No More Tubie!

After 8 1/2 months, Maggie is now tubie-free! Maggie began TPN the first of November and has had something hanging from her body (and often trailing her) since then. We went to the GI doctor yesterday and he said, "How do you feel about getting rid of this thing (the NG tube)?" Of course, I was squealing inside, but also had a few nerves because now it means Maggie is responsible for everything going into her body. This is something she has had very limited experience with.

Maggie's weight has remained fairly consistent, with it being a little on the low end right now, but yet within reason (13.2 kg). Dr. Mezoff (her GI doctor) feels that she is at the perfect place to try to sustain her own being that she has some weight she could lose and still be okay, though of course we do not want that. I asked about beginning an appetite stimulant, but he doesn't like to add medicines if he doesn't have to. He wants to see how Maggie will do on her own and he believes she will be successful.

The other tubie that we have gotten rid of is Maggie's pulse ox (her oxygen saturation reader). She had a pulse oximetry test last Tuesday night that recorded her oxygen saturations. The pulmonologist wanted to see what Maggie did at night to determine whether she needed further studies (a sleep study) or oxygen at night. Though Maggie continues to de-sat, it was determined that she brings herself back up into the appropriate range and does not need further oxygen, studies, or continued readings. So, we packed up the machine and stored it away hoping never to use it again. We would like to get rid of all of our oxygen equipment, but the doctor wants us to keep it until Maggie has her first respiratory illness. Having the equipment for such an occasion will make me feel more comfortable as I can read Maggie's oxygen levels. Hopefully though, we will not need to worry about it becoming severe and needing further assistance.

So, it has been a wonderful 2 days in our house as Maggie no longer needs to worry about being wrapped up in her tubes as she rolls around in her sleep, and we are very happy to not have to mix up formula. Our new challenge is giving Maggie her medicines, but hopefully she will grow accustomed to taking them again. We welcome this new challenge as we know what it now means--being tubie free!

No more tubies for me!