We have received some inquiries on the results of the visit to Cincinnati Children’s Hospital. We did visit Cincinnati Children’s as planned during our recent vacation. We saw two clinics. We didn’t really hear anything new in terms of ideas to get Caden to swallow from the first clinic (ENT). Caden’s local ENT doc had already told us that Caden might benefit from more aggressive feeding therapy. The docs in Cincinnati confirmed this approach. The folks in Cincinnati performed a FEES (Flexible Endoscopic Evaluation of Swallowing) study. This is a test where they stick a very small camera up the patient’s nose and watch the swallow (or attempt in Caden’s case) in progress. Caden did not show any signs of a coordinated swallow and his upper esophageal sphincter did not open. The purpose of the aggressive feeding therapy would be to try to train Caden’s neuro-muscular system to perform a swallow when certain textures, temperatures, or flavors are put into his mouth. The trick is for the therapist to be aggressive enough to push Caden’s limits without causing him to aspirate and get pneumonia. The ENT docs said it may take causing some aspiration to figure out how far Caden can go with therapy. So far no-one has been been comfortable with pushing Caden that far.
The second clinic was called the feeding team. We saw nearly a half dozen different folks in this clinic including speech therapist, Occupational therapist, nutrition specialist, and a doctor. They had already reviewed Caden’s file from MUSC and they reviewed the results from the ENT clinic earlier in the day. The feeding team recommended some adjustments to Caden’s diet since everyone including this team believed that Caden would be getting all of his nutrition and hydration by way of G-tube for an unforeseen amount of time. The doctors actually said they could not give any assurance that Caden would ever be able to swallow enough to maintain his basic nutritional needs.  The feeding team recommendations on diet change leaned towards a more natural diet as opposed to the concentrated (corn syrup based) formula he has been on for several years. To be able to feed Caden pureed foods his feeding tube would need to be a larger diameter. The nurse asked if we wanted to upgrade that day and we agreed. They also were concerned that Caden would begin to gain too much weight on the number of calories he has recently been getting (approximately 1500 per day). They want to bring him down closer to 1200 per day. These changes will be manged by their team and will require an other visit once per year to track his growth.
I had changed Caden’s feeding tube port a few days earlier while we were at family camp in Indiana per Caden’s request. Once he has had a g-tube port in for several months it tends to get corroded and starts to irritate him. This happened and we had a spare in the van, but the spare had obviously been exposed to too much heat in the car and leaked even thought it was new out of the box. So I welcomed a new port even if to do nothing other than to stop the leak. The new g-tube port that is capable of passing thicker foods was obviously larger. Therefore the new port had to go through a hole that had been accommodating a smaller port for years. I asked the nurse if I could insert the new port. I wanted to know how difficult it was to insert since Sherry or I would likely be the ones changing it out the next time. You may remember that I ended up having to insert Caden’s g-tube port in the MUSC ER once because the doctor couldn’t get it inserted. I didn’t want Caden to have to go to surgery to get the hole enlarged back then or this past week so I was willing to inflict a little bit of short term pain if necessary. The new port did not go in on the first couple of tries, but I waited until Caden relaxed between breaths and was able to get it put into place.
Now we are waiting to see if our medical supply folks can order the new natural (pureed table foods) mixture. We are told it is very expensive so we are also hoping that my insurance and/or medicaid will pay for it. At some point Sherry wants to try making her own food for Caden, but that will take some closer coordination (more frequent follow-up visits) with the nutritionist in Cincinnati. We have not had much success with the MUSC nutritionist. The folks in Cincinnati asked who does patient coordination for Caden and they were surprised to hear us say that we did coordination of care and managed his nutrition. We explained an example of why and they said, “ah yes, we read that in his file.” But they were surprised due to the complexity of issues we manage. Most 22Q11.2 kids only exhibit about five out of the 186 presentations associated with VCFS or 22Q11.2. Caden has exhibited three dozen presentations so far with more than a dozen being very serious (i.e. heart defects, swallowing/speech, digestive, or orthopedic/scoliosis related).If you have never seen it you can download a PDF copy of the VCFS fact sheet highlighting the presentations that Caden has exhibited.
