybe I will make a call to Robin where I do nothing more than scream when she answers the phone. Everyone needs a friend like her. I have been known to do that. I know it sounds crazy, but she offered and it relieves stress.

Please keep us in your prayers. We need relief from the stress and exhaustion. We are grateful for all that you do. Our family and our friends have been great sources of comfort, encouragement, and strength. Keep up the good work.

HO

It is confirmed that Caden will have his surgery on Monday June 6th. He will only be getting the Nissen Fundoplication to treat the excessive reflux that he has been experiencing since the end of March. Sherry took Caden to see a hand surgeon on Monday to see if Caden's finger could be repaired while under anesthesia on June 6th. The hand surgeon told Sherry that Caden's hand should not be operated on until it has completed most of its growth which is at approximately 8 years of age. If it is done now it could stunt the growth of that finger.

I talked to CHoP (Children's Hospital of Philadelphia) this week. We are not on the schedule yet, but it looks like we will get Caden seen sometime after the middle of September. I asked for their experience on hand surgeries with other DiGeorge kids and CHoP agrees that the child should be at least about seven years of age in most cases. CHoP has a 22Q genetics clinic that specializes in DiGeorge and VCFS. We have been told by Caden's local GI and ENT doctors that Caden is the most complex DiGeorge case they have seen in their specialty areas at MUSC given his swallowing problems in combination with his excessive reflux.

That is about it for now. I have received several email responses to my last posting about the new nurse. She was not able to work Sunday night due to illness. Sherry and I covered Sunday night. The new nurse worked her first night last night and seemed to like working with Caden. We are pleased with her and we hope she reports the same feelings about us to her company. We are looking forward to having a regular nurse again.

There's no new news on the Medicaid Waiver situation. They have not completed the level of care assessment, but we did not expect that to be completed until later this week anyway. I will keep you posted on that too.


Thanks for your thoughts and prayers. God hears and answers.

Don't forget to check out the video that was created by Eric Ramsey shown in the previous posting. There are also some new pictures today.

Here is a link to a cool video that someone made at the Family Life
Picnic a couple of weekends ago. Riley and Caden are shown in the
video.

It's a big file (30MB) so you will not want to try to view it unless you have
Cable/DSL or some other type of fast access to the Internet.

Video from The Ramsey Clan

Thanks to the Ramsey Clan. I love it.

It's a miracle. She is an answer to our prayers. Okay it's not what you think, she is a mother and her name is Teresa. She is a nurse. She has been off for a few weeks due to the loss of a previous client. Now she is back on the nursing scene and looking for a case like Caden's. Sherry told her, "God sent you to us. I have been praying for you to show up." The nurse said that she had been praying that she would find us too.

She will start Sunday night. She is fairly new to the area and almost exclusively works pediatric cases. She asked us, "What are the days and times that you need a nurse?" I reluctantly answered, "Sunday thru Thursday from 11PM to 7AM." I was afraid the working hours might be a show stopper. She said that those were actually the only times that she is available. I almost fell out of the chair. Then we find out that she lives in the north area and Caden's case would be an easy commute for her. She is also willing to work a case funded by Medicaid. This is sometimes an obstacle because Medicaid cases pay nurses less than cases funded by cash or insurance.

What are the chances of a coincidence like this? I tell you, slim to none. The nursing shortage in this area is bad enough for hospitals that pay more. Not to mention a home case that pays even less and does not offer the stability of a hospital or nursing home job. This is a real life answer to our prayers and yours. Now, do you want to really be blown away today like I was? I opened my Bible for the first time to the two following the verses that you have seen everyday for over six months at the top of this page.

Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. Jeremiah 29:12,13 (NIV)

WOW! Did you just get a warm feeling run through your body like I did after reading those two verses? I had not noticed these two verses until after meeting the new nurse today. I think this was God's way of saying to me that he did do this as an answer to our prayers.


In other news, We made contact with the surgeon this week. Caden will likely have the Nissen Fundoplication surgery on Monday June 6th. This is a little sooner than we expected. I am traveling the week of June 13 and the surgeon will be on vacation until the week of July 4th following my trip. That means we need to get this done right away or it will be six weeks before we get another chance. Caden will see a hand surgeon on Monday to determine if his finger can be repaired on the same day while he is still under anesthesia. The surgeons agree that we should minimize the number of times Caden goes under anesthesia since he has been so sensitive to it in the past.


Other praise reports are:

Caden has a new cousin. Congratulations are in order for Sherry's brother and his wife. They were blessed with a beautiful little girl this week. Mom and baby are reported as doing great.

