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.
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 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.