Fun in Cincinnati
We visited the Creation Museum and loved it as much as the last time. Caden, Riley and I attended a “Creation Adventure” kids workshop on “Pterodactyls: Flying Dragons” presented by Buddy Davis. The next day we visited the Cincinnati Zoo. Once we got to the hospital on Thursday we explained that we had a desire to spend the remainder of our day at the Cincinnati Children’s Museum. Then we learned that the hospital patient service department has passes for things like the zoo, museums, and other attractions for the entire family of a patient. That is a huge deal financially because it can cost nearly $100 to visit the Zoo or museum without a military discount. We wish we had known this earlier int he week because we could have saved some cash at the zoo, but none the less we were grateful for the pass to the museum. It was a great way to complete our week in Cincinnati. We packed up the next morning and drove to Asheville, NC. On Saturday morning we met Nana and went to pick apples in Hendersonville, but got rained out. We did go ahead and buy a peck each of four different varieties so that Sherry could do some canning. 🙂
Orthopedics PreOp
Caden had his pre-op visit for his scoliosis surgery this week. The nurse told Sherry that this was a serious surgery and began explaining ICU procedures and expectations for how long Caden would be in the hospital. Sherry began to get concerned and asked how this compared to open heart surgery. Then the nurse realized that we had seen our share of ICU and assured Sherry that this was no more serious than open-heart surgery, but this was as big of an orthopedic surgery as you can experience. The nurse later explained that most parents have no concept of their kids being in ICU and being on life support. Caden will go into surgery on the 28th of September. The surgery will last approximately four hours. He will get a sedated echo cardiogram while under sedation.  He will be under the care of the cardiac anesthesia team as a matter of precaution. Caden will then recover in the MUSC PCICU (pediatric cardiology intensive care unit). He will stay there until extabated and stable. He will be on telemetry to watch for heart blocks to ensure that he continues to have no need for a pacemaker.
I will be updating my Twitter page and this blog as things progress during the surgery and recovery time. I plan to post a specific prayer request a few days before the surgery. For now we simply ask that you pray for Caden to have protection from illnesses, infections, and fevers. He ran a full fever (102 range) a couple of nights this week and has shown some oxygen SATs in the lower 90’s. He did get a chest xray on Tuesday and we are thankful that there was no signs of pneumonia. Caden’s pediatrician has some ideas on what may be causing the pop up fevers and low SATs, but I will save that for another post. We thank you for your prayers and support of our family.
PS: The photo is of Caden (being held off the ground by me) getting ready for his first ever zip-line ride at GFI Family camp. He loved it and I was proud of the courage he displayed…after a little peer pressure form Riley who did it two years in a row. More pictures to come..soon.
"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)
September 15th, 2010
We have received some inquiries on the results of the visit to Cincinnati Children’s Hospital. We did visit Cincinnati Children’s as planned during our recent vacation. We saw two clinics. We didn’t really hear anything new in terms of ideas to get Caden to swallow from the first clinic (ENT). Caden’s local ENT doc had already told us that Caden might benefit from more aggressive feeding therapy. The docs in Cincinnati confirmed this approach. The folks in Cincinnati performed a FEES (Flexible Endoscopic Evaluation of Swallowing) study. This is a test where they stick a very small camera up the patient’s nose and watch the swallow (or attempt in Caden’s case) in progress. Caden did not show any signs of a coordinated swallow and his upper esophageal sphincter did not open. The purpose of the aggressive feeding therapy would be to try to train Caden’s neuro-muscular system to perform a swallow when certain textures, temperatures, or flavors are put into his mouth. The trick is for the therapist to be aggressive enough to push Caden’s limits without causing him to aspirate and get pneumonia. The ENT docs said it may take causing some aspiration to figure out how far Caden can go with therapy. So far no-one has been been comfortable with pushing Caden that far.
The second clinic was called the feeding team. We saw nearly a half dozen different folks in this clinic including speech therapist, Occupational therapist, nutrition specialist, and a doctor. They had already reviewed Caden’s file from MUSC and they reviewed the results from the ENT clinic earlier in the day. The feeding team recommended some adjustments to Caden’s diet since everyone including this team believed that Caden would be getting all of his nutrition and hydration by way of G-tube for an unforeseen amount of time. The doctors actually said they could not give any assurance that Caden would ever be able to swallow enough to maintain his basic nutritional needs.  The feeding team recommendations on diet change leaned towards a more natural diet as opposed to the concentrated (corn syrup based) formula he has been on for several years. To be able to feed Caden pureed foods his feeding tube would need to be a larger diameter. The nurse asked if we wanted to upgrade that day and we agreed. They also were concerned that Caden would begin to gain too much weight on the number of calories he has recently been getting (approximately 1500 per day). They want to bring him down closer to 1200 per day. These changes will be manged by their team and will require an other visit once per year to track his growth.
