A Very Busy Day

Today, like yesterday, were very busy with the number of people coming and going. Mason has been a champ at tolerating these multiple doctors, residents, interns, medical students and nurses as well as the dietitian, speech pathologist. Each and every one has something to add to the clinical picture and our "plan" (which I put in quotation marks because it is ever changing).

I'll give the update by medical discipline as that's really how it was presented to us today.

Pediatrics: These are the attending doctors, or case managing doctors, that oversee Mason's care while in the hospital. Apparently the running theory on his increased oxygen need is that he has grown too fast for his lung capacity and he is needing more oxygen because of it. Add to that he needs more oxygen when he has the dumping syndrome symptoms and we have the recipe for disaster that landed Mason back in the hospital.

GI: We are really unable to "fix" the dumping syndrome symptoms. By decreasing the amount of food Mason gets per feeding, we can manage the symptoms. The only treatment is to wait for his stomach to grow with the rest of his body and accommodate to the changes that happened with surgery. This should happen, but will take time. Mason had a glucose test (similar to what diabetics get) after one of his feedings today and found that his blood sugar was at a good level. We're not really sure what that means because with dumping syndrome patients usually have a drop in blood sugar right after eating. Guess we still have stuff to work out. Tomorrow the doctor is going to do a test where they put dye into the stomach and watch it via xray as it moves through his system to see if everything is normal structurally. The GI doctor wants to make sure that all feedings are tolerated well and that we rule out any structural issues before she is okay with Mason going home.

Nutrition: This really goes hand in hand with the GI doctor, but warrants it's own section. We are changing the calories that Mason is getting so that his length catches up with his weight, then hoping to sort of restrict his weight gain so that there's a good ratio of weight to length. Mason is in the 5th percentile or so for his weight and length, but with the weight/length ratio, he's in the 85th or 90th percentile - meaning he's too fat for his height. Quite a far cry from the failure to thrive that we dealt with last summer. Bill and I are going to keep a better eye on the recommendations from the nutritionist so that we don't have the same problem as this past month with too many calories for his weight.

Lung Doctors: Overall, Mason's lungs sound as good as they do normally for him. Add to that his chest xray was the same as just after surgery (when he only needed 1 liter of oxygen) and there really isn't much to do here. The doctor is going to look into an alternative to the prednisone that Mason is on because being on it too long can do some damage to his already fragile lungs and has the potential for growth and brain development problems. As always, we have had to weigh the benefits of breathing with the possible side effects and always side with the ability to breathe. Hopefully there will be some possibility of an alternative that doesn't have so many potential side effects.

Speech: We met with the speech pathologist today, too and have decided to stop the feeding by mouth until the cold/flu season is over. While we don't know for sure that the eating contributed to this increased oxygen, we can't say for sure that it didn't either. Just too many variables. So, we are going to take the cold/flu variable out of the mix and will move more slowly when it comes time to start again. While I am sad that he won't be able to eat some birthday cake on his 1st birthday, I know it is for the best and will help the feeding be more successful at another time.

Like I said, it was a busy day today. In terms of how he's doing, Mason continues to need more oxygen than normal. He was able to get down to 2.5 liters last night, but has been at 4 liters most of the day. Granted, this is much better than the 6 liters he was on on Tuesday, but not yet what he is at baseline. We'll probably be here for a few more days as he gets on a good feeding regimen and gets his oxygen need back to baseline.

Thanks for everyone's thoughts and prayers. We are so grateful for your support!