Gabriel’s breathing has taken a beating this week. His lungs are becoming more wet, he’s requiring more oxygen, more support, his whole body is working hard, and he’s burning a lot of calories just to breath.
On Tuesday, the doctor told me that she “thinks we’re barreling towards a G-tube”. A G-tube (gastrostomy tube) is a feeding tube that is placed in the stomach for babies who can’t (for whatever reason) feed by mouth. It isn’t safe to feed Gabriel by mouth because of his respiratory status. He is refluxing (almost like heart burn) and aspirating (getting into his lungs). So to help him stop refluxing and aspirating there is another procedure called a nissen fundoplication that basically pulls the upper part of the stomach up and wraps it around the bottom of the esophagus to strengthen that muscle so Gabriel won’t be able to reflux, thus not be able to aspirate (which will help his lungs).
Wednesday came around and his doctor consulted with the surgeon who did both his duodenal atresia repair and his Broviac line surgeries and he scheduled surgery for tomorrow. Gabriel will have his third surgery: a G-tube and a nissen. The hope is that once he heals from these surgeries then all we need to work on is his respiratory system. His doctor is convinced that he’ll need to be on oxygen to come home. I’m ok with that. It’s better for Gabriel to be home (even if it’s with a feeding tube and oxygen) than to be in the NICU. I’m worried though that if the nissen doesn’t help his lungs, then it’s something else that has been making his lungs wet…his heart.
Surgery itself should be a breeze, but it’s the recovery and Gabe’s lungs that have me holding my breath. He “shouldn’t” react the same way he did with his duodenal atresia repair, but then again he shouldn’t have reacted as bad as he did that time either. As far as his lungs go, he has to be intubated and put on a ventilator for surgery and then work himself down from the vent to CPAP to the nigh flow nasal cannula, which is what he’s on now (4 L, about 28% oxygen). Gabriel was put on three nebulized breathing medications on maximum doses this week because of how sick his lungs are. The only “big gun” the doctor is saving for post-surgery is a round of steroids. He can’t come home on any more than .3 L flow on the nasal cannula… he’s on 4 L right now. If the treatments and steroids don’t help him get down far enough on the cannula to go home, then we have to talk about a tracheostomy. At this point, if Gabriel needs a trach to come home, then he needs a trach to come home. I’m praying this doesn’t go that far and that after this surgery his lungs will heal and he can come home by Christmas. Selfish or not, that’s what I want. I want to spend Christmas with my baby at home…but I’d rather spend it with him in the NICU than not be able to spend it with him at all.
I had “stressed” written in Sharpie on my face earlier this week. Now, I’m feeling ok. I gave Gabriel a slow tub bath and cuddled with him all day. I just want this surgery to be over with. Let’s get beyond the first 48 hours and then we’ll see how things are going…