I had changed Caden’s feeding tube port a few days earlier while we were at family camp in Indiana per Caden’s request. Once he has had a g-tube port in for several months it tends to get corroded and starts to irritate him. This happened and we had a spare in the van, but the spare had obviously been exposed to too much heat in the car and leaked even thought it was new out of the box. So I welcomed a new port even if to do nothing other than to stop the leak. The new g-tube port that is capable of passing thicker foods was obviously larger. Therefore the new port had to go through a hole that had been accommodating a smaller port for years. I asked the nurse if I could insert the new port. I wanted to know how difficult it was to insert since Sherry or I would likely be the ones changing it out the next time. You may remember that I ended up having to insert Caden’s g-tube port in the MUSC ER once because the doctor couldn’t get it inserted. I didn’t want Caden to have to go to surgery to get the hole enlarged back then or this past week so I was willing to inflict a little bit of short term pain if necessary. The new port did not go in on the first couple of tries, but I waited until Caden relaxed between breaths and was able to get it put into place.
Now we are waiting to see if our medical supply folks can order the new natural (pureed table foods) mixture. We are told it is very expensive so we are also hoping that my insurance and/or medicaid will pay for it. At some point Sherry wants to try making her own food for Caden, but that will take some closer coordination (more frequent follow-up visits) with the nutritionist in Cincinnati. We have not had much success with the MUSC nutritionist. The folks in Cincinnati asked who does patient coordination for Caden and they were surprised to hear us say that we did coordination of care and managed his nutrition. We explained an example of why and they said, “ah yes, we read that in his file.” But they were surprised due to the complexity of issues we manage. Most 22Q11.2 kids only exhibit about five out of the 186 presentations associated with VCFS or 22Q11.2. Caden has exhibited three dozen presentations so far with more than a dozen being very serious (i.e. heart defects, swallowing/speech, digestive, or orthopedic/scoliosis related).If you have never seen it you can download a PDF copy of the VCFS fact sheet highlighting the presentations that Caden has exhibited.
Fun in Cincinnati
We visited the Creation Museum and loved it as much as the last time. Caden, Riley and I attended a “Creation Adventure” kids workshop on “Pterodactyls: Flying Dragons” presented by Buddy Davis. The next day we visited the Cincinnati Zoo. Once we got to the hospital on Thursday we explained that we had a desire to spend the remainder of our day at the Cincinnati Children’s Museum. Then we learned that the hospital patient service department has passes for things like the zoo, museums, and other attractions for the entire family of a patient. That is a huge deal financially because it can cost nearly $100 to visit the Zoo or museum without a military discount. We wish we had known this earlier int he week because we could have saved some cash at the zoo, but none the less we were grateful for the pass to the museum. It was a great way to complete our week in Cincinnati. We packed up the next morning and drove to Asheville, NC. On Saturday morning we met Nana and went to pick apples in Hendersonville, but got rained out. We did go ahead and buy a peck each of four different varieties so that Sherry could do some canning. 🙂
Orthopedics PreOp
Caden had his pre-op visit for his scoliosis surgery this week. The nurse told Sherry that this was a serious surgery and began explaining ICU procedures and expectations for how long Caden would be in the hospital. Sherry began to get concerned and asked how this compared to open heart surgery. Then the nurse realized that we had seen our share of ICU and assured Sherry that this was no more serious than open-heart surgery, but this was as big of an orthopedic surgery as you can experience. The nurse later explained that most parents have no concept of their kids being in ICU and being on life support. Caden will go into surgery on the 28th of September. The surgery will last approximately four hours. He will get a sedated echo cardiogram while under sedation.  He will be under the care of the cardiac anesthesia team as a matter of precaution. Caden will then recover in the MUSC PCICU (pediatric cardiology intensive care unit). He will stay there until extabated and stable. He will be on telemetry to watch for heart blocks to ensure that he continues to have no need for a pacemaker.
