Caden was admitted to the MUSC Children’s Hospital on Wednesday. He has tested positive for RSV. We had already been to MUSC earlier in the morning due to a bleeding ear (we found that to be normal after getting tubes). We were back home and I was about to go in to work when Caden began breathing irregular and his hands and feet turned blue. The paramedics were called and they transported Caden and I directly to the MUSC Emergency Room.
Yes, Caden and I took an ambulance ride to the hospital. It is not the first time though. We did it once from the pediatrician’s office almost a year ago. I believe that Caden’s symptoms were worse today than they were that day when the pediatrician called the ambulance.
On the way to the hospital Caden spiked a temp of 104. It took about an hour to get it back down to 101. Once in the ER we waited for over ten (10) hours to get him into a room due to bed shortages. They shuffled kids around because they wanted Caden in his own room to minimize the exposure of RSV to other kids since it is highly contagious. The ER doctors said they would expect Caden to stay a few days in the hospital. They believe he hit to peek of the RSV cycle this afternoon. They said that our willingness and ability to suction Caden kept this from getting any worse than it was because RSV causes a ton of secretions. Caden’s swallowing issues raises the risk of aspiration greatly with increased secretions. Sherry and I were up several times last night with Caden due to his need for suctioning.
At this point Caden is stable. He is now on an IV and getting oxygen as needed to help him keep from breathing so hard. He is in his own room and Sherry is staying with him tonight. My Mom and sister arrived tonight to assist with Riley’s care while Sherry and I play leapfrog between here and MUSC.
I am going to tease you a little with a great story that I have to share later. Caden had been awake for over 12 hours and would not go to sleep today. I wish someone could have witnessed what it took to get him to go to sleep. For now I will just say that a little pray and a touch of the Holy Spirit goes a long way.
God Bless you all for praying with us and for us. Please continue to pray for comfort and healing for Caden. Please pray for traveling mercies for Sherry and I as we make this 50 mile round trip to MUSC a couple of times per day. Also please remember to pray for Caden’s grandma (Sherry’s Mom). She is going into the hospital later today for a procedure.
God Bless!!!
Please keep Caden in your prayers. We will keep you posted on his progress.
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 (NIV)
Caden was admitted to the MUSC Children’s Hospital on Wednesday. He has tested positive for RSV. We had already been to MUSC earlier in the morning due to a bleeding ear (we found that to be normal after getting tubes). We were back home and I was about to go in to work when Caden began breathing irregular and his hands and feet turned blue. The paramedics were called and they transported Caden and I directly to the MUSC Emergency Room.
Yes, Caden and I took an ambulance ride to the hospital. It is not the first time though. We did it once from the pediatrician’s office almost a year ago. I believe that Caden’s symptoms were worse today than they were that day when the pediatrician called the ambulance.
On the way to the hospital Caden spiked a temp of 104. It took about an hour to get it back down to 101. Once in the ER we waited for over ten (10) hours to get him into a room due to bed shortages. They shuffled kids around because they wanted Caden in his own room to minimize the exposure of RSV to other kids since it is highly contagious. The ER doctors said they would expect Caden to stay a few days in the hospital. They believe he hit to peek of the RSV cycle this afternoon. They said that our willingness and ability to suction Caden kept this from getting any worse than it was because RSV causes a ton of secretions. Caden’s swallowing issues raises the risk of aspiration greatly with increased secretions. Sherry and I were up several times last night with Caden due to his need for suctioning.
At this point Caden is stable. He is now on an IV and getting oxygen as needed to help him keep from breathing so hard. He is in his own room and Sherry is staying with him tonight. My Mom and sister arrived tonight to assist with Riley’s care while Sherry and I play leapfrog between here and MUSC.
I am going to tease you a little with a great story that I have to share later. Caden had been awake for over 12 hours and would not go to sleep today. I wish someone could have witnessed what it took to get him to go to sleep. For now I will just say that a little pray and a touch of the Holy Spirit goes a long way.
God Bless you all for praying with us and for us. Please continue to pray for comfort and healing for Caden. Please pray for traveling mercies for Sherry and I as we make this 50 mile round trip to MUSC a couple of times per day. Also please remember to pray for Caden’s grandma (Sherry’s Mom). She is going into the hospital later today for a procedure.
