Our 8 week check up

Today we met with Grant's cardiologist at U of M. One positive piece of news was that they want to try Grant off oxygen during the day and keep him hooked up to it at night! I am so excited for Grant to have less tape on his face, and so excited for the freedom to roam the house without tubes. I will have something to monitor Grant's oxygen saturation levels during the day while he is off so that I know if he is doing okay. If he drops below a certain number, I just hook him back up. We can't start this until next week when we get the tool to measure his saturation levels.

The not so good news is that Grant's lungs still look bad. Worse than they should at this point. They are concerned that he might have pulmonary lymphangiectasia. Here is a brief explaination (from google):

Pulmonary Lymphangiectasia is a condition in which there are widespread dilation of the lymphatic channels in the
lungs. This can be a part of generalized lymphangiectasia or a primary pulmonary developmental abnormality. Where
there is no evidence of cardiac disease this condition seems to present either at birth or later in infancy.
The cause of Pulmonary Lymphangiectasia is unknown. The signs of PL can sometimes be seen prenatally, but most
commonly postnatal. Many infants are stillborn. The newborn infants show respiratory distress. The typical presenting symptoms include rapid breathing, and recurrent cough or wheeze. An examination of the patient usually reveals the presence of fine crackles throughout the lungs.Diagnosis of pulmonary lymphangiectasia can be difficult. Although chest x-rays are usually abnormal, the x-rays can reflect fluid in the chest cavity or lung tissue. Chest CT scans can show patchy areas of fluid and over inflation in
PL patients. Most patients who survive through early infancy continue to have respiratory problems (wheeze, recurrent cough, and
pneumonia) in the first several years of life. These patients also seem to have other medical problems
(gastrointestinal reflux) common to patients with chronic lung disease.

Evidence has shown that symptoms improved in most patients after infancy and were notably better by the age of 6
years old. (Some stay on oxygen until they are 5 years of age.) The only treatment is medical support until patient is no longer in need of support. The evidence suggest that primary pulmonary lymphangiectasia does not have as dismal a prognosis as in most cases and clinical findings improve after the first year of life.

So, please pray:
1. That Grant's lungs heal completely and that he doesn't have this rare condition
2. That Grant's body adjusts well to tapering off oxygen
3. That Grant's acid reflux would go away. (still throwing up several times daily)

We go back to U of M in 6 weeks for a slew of tests. They'll decide then if we need to see a lung specialist based on Grant's healing at that point.