I don’t want to jinx it but Lily is scheduled to have surgery to close the still open stoma from her trach next week. This will be the third attempt at this surgery since she got sick the previous two times so maybe 3 is the magic number. The trach came out last July but the hole has remained. It has been the size of a pencil eraser for months and she still uses it, at least partially, for an airway. She had pneumonia last month and I was able to give her oxygen and nebulizer treatments through her stoma so it isn’t all bad. She has two airways and two ways of feeding her since she still has a g-button as well.

The g-button is still necessary because when she is sick, she won’t eat and she gets supplementary feedings. She is in the third percentile on the weight growth chart and slowly gains weight but quickly loses it (I wish I had this problem). We also use it to give her medicine which is hella useful. There have been times, while wrestling one of the boys in an attempt to give him antibiotics, that I wished all kids had an extra stomach route.

The last time we were in the hospital, I asked about removing the g-tube but her doc pointed out we’re still using it. He said it will become apparent when we don’t need it anymore like it did with the trach. I really like her doctor and walk away from our conversations feeling like I just met with an extra great professor after class. He has been with us through many hospitalizations and I trust him. The g-button stays for now but we would like to close the hole in her neck hence next week’s surgery.

One of Lily’s nurses has become like family. She’s an integral part of our lives and keeping Lil out of the hospital. At night, she gives her feedings, neb treatments and watches the pulse-ox machine. Last night, she brought Lil a picture frame with a music box on the back. I just realized it plays, “I Love You Baby” which is just about the best thing ever (except Mike just pointed out music boxes sound increasingly sad/creepy sounding as they wind down. He’s right).

If Lil’s surgery goes well, she will probably lose most of her nursing hours which will be an adjustment. We’ve had nurses here for four years. The winter olympics actually marked Lily’s four year anniversary of coming home from the NICU. We’ve had nurses here for the same length of time I was in high school -fighting urge to insert graduation metaphor- so her loss is going to take getting used to for all of us.
Regardless of what happens with her nursing hours, we are looking forward to Lily’s neck being hole free. She wants to lay down in the bathtub and take swimming lessons but she can’t do either until her neck has healed. Hopefully we will be on track to be ready for swimming when summer begins. I can’t wait.

This entry was posted on Tuesday, March 9th, 2010 at 10:30 am and is filed under Triplets, Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.