God Bless!!!
Please keep Caden in your prayers. We will keep you posted on his progress.
Caden is doing great this evening after recovering well from today’s outpatient visit. Caden did get ear tubes inserted in both ears today, but he did not get a botox injection. However, there were some major developments on the subject of swallowing. I get to that in a minute. The new ENT (Ear, Nose, and Throat) doctor said that there was a lot of fluid and that we should expect to see a noticeable difference in Caden’s hearing this week which should lead to more rapid speech development. Caden sat at the table with us during dinner this evening as usual. The picture on the left was taken this evening and you can see that he is as happy as a pig in the mud.
Now for the new developments. I am going to do my best to just state the facts that were found today. There are a lot of emotions flying and we don’t want to get ahead of ourselves. There were probably as many questions generated today as there were questions answered. It looks like giving this new ENT a try might be a pretty big step in the right direction for getting answers to “Why is Caden not swallowing?” The focus on Caden’s swallowing problems thus far have been centered on the cricopharyngeus muscle also known as the upper sphincter of the esophagus. This muscle was hyper contracted prior to Caden’s first botox treatment back in August. There was some improvement in Caden’s ability to swallow his secretions after that first treatment, but the improvement was nowhere near what we all expected or hoped for in terms of eating. The puzzling question for us and the previous ENT was the last time Caden got botox back in November was that the doctor said that the muscle looked like the cricopharyngeus was already open enough to pass food. She did go ahead and injected 40 units of botox that day anyway. We saw very little swallowing improvement after that botox treatment.
The new ENT doctor took a different approach from the start. He wanted to take a good look around before doing anything. He went in today and scoped Caden’s airway, vocal cords, and esophagus. His findings seemed to surprise him as much as it did us.
I am including a picture to help illustrate today’s findings. The picture on the right was taken during the scope of Caden’s esophagus today. I added the dotted lines to illustrate what the doctor believes to be a major vein or artery protuding in on the back of Caden’s esophagus. The other areas of the esophagus shown in this picture are considered to be normal. He believes this lump protruding in on the esophagus to be a caused by a blood carrying vessel because it is about the size of an adult’s pinkie finger it was pulsating at the same rate of Caden’s heart beat. This lump was found approximately one inch below the cricopharyngeus muscle where all the botox has been previously injected. The ENT did not inject any botox today because of the cricopharyngeus was fairly relaxed already and he did not feel that the risk associated with botox was justified given the new findings. He believes that the new found protuder might be a large contributing factor to the swallowing problems.
The doctor would not speculate very much on what corrective action might be available for such a situation. The first thing the ENT doctor is going to do is talk to Caden’s heart surgeon to see what data might have already been collected regarding Caden’s anatomy in that area of his chest. The ENT doctor wants to see if any of the tests have already been done that he might suggest as a next step in determining a course of action for Caden. So for now we will wait for a few days to give these doctors a chance to talk. The new ENT also wants to view all of Caden’s previous barium swallows to see if anything in those might help him understand the impact that this artery/vein is having on Caden’s swallowing functionality.
You can help by simply praying for Caden and the rest of our family. Sherry and I both were pretty upset over today’s news. We don’t know what will develop, but it is hard to keep from imagining the next step in dealing with such a circumstance as was described to us today.
Caden’s grandma did not have surgery today. We got our days and dates mixed up. She will be going in for her procedure on Thursday. Please keep her in your prayers as well. Thanks a bunch for checking up on Caden. God Bless!!!
Caden has been doing pretty good. He will be going in for some outpatient work on Monday 1/23/06 at about 7AM. He will receive another botox treatment in his esophagus. This time a new doctor will be performing the treatment. It is our hope that we will see a better result with this doctor. Caden will also get ear tubes in both ears.
Caden has still not taken a single meal by mouth since birth. Many people are surprised to learn that Caden is still on a feeding tube. It is our prayer that this botox treatment will correct this problem.
Caden’s Grandma is also going into the hospital for some work tomorrow. Her procedure is a bit more involved and will require a hospital stay. Please keep Caden and his Grandma in your prayers tomorrow. Please pray for protection over both of them and rapid recoveries.
