Yesterday he saw the ENT doc to try out his custom trach. This is a longer flexible shaft trach. I was very disappointed when we discovered that it not only wasn't better, but was actually the worst of all! He thought the longer length would prevent it from tipping back and occluding against the back wall of his trach, but that is exactly what it did. I think the flexible quality of it may have been the problem. He will now try ordering a custom (non flexible) Shiley trach, which is the brand he is used to. I think the angle of its curve fits him better. The doc looked down Ambrose's trach with the various trach tubes in place, with a scope attached to a video monitor, so we could all see. I asked him to scope him with his current (4.0 Pedi Shiley) trach while sitting in his stroller. It confirmed my suspicions that his trach partially occludes while in his stroller seat. It did not seem to do this with the previous (4.0 Neo Shiley) trach tube.
Today his primary hospital doctor and her fabulous nurse did a home visit. Can you believe there are still doctors who do that? A very busy and wonderful neonatologist at that! She thought he sounded pretty good and that he had had a virus and probably picked up an additional bug or two in the hospital. She said he is "over reacting" to his virus by producing too much secretions to try to fight it but that he will probably be better in a few weeks. I sure do hope so! We also discovered that his home CPAP only seems to be delivering a PEEP of 3 to 4 cm instead of 5 (probably due to higher O2 flow rates in the hospital) but it seems to be sufficient for him.
He also had a fever last night just to keep me guessing. Fortunately it disappeared and did not come back.