Surgery scheduled

Yesterday after many calls and much pestering we finally got Teryn down to radiology to have her ND put back in so she can eat. It was not a very easy procedure. I watched the screen as they spent over half an hour trying to get it in the correct place. Every time it got to the pyloric opening it would just curl back up into her stomach. They finally got it right on the cusp and decided that was the best they were going to be able to do.

She also lost her IV the previous night and they were unsuccessful in getting another one in. So, we had no way of giving her any type of fluids...again. They decided to go ahead and restart her feeds at half the amount in hopes that the flow and the contractions of her stomach muscles would move the tube into place.

This morning I came in and sweet girl was awake. I was talking to her and as I watched her eyes, mouth movements, and decreasing oxygen saturation I knew exactly what was about to happen. Seconds later she began refluxing her feeds. I found her nurse and asked if anyone had seen any reflux. They said no and I explained that she definitely was now. I wanted to reach over and turn the pump off myself because I knew that the drs would say to stop the feeds and I did not want her to keep choking and possibly aspirate. As soon as the doctor came in she turned off the feeds and hunted down one of the IV team. The sweet doctor, I know she is almost as frustrated as I am. She had tears in her eyes as she was apologizing to me that we were once again unsuccessful at being able to safely give Teryn food.

The IV tech who came was someone who has been very successful in the past. I was glad to see her. She was able to get a line in on the first stick with Teryn barely noticing. She and I agreed that if Teryn happens to need another peripheral line then we are hunting her down. We decided that we are going to attempt to get a central line in that can stay in place much much longer. This way we can give her the full amount of fluids she needs and she will already have a line for the surgery. Someone should be able to come and do the central line today.

The g/j tube surgery has been scheduled for Friday. We do not have a time yet but since she is so small, chances are she will be one of the first that morning. Please remember to keep Teryn and the doctors in your prayers. Once this procedure is done then we will be very close to coming home.

Teryn has been losing weight over the past few days and I can tell that she has been stressed. She gets hiccups a lot and has a very hard time resting. Today she has been desatting a lot when she is trying to fall asleep. This is something she does when she is too tired to fall asleep. I was a little aggravated that I had to ask the nurse more than once to turn her 02 up when her alarm kept sounding because her oxygen saturation was falling to the 50s and 60s and I had to keep stimulating her to breathe. She was in that state where she gets so tired she can't get over the hill to fall asleep without a little help with air. Luckily she finally fell asleep and has been resting a while. I was so worried when the infectious disease doctor came in and wanted to see her tube site. i was afraid she would wake up and we would have to start all over again. Thankfully she slept right through us moving her and even changing her diaper. The ID doctor said her site looks a little irritated from the leaking of her feeds and gastric juices but no infection.

So that is the news for now. James will be coming this weekend and the plan is for him to stay this time until we go home. Tomorrow marks 7 weeks for being at MCH and today Teryn is 13 weeks old. She had her 3 month birthday on Sunday. We are definitely ready for her to celebrate every other milestone at home.