So in discussion with the team yesterday, if Lennon can tolerate his feed and gain weight (which is not their strongest arguement) we are looking at taking Lennon home friday. That will make it 108 days away from home. They stopped his lasix and other diarrethics (sp) and so here is to urinating on his own, which he really hasn’t done in a long time either since the fluid situation. He still has a small plural infusion on the right side, and so they are going to take an X-Ray tomorrow to make sure it did not get bigger.
He will be on the NG feeding and get 135 ml of KidsEssentials 5 times a day. We encouraging him to drink on his own because if not we will have to add water to his feeds. He will also have a wheelchair for the time being for when we go long distance (dr. appt., stores etc). Of course he won’t be needing it in the house but longer walks and such would still be too much on him. His recovery is probably taking longer than everyone had anticipated, but then again who anticipated the last three months?
Since he has the NG tube, he has been assessed for qualification of skilled nursing care at home for about 16 hours a day. Now we don’t need quite 16 hours, but about 8 hours would help! Our work schedules, sleep and study schedules are all over the place. I am hoping to change hours at my job so that I am available in the evening and at night, or at least be more flexible when it comes to juggling everything. Though I am not sure what this may entail yet as I love what I do :o)
Long term in Lennon’ recovery if the move of going from here to home is not improving his feeding problem, he will receive a G-tube as that would be easier to deal with in regards to his feeds. This means another surgery, it also means taking more precautions about keeping and staying clean. In discussion, there seems to be little worry about infection and Lennon being immune suppressed, and the thought is that he shouldn’t do any better or worse than other children who have received the G-tube. But this will only happen if he does not start eating!
In the mean time we will work out the schedule we must maintain…Mondays & Thursday is Blood draw day…and then he receives physical, occupational and speech therapy…at least once or twice a week…we have other kids who have appointments as well…so I can see us having to drive into down at least 3 or 4 days, but I will take that if it means to eat, sleep and shower at home!