So close we can taste it…crossing fingers & toes

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!

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One thought on “So close we can taste it…crossing fingers & toes

  1. My computers down for a few days and I miss sooo much. Wow, what wonderful and exciting news to read. I can “hear” the anticipation in your writing. I’m glad that you feel comfortable with the idea of going home and caring for Lennon at home … that is so much better then feeling like you’ve been kicked out and are not quite sure what to do. It’s so great when we know our kids well enough that we are confident to care for them. Of course, this doesn’t mean we’re not going to have our questions and discouraging times, but at least you’re ready to tackle the task at hand.As you mention, this does not look like an easy task … driving back and forth almost every day is wearing and tearing … but you are already doing that right now … and at least now at the end of the day you will be home (of course depending on the work schedule, but you know what I mean) and all in one place. Having the constant appointments and therpies can also be a means of staying confident in what you are doing as he will still be closely monitored and they will be able to pick up if there are any problems that shouldn’t be left too long … in a way these many appointments can be seen as a good thing as you are not left out on your own for too long.I hope that you are able to get good nursing care that doesn’t cause you more grief then it’s worth and allows you to feel comfortable to leave Lennon. At least they are being fair in the number of hours they are giving you. Don’t too quickly say you don’t need those hours, as it’s harder to get them back then it is to give them up (at least that’s how it works here, hopefully it’s better your way). But it sounds like you are like me and you are the one who wants to be caring for Lennon. I know I didn’t like the idea of nursing unless absolutely necessary because I felt out of touch with James when I wasn’t completely caring for him. It became hard to remember the issues and to feel like I had complete understanding of how he was doing. Fingers and toes crossed that Friday is the day!! Praying for you!

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