Still home

kimh · #1 01-24-2006, 11:29 AM

Well we have amde it thru three full weeks at home. Matty was sick last week and I thought we were going to have to take him in on Saturday , but we made it he is well on the road to recovery and things are back to normal. He was on increased O2 while sick and it seems to be taking a few days to wean back, I assume this is fairly normal??
Also I would like to start to really work on weaning his O2 ( he is currently comfortable a 2 liters) how do I go about this?? Just lower a little each day and let him get used to it?? His sats drop slightly but after a few hours he seems to adjust, is this okay?? We have gotten rid of the rate on his vent completely so it is no longer taking breathes for him (yeah) and he is fine, we are also lowering the calories on his formula and upping the amount he gets each hour, I am watching carefully for any respirtory changes so we don't overload him with fluids. can you think of any other ways to start weaning this vent slowly without too many issues?? I would love to be able to get rid of it by the end of the summer!!!
THanks
Kim

LeslieML · #2 01-24-2006, 11:55 AM

I would just check with the doctor about weaning anything! That's what I always did. Great Job on weaning from the vent!
Leslie

sandra · #3 01-24-2006, 11:58 AM

Coming off O2 can take a long time. Brian is still on it at 2 1/2 years. We wean when his sats are high and watch. If he starts falling into the 80's, I put him back up.

Weaning from the vent. I would think your dr would tell you what vent changes to make. We always got dr's orders for that. We didn't wean Brian without an order. If the dr's told you to go ahead, be careful that you go slow. We found that if Brian was pushed too quickly, we would take a huge step back after a week or so.

Fluid overload was a huge problem for us, too. We bought a infant scale and I watched Brian's daily weight closely for a long time. Brian really struggled and ended up in the hospital for IV lasixs a few times even with close monitoring.

Ann · #4 01-24-2006, 12:53 PM

I agree with everyone else. Â*You are a nurse, so I'm sure you know this, but watch his heart rate. He may be able to keep his sats up without the oxygen and no vent rate, but obviously, if he is working harder to do it, you'll notice it with an increased heart rate. Â*Also, you don't want to work him so hard he has no reserves should he get sick.

Melisande · #5 01-24-2006, 09:14 PM

Just like everyone said, vent weaning is usually coordinated with the pulmo. Many people will do sprints or trials off the vent for short periods of time. O2 we did very slowly. It was weird too, because it took like 6 months to get off o2 and for at least a month he was only on like 1/32nd of a liter. For some reason, that small amount was hard to finally get rid of. We keep O2 around because D needs it when he is sick only now.

Whitney · #6 01-25-2006, 12:49 AM

Like everyone said, we never proceeded with major things like med changes, CPAP weaning, or O2 weaning without doc orders. We always discussed Alex's progress with the docs and formulated a game plan together. From there, she'd write the orders per parents instruction and we understood what warning signs to watch for. If Alex didn't tolerate the change, we would go back to baseline. We learned not to push Alex too far too fast. We too were amazed at Alex's progress once we got him home. Still, we remembered how sick Alex had been and progressed very cautiously. I swore up and down I wasn't going to end up in the hospital again and anytime I got antsy, I reminded myself of that.

As for Alex..
It took him almost 2 years to wean off O2. Towards the end, Alex was on 1/4 L for a LONG time. A few weeks after he came home, we was on 1.5 L and it took us 18 months to wean off completely. Alex was on CPAP for the first 7 months and we spent another 3-4 months weaning completely off CPAP. We never did more than one change at a time. If we were weaning CPAP, we kept is O2 the same. If we were weaning his diuretics, we kept his CPAP the same. We made a slight change and monitored him until we felt he had tolerated the change. We always watched for signs of distress along the way (increase in O2 needs, lower overall sats, changes in heart rate, changes in personality and energy levels, secretion changes, etc).

Hope this helps some. I'd run your ideas by your doctor (if you haven't) and get a long-term plan established. Now that he's home and settled in, you can get some ideas about the road to decannulation. Try not to push him though (that's just my own 2 cents)...