We ran into the parents of Caden's little heart surgery neighbor from back in November in the PCICU. They were back in town from Greenville for a scheduled open-heart surgery number two of three. Their little girl had her surgery last Friday and was doing great on Monday morning and was expected to be move out of the PCICU that day.

Thank you so much again for your prayers. Praise God! We are being heard.

To God be the Glory!

It has been a busy week for Caden, and us. We received some BIG news on the nursing situation. Caden has seen a doctor every day this week for scheduled appointments. He had a test run, saw the ENT (Ear, Nose, and Throat) doctor, and had his six month well visit at the pediatrician.

He got a test run on Monday to check the motility of his esophagus. They inserted a tube through his nose until it got just past the top sphincter of his esophagus. They injected barium while watching it on the xray machine. This test was done to ensure the operation of the esophagus from the restricted area down to the stomach. This is a part of Caden's digestive system that has not really been used yet since he gets fed through a G-tube and does not swallow. They wanted to ensure the operation of this area of his anatomy before moving forward with the reflux surgery treatment called a Nissen Fundoplication (Wrap). This is a surgical procedure used to treat excessive acid reflux problems in adults and children. The surgeon would take part of the upper stomach and "wrap" it around the lower esophagus to tighten it and help keep the excess reflux from leaving the stomach and entering the esophagus.

Tuesday Caden saw the ENT for a normal follow up appointment. They still want to discuss botox injections in the muscles of the upper sphincter of the esophogus, but do not want to try this until after the reflux problem has been corrected (Nissen).

Wednesday Caden saw his pediatrician. The main things that were discussed had to do with trying to get the Nissen procedure scheduled. This will be an inpatient surgery. We are trying to coordinate the surgery with a hand surgeon so that Caden's little finger on his left hand can be repaired during this time under anesthesia. If you have not noticed this finger, it has a contracture (joint frozen at 90%). It is obvious in some pictures. We want to get this fixed before he starts crawling.

On the nursing front, we have been notified that Caden was awarded a Medicaid Waiver slot. Yeah!!! I receive a call from the governor's office as well as from Caden's Early Interventionist this week with the news. In regards to staffing concerns, Sherry is meeting two new nurses later this week that are being interviewed by the nursing agencies in response to recent newspaper ads. As far as getting the waiver slot, that basically means that we have to go through some more paperwork to get Caden evaluated for level of care. The Medicaid folks will determine exactly how much of and what type of nursing care Caden needs before final approval of the funding. We saw a similar process with the insurance company and they also do follow up evaluations to make sure care is still justified. We expect to have final approval by the end of next week. The timing is perfect since the insurance coverage will on pay for five or six more visits by the nurses. We have only had a nurse one day this week. Obviously we did not have a nurse tonight since I am writing this at 3:20 AM.

We believe that prayers are being answered here. We continue to receive emails and phone calls from people who are praying for Caden and our family on a daily basis. God works in mysterious ways. Some people may disagree with me, but I believe God uses current day medicine to deliver miracles. The knowledge and skills to perform open-heart surgery on an organ the size of a walnut is almost unimaginable. Being able to perform things like the Nissen procedure is remarkable. I also believe that God puts certain people in your lives at the right times for you to be able to get through tough times easier. I don't know the governor, but I know someone who does. Sherry could not get through her days without friends like those ladies who took her out to dinner Monday night. Thanks a bunch Sally for organizing that outing. We have an awesome support system though our family and church. The past six to seven months has taught me so much and grown relationships with family and friends to new levels that might have never been reached otherwise. I have been fortunate enough to work for people who are understanding and compassionate about our family's circumstances. I thank you and I thank God for you.

Blessing to you all,
Hank Osborne

Saturday was a great day. We went to the park for a party called Familypalooza sponsored by the Family Life service at Seacoast Church. We then went to Boone Hall Plantation to pick fresh strawberries. Caden seemed to really enjoy being out in the fresh air. He went the entire afternoon without any reflux and that is a BIG deal. Sherry and I finished of this awesome day with a dinner and a movie while Grandma and Grandpa took care of Riley and Caden.