I will be updating my Twitter page and this blog as things progress during the surgery and recovery time. I plan to post a specific prayer request a few days before the surgery. For now we simply ask that you pray for Caden to have protection from illnesses, infections, and fevers. He ran a full fever (102 range) a couple of nights this week and has shown some oxygen SATs in the lower 90’s. He did get a chest xray on Tuesday and we are thankful that there was no signs of pneumonia. Caden’s pediatrician has some ideas on what may be causing the pop up fevers and low SATs, but I will save that for another post. We thank you for your prayers and support of our family.
PS: The photo is of Caden (being held off the ground by me) getting ready for his first ever zip-line ride at GFI Family camp. He loved it and I was proud of the courage he displayed…after a little peer pressure form Riley who did it two years in a row. More pictures to come..soon.
Posted in 22q11.2, ENT, Fun, G-tube, Scoliosis, Swallowing, Therapy, Travel | No Comments »
August 9th, 2010
We took Caden to see the pediatric orthopedics clinic at MUSC this past week. We ended up having the discussion that we expected, about surgery. The x-rays taken on Monday showed that Caden’s scoliosis curve has progressed to 73 degrees up from 68 degrees in March. Passing the 70 degree mark was a mild stone that we were not looking forward to. According to the orthopedic surgeon a child with a 70 degree scoliosis curve should have surgery to implant rods because the benefit of the rods become less effective on curves greater than 80 degrees and in many cases a severe curve will begin to take up space in the chest cavity that prevents the heart and lungs from developing and functioning correctly. The photo on the right is from an x-ray taken of Caden when his curve was at about 54 degrees a little over two years ago. This was taken from the front. What the picture does not show is that the curve on the right side of his body is that the spine is also curing into his chest cavity.
There are two primary types of straightening devices for children with scoliosis. One is a growing rod and the other is a VEPTR rod. The growing rods are attached to the spine itself. With Caden they are planning to use the VEPTR rods. The top end of the rods are attached to the rib cage and the lower end of the rods are attached to the pelvis. Once the rods are inserted into Caden’s back he will have adjustment surgeries about every six months until he is 12-13 years old. At that time they will remove the rods and fuse Caden’s spine to prevent the curve from reoccurring.
We do not have a surgery date for Caden but we are shooting for mid to late September. We have a vacation in early September that will also be tied with a stop at the Cincinnati Children’s Hospital where Caden will see a multi-disciplinary team that specializes in feeding and swallowing.
This week Caden will see his cardiologist. We do not expect any surprises there. Caden’s last open-heart surgery was nearly two years ago when they performed a Ross procedure.
in other news, I have battled some spells of illness over the past 12 to 18 months. I have had nearly a dozen episodes of nausea and diarrhea that last about 24-36 hours. No one else in the family gets sick and the illness does not seem to linked to food since nearly every time the whole family has eaten the same thing. Our new family care doctor agrees with Sherry that this is not “a bug”. I have been referred to a GI specialist and will be getting a wide variety of tests completed over the next two weeks.
Please keep Caden and the rest of our family in your prayers.
Posted in Cardiology, Prayer Request, Scoliosis | 1 Comment »
July 19th, 2010
Caden has been referred to the Aerodigestive and Sleep Center at Cincinnati Children’s Hospital. Caden’s local ENT (Otolaryngology / Head and Neck Surgery) specialist has reached the end of his tool belt in terms of treating the swallowing challenges that Caden has battled since birth. Caden will be six years old in just a few months and has never swallowed anything, not a single bite of food, drink of water, not even his own saliva. We still feed Caden exclusively with a feeding tube five times per day including two 10 ounce boluses of water for hydration. The trip to Cincinnati Children’s will connect us with an interdisciplinary team that deals with feeding disorders and upper digestive tract problems among other things. We are blessed to get the appointment scheduled during a week when we were already going to be in the Cincinnati area. We will be tying this appointment into a vacation to Indiana. We were already planning on stopping for a day and visiting the world famous Creation Museum just south of Cincinnati on our way home from Indiana so this appointment works well with our plans.
Caden will be visiting the orthopedic surgeon here at MUSC in a couple weeks. This appointment will include the big discussion about surgery. I wrote a post in late March titled Taking Inventory After MBS that included details about our last appointment with the orthopedics clinic:
The surgeon basically told us that the time has come to ready ourselves for surgery. The surgeon sees the curves in Caden’s back  reaching a point where modern medicine calls for surgical intervention. There comes a point with most scoliosis cases where the spine can interfere with the growth and/or functionality of the lungs. The surgeon believes that we are approaching that point with Caden and has recommended that rods be surgically implanted into Caden’s back within the next six months to begin to straighten the spine.
