So, Lennon is doing better but still has a bit of recovery to do. The removal of the old port went well and was very much necessary as the yeast literally stuck to all the parts of it. He now has a different type of port that is external and tunneled into his vein or where ever it went.
The chest tube that went in, came out today :o) so that’s a plus. They started feeds via NG tube yesterday and he has been tolerating this quite well. In addition, they added a new medication that is supposed to bind his stomach contents a bit and slow down the massive
Other developments are that the G-tube is becoming more likely. While hesitant and fighting it is becoming a necessity. The NG tube could be more damaging to Lennon in his nose, throat and even the stomach and the G-tube is much safer in that regards.
It doesn’t make me worry less about his infection risk but we don’t want to add injury when not necessary. Until his feeding issue is under control he will require additional assistance via feeds. It could very well be years before he recovers from the feeding dilemma. While he is a master at eating chips, he no longer is interested in french fries or anything else.
In part, I think because he is in the hospital because at home he was beginning to eat different foods, but still not enough to be considered nutritious for what he needs. The G tube surgery will not happen within the next week, but possibly within 2-4 weeks. This can be done as an outpatient
In the process of it all, yeast infection and fluid collection, Lennon has developed airspace lung disease, and the best I can tell you is that it labors his breathing. It is not pneumonia but acts similar when it comes to the breathing aspect of things. The air space lung disease should get better/go away once the yeast is completely gone. He is requiring less oxygen 1 liter as opposed to 2 liters. He is still in ICU, and until the PICU docs feel he can go to the floor he remains here, unless space for the PICU becomes an issue.
In the meantime, we are hanging in there, making the best of things. Going to work, going to school and ensuring our other kids are taken care of. It is not always an easy task to do but I suppose we are up for the challenge once again.