CDH Clinic - Long Update

Thursday was Mason's big day at the UofM CDH Clinic. Even though he had to wake up early for his appointment, he seemed to be in a good mood for the day.

First, Mason saw the same Physical Therapist that treated him while he was in the NICU. He did an evaluation to see where Mason falls on the charts for his gross motor skills. Right now, Mason is at a level equal to 10 months and 3 weeks. This was not really unexpected news for us, as we are currently working with Early On to try and get him caught up. The therapist thought that if we really challenge Mason physically at home, he may be able to catch up at a faster rate. We will share this info with his Early On therapist to try and develop a more structured program for him.

Mason saw a dietitian next. Overall they are happy with his weight gain and size. He is in the 80% for weight and 75% for height (on a scale corrected for his prematurity). We have a plan to modify his feeding schedule slightly so that he will only get 3 boluses during the day and 4 to 5 hours of continuous feeds at night. It will take us about 4 weeks to get to this goal if all goes well. The plan is the modify it slightly every week until we reach his new goal. The reason behind this new plan is to space out his feeds by at least 4 hours to allow more time for hunger to develop.

Next we saw an Occupational Therapist. It was nice that this therapist has some prior experience with Mason (from last week's appointment). He is showing some very positive signs that he is ready to venture into eating. Lately he has been drinking more and more water and even drank 2 and 1/2 ounces one day last week. He is also willing to explore and taste and variety of foods now. Tonight he even ate 4 to 5 small bites of vanilla pudding, a huge step for him!

Next we saw the Pulmonologist. They are very pleased with his progress so far. His lung function falls within normal range, but on the low side. Given Mason's history, they were not expecting results this good. We are all amazed at how well he has done in this area! The plan is to continue with his breathing treatments until winter is over. In the spring, they feel that we might be able to discontinue them since he does not show any obstructions when breathing.

Next we saw the Pediatric Surgeon. He was very impressed with Mason's progress so far. We reviewed his latest chest x-ray from last month and there seems to be some areas of concern. Mason's CDH was on the right side, so it is difficult to tell what is really going on. We did see some bowel above his liver, but it looks to be beneath his diaphragm. We are hoping that he did not reherniate, but we know this is very common in kids with a patch. Right now, the plan is to take another x-ray in 3 months. We will be watching him closely for any signs that might indicate a need for quicker action.

Lastly, we saw the Cardiologist. Mason had a heart echo on Monday and the results were good. He does not have any pulmonary hypertension at this time. This is pretty much what we expected since he did not have to struggle with this at birth. They had a hard time seeing all of the pulmonary veins and how they returned to his heart. There were many factors that played into this: his age, the fact that he was sedated and he has some strange anatomy in that region (one of the reasons ECMO was difficult for him). The plan is to see the Cardiologist yearly and then get another heart echo when Mason will tolerate it while awake, usually around age 3 or 4. The great news is that he shows no ill effects of having ECMO cannulation through the heart. His heart murmur has also seemed to disappear.

Mason will return to the CDH clinic in 1 year. Until then, he will continue to have individual follow-up appointments in each area. His PT and OT schedule will remain the same.

I have to say how proud we are of Mason. He was one of the sickest CDH kiddos that UofM had and now he is doing great! We were reminded of how much a miracle he really is!! We have received such great medical care from UofM and have such a wonderful network of friends and family that have prayed for and supported us. We have so much to be thankful for.