Still here- updates
We have has a lot of exciting events since our last post. First and foremost, Paul was put on a medicine called digoxin to improve ventricular function and his heart function has been improving to some degree. We are not out of the woods yet but certainly on the right track. The more challenging news is that we are still trying to get Paul’s fluid balance under control. He is currently STILL on IV lasix and per tube diurel. We have to figure out a diuretic regimen that works for him to get him home. The other bad news is that since the catheterization Paul has had a repeat swallow study. In this study we learned that he is not able to eat by mouth at this time. He is aspirating both regular and thickened liquids. He is having trouble swallowing and is having a lot of trouble with secretions as well. He has had a hard time with oxygen saturations and we think it is due to both diuretics and aspiration. We also had a Fiberoptic endoscopic evaluation of swallowing (FEES). FEES assesses swallowing without X-rays. A FEES also shows how well a person swallows saliva, and can show if secretions, liquids, or foods are aspirated. That confirmed that essentially, Paul is unable to swallow anything in his mouth. This means that we will probably be going down a path of getting another surgery. This surgery is called a Niseen fundoplication and g-tube or Nissen G.
In the Nissen fundoplication, the upper part of the stomach is wrapped, or plicated, around the lower end of the esophagus and stitched in place. The esophageal hiatus is also narrowed down by sutures to prevent hernia. This prevents him from reflux and vomiting. A Gastrostomy Tube (G-tube) is a button on skin-level placed into the stomach through the abdominal wall. Paul will be fed directly into this tube, directly into his stomach. The photos below should explain more. We are praying for a quick recovery for Paul from this procedure. There are risks and benefits and we have thought long and hard about it. The bottom line is that he NEEDS his lungs to be in perfect shape for the future and we simply can not have him aspirating anything that goes in his mouth, including reflux. We will know for sure if and when Paul will have this procedure by the middle of the week.
In the meantime he is LOVING visitors, wagon rides, playing, PT, singing, reading and watching cartoons. We count it an incredible privelage to be his parents and are in HEAVEN with him and each other. We thank you for your prayers and hope and help. Check out the outfit from Marley Haas and parents- SO CUTE!