We are not looking forward to this appointment. Surgical intervention for scoliosis is not something that we are looking forward to as it would put Caden on a regular hospitalization approximately once every six months to get the device adjusted as his spine grows.
We would greatly appreciate your prayers for Caden. Sherry and I need prayer for discernment and wisdom as we enter into these next few weeks and months with Caden. Please pray for us as we make decisions that affect Caden’s comfort and quality of life.
Posted in 22q11.2, ENT, G-tube, Prayer Request, Scoliosis, Swallowing, Travel | No Comments »
June 11th, 2010
Caden may have aspirated this week during a choking incident. Late morning Wednesday I was sitting at the kitchen table while Caden played on a blanket in the family room with some Legos. Sherry was in the garage cutting JJ’s hair and Riley was in the play room. All of a sudden Caden jumped up from his blanket in a panic and started coming in my direction. Caden was obviously struggling to breathe. He was getting a small amount of air in and out and I thought he was having a really bad retching spell. My initial reaction was to pick him up and throw him over my shoulder and run upstairs where I knew the suction machine was located. I lay Caden on the floor at the top of the stairs next to the suction machine. I turned on the machine, opened Caden’s mouth and inserted the Yankauer (suction tube extension used to reach into the back of Caden’s throat). I hit something hard with the Yankauer that I had not seen when I opened Caden’s mouth. I did a finger sweep down the side of Caden’s mouth into the area just past the uvula. What I got back was a surprise. It was a jet engine from a Lego airplane. This pecan sized toy was lodged in Caden’s throat and covered with goobers. I have no idea how he was getting any air around it to make the retching noise I heard when I scooped him up down stairs a few moments earlier. I got the Lego piece out of his mouth and then suctioned the remaining goobers and saliva. When I turned the suction off Caden jumped into my arms and could only say “Sorry Daddy, Sorry Daddy, I sorry daddy”. My heart was racing about a mile a minute and I felt like I could cry. I just held Caden and assured him that he would be alright.
Everything did appear to be okay until late Thursday night. Caden popped a fever, had high respirations (common with fever) and had a ton of congestion. Friday morning Caden did not tolerate his first tube feeding very well. He just wanted to lay around and then the speed of his breathing began to increase. I went ahead and put him on the Oxygen saturation meter to check his SATs. He was hanging in the low 90s. This all happened as his physical therapist was arriving at our house. She, Sherry and I had a brief discussion about the incident on Wednesday as I suspected that Caden might have sucked fluid int his lungs while he was struggling to get air around the toy stuck in his throat. I went ahead and called the pediatrician and took Caden in shortly after lunch. The doctor heard some crackles in Caden’s lower left lung and his SATs were hanging at 93 in the doctor’s office. We were sent to MUSC for a chest x-ray. Within the hour the nurse called Sherry to let her know that the doctor had called in a prescription for Clindamycin a very strong antibiotic used to treat aspiration pneumonia.
We are treating and monitoring Caden at home. We ask you to pray that this treatment will work. With our new addition (two-week old Levi pictured above with Caden) we are by no means prepared to handle a hospitalization with Caden. Of course I am not sure we are ever 100% prepared for Caden to be hospitalized. The pediatrician said that if Caden had not improved in 24 hours we needed to get him admitted and on IV antibiotics. We appreciate your prayers for Caden and our family. Please pray for healing for Caden and discernment for Sherry and me.
Posted in Prayer Request, Swallowing, Therapy | No Comments »
June 3rd, 2010
Caden is a big brother to two little brothers now. His baby brother Levi was born Friday morning. Mommy and Levi are both doing great. Levi went in for a little check-up today with the pediatrician to confirm all is well. However it did not take long for attention to turn to our big boy Caden. The pediatrician asked how he had been lately and I told the pediatrician that Caden had popped a 102 plus fever a few times in recent days. I told the doctor that it was not unusual for Caden. The doctor was not as easily convinced since Caden is on week three of a four week run of a very strong oral (g-tube) antibiotic. After a few minutes of evaluating Caden the doc recommended that we move to a three day round of Rocephin shots. I will be taking Caden back in for shots the next two days and then we will see where we go from there. Please keep him in your prayers.