God continues to be really good to us. We are thankful for each one of you that takes time to pray for our family.
Caden is doing good. He had a few appointments today at MUSC. The big one was with his new ENT (Ear, Nose, and Throat) doctor. Caden was evaluated for tubes and another botox treatment. We went ahead and scheduled those things to be done on January 23rd. Caden has had limited response to previous botox treatments. We hope that a different person applying the treatment will make a difference in how well Caden’s swallowing responds. Caden will also get tubes in both ears on the same day.
Caden is communicating more every day using sign language. He is now signing bye-bye, all done, and please (sometimes). We are working on night-night and thank you as well. He is much more playful these days and loves to watch his brother Riley do anything.
I have posted a bunch of pictures taken during December including some from Christmas morning. Thanks for checking in with us.
We ran into Emory and his mommy at MUSC today. It looks like they are getting closer to finding some answers about Emory’s primary diagnosis. Please keep them in your prayers. It has been an exhausting ride for them lately. You may not be able to understand fully what it is like to deal with a child that has special medical circumstances, but trust me when I say their family could really use your prayers to lift them up.
I highly recommend that you check out my lasts post on The Land of Ozz promoting the new movie End of the Spear™. A hat tip goes to my friend AnneMarie for reminding me of the release of this movie.
It has been a long ten days for Caden since I last posted an update, but things are looking great heading into 2006 this weekend. Caden ran a fever of more than 103 on several occasions over the Christmas weekend. We talked to Caden’s pediatrician no less than three times in four days last weekend. Caden was able to tough it out over the weekend an avoid a trip to the hospital. He is doing great now that he has been on his new antibiotic since Tuesday morning. The diagnosis was a double ear infection. We plan to move forward with getting tubes put in Caden’s ears as soon as we can get it scheduled.
No, the device pictured is not a new CIA interrogation device. The device shown is a therapy tool from Theradapt that Caden uses to practice standing. It was recommended by his physical therapist. This device forces him to put weight on his legs while strapped into it. It has a tray much like that of a highchair that can be used to hold things for him to play with during his time in the stander. Caden continues to stand up with assistance and is almost pulling himself up to a sitting position without assistance now. He has started waving bye-bye to me when I leave for work in the mornings.
Don’t forget to check out the parenting classes that are starting over the next couple of weeks. Space is limited and registration is required to guarantee your spot in a class. You can find more information on the GFI Charleston web site or you can simply send us an email and we will gladly answer any questions that we can or pass you questions on if needed. Our email address is listed on the contact us page.
You may also want to check out my readings of The Living Bible. The free mp3 files are available for download from iTunes or you can access them at The Land of Ozz. This week was a big one for all of my blogs on hoei.com. The hoei.com web site topped 10,000 unique visitors in a single month for the first time ever earlier this week. That is well over ten times the amount of traffic from a year ago. I expect the number to end up near 12,000 for the entire month of December. I plan to use the popularity of these web sites to share links to resources that Sherry, I and other members of our Bible study find to be useful for seeking a closer relationship with God. Below is a list of books related to Christmas that Sherry recommends for Christian families. I do get compensated for referring people to Amazon and other retailers listed on my we sites. All of the proceeds will go to ministries supported by our Bible study group.
It has been an eventful day, but now all is well…for the most part. Caden spiked a fever of almost 104 this evening. It was easily brought down with over-the-counter medicine. He is resting well now. Caden saw his doctor earlier today due to excessive congestion and cough. We called the doctor for advice on the fever tonight and everything is now within the doctor’s comfort zone to keep us out of the hospital. Even with this great news please pray that God will see Caden though this cold quickly so that Caden can enjoy his first Christmas at home.
