This morning the substitute surgeon came in and said we are all set to have the operation to put in a Central Line on Monday. They finally explained the procedure to me and it is a legitimate surgery. He would need to be put under and go back on the ventilator. Until then, I did not realize it was a real surgery. I thought it was more like the chest tube where they just put it in and its not a big deal. Now I understand why they didn't want to do it over the weekend. I wish they would have explained it better up front so I wouldn't have been frustrated yesterday about them not getting it done over the weekend. Now we basically have to make a decision between these two choices:
- Have the central line put in and stop all feedings through the stomach for at least a week. Then slowly resume feeding over another week.
- Downside: Leo has to undergo another surgery and get put on a ventilator. This could compromise the excellent breathing he has been doing on his own over the past 2+ days. He is also likely to feel hunger pains for the entire week and we are guaranteed a minimum of 2 more weeks in the NICU.
- Positive: Not feeding for a week provides a high likelihood of stopping chylothorax. It also gives the G-tube more time to heal from its random leaking.
- Continue to do continuous pump feeds of fat free formula through the G-Tube. Pray both the chylo and G-Tube leaks seal.
- Downside: This may not cure the chylo and we could still end up doing option #1.
- Positive: This may save Leo from having the Central Line surgery, not eating and get us all home sooner. Also, when Leo had his 2nd go around with chylo after we thought it was cured, we never stopped feeding him and it seemed to heal until the breast milk so we do have some track record of stopping the drainage while eating.
Our initial decision is #2. We are keeping the feeds up overnight and hoping for no fluid. I really don't want to comprise his breathing with going back on the vent or else my pick would probably be #1. Most people know I don't really like to make decisions even when they are really simple like where to eat or what time to get together. Making decisions about my baby's life is just so hard especially when different doctors say different things. :(
While I'm complaining.....I would like to voice my frustration with missing Leo's doctors. We have been blessed with 2 excellent residents. Our current resident is gone the 20th-30th. She works her butt off and I'm happy she gets time off, but we miss her. While she is gone, a different nurse practitioner fills in everyday. They check on Leo 1st thing every morning and then report all the info to the Neonatologist. We've only had this set-up for 2 days so far and each morning I have to give them his life history it feels like and then be on my toes during rounds to correct misinformation and fill in the gaps. It makes me scared for one of us not to be here. I'm having the same issue with Leo's surgeon being gone. The substitutes just don't know his history or seem to care about him like our normal doctor so it is hard to trust them. :(
On a happier note, I'm super thankful for three of our primary nurses. They treat us so well and really care about Leo. Like I said, Friday was Santa Day and Terry spent the night Thursday and had to leave early for work. I didn't arrive until 8:30am due to crappy weather and a 2yo that is hard to say goodbye to. I was scared I was going to miss pictures starting at 9:00, but wasn't too worried because I figured Leo couldn't wear clothes with his chest tube. When I walked in, his fabulous nurses had gone in my drawer, found his Santa outfit, got him dressed despite the fact that the clothes made it harder for the nurses to do their jobs and they started taking pictures of themselves with him. It warms my heart to know they care about him. Here are some more pics from the day.... Check out that tape free little face!!
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