Posted in Prayer Request, Pregnancy | No Comments »
March 23rd, 2010
The lesson tonight in our Growing Kids God’s Way class was titled “Rejection: Man’s Greatest Fear”. The lesson Gary Ezzo delivered in the video ended with a point that could not have been more divinely placed in our lives today. “”Take inventory.” While Mr. Ezzo gave this suggestion in the context of the fear of rejection in our relationships. While we did not face rejection today we faced one of the most depressing and defeating days we have experienced in a long while.
Today we took Caden to MUSC. We visited the Orthopedic Surgeon. There Caden’s spine was x-rayed before we met with the surgeon to talk about the diagnosis of scoliosis. The surgeon basically told us that the time has come to ready ourselves for surgery. The surgeon sees the curves in Caden’s back  reaching a point where modern medicine calls for surgical intervention. There comes a point with most scoliosis cases where the spine can interfere with the growth and/or functionality of the lungs. The surgeon believes that we are approaching that point with Caden and has recommended that rods be surgically implanted into Caden’s back within the next six months to begin to straighten the spine. We have an appointment to meet with the surgeon again in late July to discuss this further.
From that appointment we made our way to the new cafeteria. We had lunch and ran into our favorite nurse from all the years we have spent at MUSC in and our of the PCICU. Nurse Kay was the nurse who broke the rules ICU rules that says no one under 13 years of age is allowed. She allowed us to bring 2 year old Riley into the PCICU to meet his 5 day old little brother Caden. We learned some time later that Caden was no expected to live through the complex open-heart surgery scheduled for the next day. The nurse was not certain that Riley would ever get to see his little brother alive if not allowed to visit that day. Seeing Kay
We left lunch and went up to the main MUSC hospital radiology department. There Caden went through a Modified Barium Swallow (MBS). The results of the MBS were not what we had hoped and prayed for leading up to today. The MBS results were unchanged from any we have seen since Caden’s birth. Tears welled up in my eyes as Caden climbed from in front of the video fluoroscopy and squeezed my neck. He heard the results and all the folks in the room could say was that they were sorry, they were sorry that they could not deliver better news.
We then went to meet with Caden’s ENT who performed the cricopharyngeal myotomy just over two weeks ago. He said that all had been done surgically and that anatomically Caden should be swallowing. He said that this is just one of those 22q11.2 things where Caden is not following the rules in the medical journals. The ENT ended with a recommendation for some monitored feeding therapy over the next two months and then we would reevaluate things. This therapy is to try and teach Caden some swallowing functions that should help push stuff past the Upper Esophageal Sphincter (UES). If we can prove Caden has the physical ability to get food past the UES then he will be much more likely to be a candidate for a more aggressive feeding and swallowing therapy like the one we have looked at in New Jersey. Right now Caden’s ENT does not think Caden would be accepted into an aggressive feeding and swallowing program since he has never shown any signs of passing a bolus through the UES in any of the previous swallow studies.
So this long day at MUSC left us in tears over Caden’s medical challenges once again. We came home where I got down on the floor and enjoyed playing cars with all three of our boys while Sherry finished preparing the house for our class. After dinner Sherry and I sat and found ourselves in tears once again as Mr. Ezzo reminded us to “take inventory”. When feeling rejected, or defeated in our case, taking inventory of what you have rather than dwelling on what you are missing is great medicine and it is a message straight out of God’s word. I will paraphrase another line from Mr. Ezzo that rang true with us tonight, “Contentment is much more important than our worldly happiness.” Tonight we rejoice in what the Lord our God has given to us.
Posted in 22q11.2, ENT, Power of God, Scoliosis, Swallowing, Therapy | 2 Comments »
March 22nd, 2010
Please remember our little Caden in your prayers today. Caden will visit with the orthopedic surgeon in the early morning for a six-month follow up on the scoliosis diagnosis. Then Caden will have a Modified Barium Swallow (MBS) to test is swallowing ability. We will then have a visit with Caden’s ENT (Ear Nose and Throat) surgeon in the afternoon to talk about the next step with feeding and swallowing.
Please pray for positive results from all of these appointments today.