In other recent news, Caden has seen the eye doctor, a new ENT doctor (Ear, Nose, and Throat), and his
Endocrinologist. The eye doctor was seen as a recommendation of the Greenwood Genetic Center. They recommended a few new tests related to Di George Syndrome that we had not previously been told about when visiting with genetics specialists at MUSC. As a result the eye doctor says Caden needs glasses, but agreed to wait a few weeks to retest Caden’s eyes to give the diagnosed problem a chance to correct itself. I don’t remember the diagnosis, but it CAN correct itself with children Caden’s age. Please pray for this healing. The ENT wants Caden to get tubes put in his ears no later than next month. The endocrinologist ran lab tests on Caden’s blood and urine. These labs verified that Caden’s current diet and medications are still working good to maintain calcium levels and growth. Currently Caden is only taking a calcium supplement, over-the-counter vitamin, and Zyrtec through his g-tube. His feedings consist of a special order formula via the g-tube. The formula is very expensive and has been approved as a medical necessity since Caden is not eating by mouth. That means the formula is now supplied through insurance and Medicaid. The most recent botox treatment has done great for allowing Caden to clear secretions, but foods by mouth are still a work in progress. We are seeing a new specialist the first week in January to address more options to treat the swallowing difficulties.
The picture below was taken last Friday night while out at James Island County Park for the Charleston County Parks and Recreation Department’s annual Festival of Lights. I will be posting more pictures soon.
Other Family News
Riley’s doing great. He enjoys helping take care of Caden and the rest of us for that matter. For instance, while out Christmas shopping with Riley the other day he said, “Daddy, don’t worry. I will take care of you.” It was absolutely adorable the way he said it. Even though Riley does not know specifics, he may sense that I have had some things on my mind recently. That said, I want to ask for you to pray for these issues that are weighing heavy with me. Sherry and I have been praying for a while to get answers to some questions that I can not go into here now. All I ask is that you pray for God to make his will known to us. HE knows our needs so all you need to do is ask.
I will likely get another posing in before Christmas, but in the event you plan to visit family or just decide to turn of the computer for the rest of the week I want to say Merry Christmas. May God bless you and your family during this awesome season of celebration. Christmas is a time to remember the perfect gift that God gave to us, His son Jesus Christ.
Thanks for visiting Caden’s Page.
Other News
There’s a fresh selection of parenting classes being offered in January. Sherry and I will be hosting one out of the four Growing Kids God’s Way classes. Our class will be held on Friday evenings beginning January 13th right here in Goose Creek. Please check out www.gficharleston.org to register or to get more information on other classes being offered on different days in the Charleston area.
Caden’s Page is alive and well. I still have some cleanup work to do, but the main page and some of the other critical pages have been converted to WordPress from Blogger. Please let me know what you think of the new style by leaving a comment. If you see problems, please let me know what browser you are using. (i.e., Firefox 1.0.7, Internet Explorer 6, Opera 8.5.1, etc.)
You can get the technical details concerning the changes to this blog by reading Blogger to WordPress on The Land of Ozz.
Updates for this blog are being posted under the family category of The Land of Ozz until Caden’s page can be ported over to a new blog software. This is being done due to recent unresolved technical difficulties with Blogger.
Caden went to the doctor today with extreme congestion and coughing. They diagnosed him with sinusitous. To my surprise Sherry had spent several nights getting up to suction and comfort Caden. I took a shift last night and we both decided that it was time to get the doctor involved. They gave Caden an antibiotic and breathing treatments. They told us to look for labored breathing as a sign for concern. We have not seen labored breathing, but Caden is breathing a little fast and shallow as he was when the doctor saw him today. He generally looks like he is totally wiped out tired. He looks like I feel. The sleepless nights have started to catch up to Sherry and me.
We ask for you to pray for us now in particular. At this point I will be attending my grandmother’s funeral without Sherry and the boys. Caden is in no condition for a two and half hour car ride to Clinton. Please pray for God to heal this sinus illness that is affecting Caden in particular. Please also continue to pray for healing with the swallowing, developmental issues, and heart issues. The botox for swallowing issues on the 14th had Caden resting great without needing any suctioning through the night until this sinus cold caught up with him. Please pray that he can get back to nights of sound sleep. Please continue to thank God for the blessings that our family has experienced through these tough times. We truly are grateful for the tough times because they have drawn us closer to him. Please pray for traveling graces for me as I go to be with my family for my grandmother’s funeral services.
Thank you for your prayer and support. May God bless you and your family.
The picture on the left was taken this evening and you can see that he is as happy as a pig in the mud.
No, the device pictured is not a new CIA interrogation device. The device shown is a therapy tool from 