Sherry made and interesting observation Saturday of our life over the past year. It was a little more than a year ago that we decided to host a Preparation for Parenting class in our home. Sherry finds it interesting how we entered into this class thinking we would be able to help others, when in fact we have been helped by more people through that class than we could have ever imagined. That class, the others we have facilitated, and the entire parenting ministry at Seacoast has given us much more than an opportunity to share God's word and minister to others. It has delivered us a group of God's people with hearts of gold. We have gained some very good friends and grown in our own relationships with God and each other along the way. Oh yeah, we have learned some really great things about parenting from the Growing Families International programs. It is really cool to go into something like this with expectations of learning a little more about raising children to find that there is so much more to gain. Some of our greatest supporters in the past year have been classmates, other class leaders, and attendees of the classes we have facilitated.

Don't forget to check out the latest pictures. I added two new sections of pictures today.

Blessing,
Hank O

I am still on travel in Alabama, but I did receive some great news. I received a call from a division of the governor's office. The call was concerning the Medicaid waiver waiting list. The lady calling today has been assisting us by communicating with a division of the Department of Health and Human Services. They have been working to reevaluate Caden's case to see if he qualified for advancement on the Medicaid waiver waiting list. The news today was that Caden was moved from number 76 up to number 15 on the waiting list. This means that Caden's nursing care could be funded by Medicaid in as little as one to two weeks from now. This is perfect timing since there are only six more visits covered by my insurance plan. This does not solve our staffing problems, but it lifts a huge burden of worry about where the funds are going to come from after the private insurance coverage is exhausted.

Sherry took Caden to the cardiologist this week. They performed several tests and found that Caden's heart is working okay. There are couple of items that we have to get clarification on after this visit. I will provide more details later, since the cardiologist could not provide immediate answers to all of Sherry's questions without looking at Caden's test results more carefully. For now, it is important to know that Caden's heart is doing as good as the last visit. There are no immediate concerns about the condition of his heart.

Please keep us in your prayers. We are using a new nursing agency for the first time this week. We hope that this new agency is better able to deal with the staffing problems that we have been experiencing with the agency we have been using up until now. For a while we will use both agencies to fill our need for nursing care. We know that many of you reading Caden's Page are helping us look for nurses who can work Caden's case. Please continue to do so. Nurses with at least and LPN certification can be brought on part time with one of the agencies to specifically work Caden's case. We have been using nursing care from 11pm to 7am. Please contact us if you find anyone interested.

Hank O

It was a Happy Mother's Day at the Osborne house. We had Grandma, Grandpa, Nana, Aunt Becke, and cousin Kurt here to celebrate Mother's Day. We held a private dedication ceremony at Seacoast Church on Saturday for Caden. The ceremony was performed by Scott Kinney and the worship music was lead by Tony Cadiz.

Caden had a great weekend after having one of his worst days of reflux ever on Friday. That was an particularly rough day on Sherry and me since we had pulled night shifts every night except Tuesday night of this past week due a shortage of nurses. We were so relieved to see Aunt Becke and Nana arrive on Friday night to relieve us for a couple of nights. I am pulling a night shift tonight since we are once again without a nurse. I will depart in a few hours for Alabama for a week of work. Sherry will relieve me shortly so that I can catch a cat nap before my 7:15 flight this morning. We do have nurses for the remainder of this week while I am gone. Sherry's mom is staying to help Sherry through the days and evenings while I am gone.

Please continue to pray for the nursing situation. We have hired a second agency to begin supplying nurses, but they have not come through with a nurse yet. We are also still working on getting funding for the nurses through the Medicaid Waiver. We do not have any new news on that front other than to say we have contacted the governor's office. They have responded, but we have not received word on what exactly might be done to help the Medicaid Waiver waiting list situation. The waiting list is so long that we could potentially get to a point where we don't even need nursing care by the time we reach the top of the waiting list.

Please pray for the doctors to find answers on how to treat Caden's swallowing and reflux problems. Caden has several appointments for tests this week with cardiology, x-ray, and ENT (Ear, Nose, & Throat). He is suppose to get some type of new swallow study done later this week.

Thank you for checking on us. There are new pictures from this past weekend. I hope you enjoy.

God Bless You!!!
Hank O

Caden and Caden's Page are six months old today. Caden is now up to 12 pounds 8 ounces and he is a little over 25 inches long. Caden is getting much better with his head control and is showing signs that he may roll over any day now. He plays with anything that he can reach and loves to inspect his hands when the there is nothing else close by. He shows signs of being very sensitive to loud noises, our facial expressions, and our tone of voice. He recently became very upset when I grimaced and said ouch while he was pulling my hair. He frowned, puckered and poked out his bottom lip. Then his bottom lip quivered a bit just before he let out a cry.

Caden is the most loving and cuddly child I have ever held. He has a beautiful smile and is a very happy baby.