Posted in ENT, Prayer Request, Scoliosis, Swallowing, Therapy | No Comments »
March 15th, 2010
It has been about 10 days since Caden got the cricopharyngeal myotomy. This surgery was preformed to divide (cut) the muscle that causes the UES (Upper Esophageal Sphincter) to squeeze closed. The surgery itself was completed as planned without any complications. Caden did experience some respiratory issues from being intabated (on the breathing machine) during the surgery. This required oxygen at night for about a week after the surgery. He also had a fever during a couple of nights after coming home. Sherry took him in to get some medication to treat the symptoms and he is now doing great. Caden is off oxygen and is now sleeping through most nights without even needing any suctioning.
Next Monday will be a big day for Caden. He will see the orthopedic surgeon for his six-month follow upon the scoliosis diagnosis. Later in the same day (Monday 22nd) Caden is scheduled to get a MBS (Modified Barium Swallow). We will go straight into see the ENT to get the results.
Posted in ENT, Scoliosis, Swallowing | 1 Comment »
March 5th, 2010
Today was the big day. Caden had a surgery called a cricopharyngeal myotomy. This surgery was preformed to divide (cut) the muscle that causes the UES (Upper Esophageal Sphincter) to squeeze closed. In Caden’s case the muscle has never relaxed enough to allow for him to pass food, drink, or even his own saliva into his esophagus. That is what has required him to have every single meal of his five years of life via a feeding tube. Once this surgery heals for a couple of weeks we I will take Caden in for a MBS (Modified Barium Swallow). Sherry being pregnant will not be able to be in the room with all of the radiation. The expected results should show that Caden is ready to learn to swallow. At that point we will begin to arrange for advance feeding and swallowing therapy. I am not 100% sure we will be able to get what we need locally so stay tuned for what the next step will be.
Lots of Blood and a Sedated Echo Cardiogram
While Caden was out for the surgery today the doctors pulled about 20 tubes of blood for his immunology workup and the MUSC pediatric cardiology team slide in for an echo cardiogram. They like for kids to be as still as possible and most five year olds can’t or won’t stay still long enough. They forget that Caden demonstrates very good self control for medical procedures.
I will give a shameless plug here for the lessons in Growing Kids God’s Way and other teachings by Gary and Anne Marie Ezzo that have taught us that parents have a much harder time with training things like self control than do the children. The kids will come along the way if parents have the conviction and dedication to maintain consistent character training. The cardiologist at MUSC obviously don’t meet enough kids whose parents have the conviction and dedication that I am talking about. None of our kids including Caden have perfect self control and never will, but we stay the course and strive to rise above the level of mediocrity as taught by Joey and Carla Link of Mom’s Notes.
Prayer Requests and Praises
Praises:
- Surgery completed as expected without complication
- Caden is fever free
- Grandparents and Nana
- Friends who visit and/or lift our family up in prayer
Requests for Caden and our family:
- Rapid healing
- Remain free of infection
- Comfort and free of pain
- Understanding and compassion from Riley and JJ
- Healthy and rested Daddy and especially Mommy
- Continued health of Baby Ozz 0.4 (we do not know the gender)
Posted in 22q11.2, Cardiology, ENT, Hospitalized, Prayer Answered, Prayer Request, Pregnancy, Swallowing, Therapy | No Comments »
We have received some inquiries on the results of the visit to Cincinnati Children’s Hospital. We did visit Cincinnati Children’s as planned during our recent vacation. We saw two clinics. We didn’t really hear anything new in terms of ideas to get Caden to swallow from the first clinic (ENT). Caden’s local ENT doc had already told us that Caden might benefit from more aggressive feeding therapy. The docs in Cincinnati confirmed this approach. The folks in Cincinnati performed a FEES (Flexible Endoscopic Evaluation of Swallowing) study. This is a test where they stick a very small camera up the patient’s nose and watch the swallow (or attempt in Caden’s case) in progress. Caden did not show any signs of a coordinated swallow and his upper esophageal sphincter did not open. The purpose of the aggressive feeding therapy would be to try to train Caden’s neuro-muscular system to perform a swallow when certain textures, temperatures, or flavors are put into his mouth. The trick is for the therapist to be aggressive enough to push Caden’s limits without causing him to aspirate and get pneumonia. The ENT docs said it may take causing some aspiration to figure out how far Caden can go with therapy. So far no-one has been been comfortable with pushing Caden that far. 