We had been on inhaled Tobi, which added about an hour total to our already packed schedule. Now that he's on IV, we don't need to continue with the inhaled Tobi so we get that hour of our day back. Unfortunately, the IV infusion takes about an hour and we do that 3 times a day. So we net out at an extra 2 hours of treatments added to our day. The schedule we're currently working on is 6am, 2pm and 10pm. We picked those times because the girls are asleep then, and it just makes it easier to sit with him and get it done without trying to manage them as well. Unfortunately, this means waking him up at 10 to get hooked up. He did fine last night and thankfully is a pretty laid back kid, so hopefully he can just go with the flow.
When I was at the Research Symposium for CF last week, Dr. Clancy started out his presentation acknowledging the time constraints that are put on parents when they have a child with CF. Drew is on a lot of medication now, but as kids get older they tend to get put on even more (of course depending on their health). As kids get older, more and more is added to their social schedules, as well as to their medical care, and nothing ever really gets taken away. You simply can't add more hours to a day. And part of his focus is finding ways to administer the much needed drugs and therapies that these kids need in a more efficient way. I totally appreciated his acknowledgement of that, because many people don't.
I remember talking with Help Me Grow about how Lily was sitting before Drew, and then how Lily was crawling before Drew, and now how Lily is walking before Drew, and the coordinator said to me that it wasn't surprising because Drew is stuck sitting in front of the TV hooked up to his Vest and breathing equipment 2-3 hours a day, while Lily is free to do as she chooses. They weren't at all concerned with his development, just not surprised that he was a step behind Lily in physical achievements. She had a great point. A few weeks later, when Drew got put on Tobi for the first time and they recommended increasing our airway clearance to 3 times a day, I voiced my concern that all of this time we spend on him in a day was causing delays. Our schedule, for a long while, went something like this: 7am-Wake up. Breathing treatments and airway clearance until about 8:30. Breakfast. Play for 45 minutes. Nap from 10-12. Lunch. Play for 45 minutes. Airway clearance and breathing treatments for 30-40 minutes. Nap from 2-4. Play from 4-6. Dinner. Breathing treatments and airway clearance from 6:30-8. Bedtime. That is a lot in a day. And it was me managing it while trying to keep a 2 year old entertained and another 1 yr old out of trouble. It was a lot, but it was what he needed so we made it work. Now we're adding IV. It is SO much better than being in the hospital, but its a lot! I miss our carefree days of going to the park with no end time in sight, trips for ice cream after dinner on a warm spring night, or an impromptu family outing to the zoo on a nice Saturday morning. They still happen, but everything has to be planned. If we leave the house while we have the PICC line, I must have our emergency PICC care kit with me. Its a central line, and if it breaks or gets pulled out or somehow otherwise compromised we could be in serious trouble. So we're going to just play it close to home for now, at least until we have a better grip on this new adventure.
I'm looking forward to a nice, long, relaxing Easter weekend. I'm taking pictures for some friends (remember this post about donating ALL SITTING FEES to our Great Strides Team), going to a wedding, and hopefully sitting my lazy butt on the couch while the grandparents play with my children. I hope the IV antibiotics get rid of Drew's pseudomonas and I also hope that everyone reading this has a wonderful Easter!
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