August 1st John met with the Trach vent clinic team, which consists of his ENT, pulmonary, trach specialist, speech, & dietitian.
Dr. Powitzky was pleased with John. He said everything looked great with his tubes, trach site, the tonsil and adenoid removal. He wants to follow up with John in 3 months unless something comes up sooner. I did talk to him about the sleep study, if he still shows some obstructive apnea, we will then find out what the next step will be. Dr. Powitzky said that he shouldn’t since he will have the trach, but if he does, we will talk about the next step then. As in what the next step would be, I am not sure.
We saw Svenja. She loves how much John has grown from the scrawny little boy he was before his trach to this chunky toddler. She admitted she is amazed with how much he has grown.
Dr. Ogborn said the sleep lab is up and running now. We will get a call about scheduling it since the scheduler wasn’t there at the moment, which has now been scheduled for August 16th! (If you can’t tell, I am extremely excited about it.) Dr. Ogborn wants to have half of the sleep study off the ventilator and the other half on the ventilator to get a good idea of what type of settings John may or may not need. Also, hopefully he will not need the ventilator but when he is sick or that we can start vent weaning at night. We will follow up with Dr. Sagar on August 26th with the results of the sleep study. However, Dr. Ogborn is still our primary pulmonologist, Dr. Sagar is the sleep trained pulmonologist so we must see her for the sleep study, but Dr. Ogborn will be apart of the meeting when we talk about the results.
The dietitian is excited for his growth. Since we follow up with Dr. Ramprashad on August 24th, we are going to try to start weaning his bolus feeds during the day to about 45 mls vs the 90 mls. We will readjust if need be when we see the GI doctor.
Hard to believe that Joseph turned 6 years old on August 6th. It doesn’t feel quite that long ago. He had a great time with cousins, aunt, uncles, Nay Nay, mom, dad, and brothers. He had an American Ninja Warrior themed party.