I thank God every day for the blessings I have received from Caden so far. I am honored that God would choose me to take care of such a special little boy. Caden has taught me more than anyone could in six months and he has not yet spoke a word.

I am very grateful to all of you who have followed Caden's story, prayed, cared, and helped in other ways. I would like to say thanks to you all by using Paul's words found in Philippians 4:10-14 (NLT)

"How grateful I am, and how I praise the Lord that you are concerned about me again. I know you have always been concerned for me, but for a while you didn't have the chance to help me. Not that I was ever in need, for I have learned how to get along happily whether I have much or little. I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do everything with the help of Christ who gives me the strength I need. But even so, you have done well to share with me in my present difficulty."

May God bless you,
Hank O

PS: Please read below for yesterday's update on the nursing situation.

First of all, Caden is doing pretty good. He is still refluxing everyday with no predictability as to when it will happen. Sherry has got pretty good at figuring out Caden's expressions and she is able to remove his food from his stomach using a syringe on his g-tube to prevent reflux. This works pretty good, but you have to be right there when he is about to reflux in order to prevent it. He still goes through the motions of reluxing, but nothing comes up. This at least minimizes the amount of yucky stuff that has to come out his nose.

We finally broke down and asked for some counseling assistance from the church. Sherry and I have averaged about once a week lately where we go through an almost total emotional meltdown. We learned that this is somewhat normal given our situation. We have talked to other parents who have been through very similar situations and they have described the exact same feelings that Sherry and I struggle with daily. Pastor Jerry McSwain and Jim Miles came out to our house this week to listen to us, encourage us, pray with us, and share the word of God with us. It really helped.

On the nursing front there is good news and bad news. We have been told that Caden was approved for the Medicaid waiver. The bad news is that it could be up to six months before Medicaid actually begins funding Caden's nursing care. The problem is basic funding issues. There is more demand than there are funds to support. The following paragraph is from an independent study called "REVIEW OF THE MEDICAID 1915(c) HOME AND COMMUNITY BASED SERVICES WAIVER PROGRAM LITERATURE AND PROGRAM DATA". This report was funded by the Department of Health and Human Services and conducted by The Lewin Group in July of 2000.

"States also limit the number of program participants in different ways. Typically, states choose to limit program eligibility by degree of impairment or financial need. Many states also keep waiting lists because the demand for Waiver services is greater than the capacity of the Waiver programs. Some states provide services to individuals on the waiting list on a first-come, first-served basis, but many states prioritize the lists according to level of need for services."

This paragraph sums up the dilemma we currently fall into. It is my understanding that South Carolina uses the first-come first-serve option for cost control. I have also learned that there are allowances in SC to prioritize cases based on circumstances. The only information I can gather on how to get your case reviewed is to knock on a few doors in Columbia. (i.e., Governor, Congressmen, Senators)

The remainder of the bad news concerning nursing care funding came from our insurance company this week. They can not grant an extension of services even if doing so could avoid another hospitalization. They are under strict guidelines when operating as a true HMO. If my employer backed the insurance plan with their own funds and only used the insurance company to manage the coverage then the decision to extend benefits would revert back to the employer. My previous employers like Honeywell and Northrop Grumman did fund some of their insurance plans. Both of these companies have well over 100,000 employees each. My current employer probably has less than 100 employees covered by our insurance plan.

I want to mention a couple of behind the scenes Nashville stars who have encouraged me this week. Dottie Moore is a songwriter and former chief of staff for her Congressman. Dottie emailed me this week and encouraged me to contact government officials. She witnessed the value of this action first hand during her time in Washington. The second influence on my week came from a performance at our church this weekend by and award winning studio guitarist Brent Rowan. Brent is a lifelong friend of our pastor at Seacoast Church Greg Surratt. Brent's music was to say the least awesome! I immediately replaced Riley's nighttime music with Brent's latest CD "Bare Essentials". The music was only part of the inspiration. I opened the cover of the other CD I bought "Up & at 'em" and found a great quote.

"Sometimes in life after you've tried as hard as you know how to make situations work, and they don't, you simply have to pull up stakes and travel on to preserve your sanity as well as the sanity of those around you."

I told Brent that this quote that is found as a description to the first song "Travel On" on the "Up & at 'em" album meant more to me than he could imagine.

Please keep us in your prayers this week. We only have a nurse for one night this week(Tuesday). Sherry and I will be splitting the night shift for the rest of the week. Please wish me well as I try to make appointments with the Governor, Congressmen, and Representatives.

Don't forget to check out the latest pictures.

Gob bless you!

Hank O