Details and pics to follow in a long post when we get home!
We had an incredible time at the blue angels air show and at mito camp! We have had a good week of appts and are hoping to be home by the weekend.
Monday we saw ENT. They feel like Alex's adenoids and sinuses re both okay to just watch at this point unless they begin causing more problems. We do need to start ear drops to break up a ton of impacted wax in his ears that could be efecting his hearing. The next time Alex goes to the OR they will clean out his ears.
Tuesday we saw Dr. Navarro (GI). He was absolutely thrilled with Alex's weight gain. Alex has gained 4 lbs since starting our 3 nights a week of TPN. He is on the weight chart at the 1%. His BMI is also on the chart now. We will continue the TPN for the forseeable future because of the good results. We also discussed Alex's liver and the concerns about future liver failure. We will set up a consult with the liver transplant specialist at the hospital so we can understand the process and the testing we would undergo if a transplant becomes necessary. Other then that we will keep everything the same.
Today we saw Dr. Pacheco (immunology). She is also happy with how he is doing. We will run some labs. We also performed a Pulmonary Function Test that looked good.
The bad news is that once again Alex's port is not drawing back. How many times have I blogged that in the last few years!!! Alex's surgeon called me today and once again we have decided to go to all costs to save this line. Alex will be admitted tomorrow morning. He will have a chest xray to make sure the line is where it should be. Then they will TPA it. Assuming the blood return is back we will be discharged. If we can't get it working, Alex will go to surgery Friday morning to replacet he line. I have no reason to believe this will be any different then any other time, so I expect to be in and out of the hospital.
In the meantime, we are enjoying time in our second home with our "other" family! As I promised a much better post when i get home!