Grace went down to surgery around 11 yesterday morning, actually on time! I was a little nervous when she left cuz she started desatting and raising her heartrate and, it's the anesthesia team that transports her, none of which know her. So even though I know they are qualified professionals, I always like when someone who knows her is around. She made it down just fine though and about 2 hours after she went down, Dr. E called up to the waiting room to tell me he had gotten the Broviac and PICC placed and that she was doing well and no issues and they were going to start the Endoscopy. She got a double lumin PICC in her left leg and the Broviac is coming out of her chest, inserted into her subclavian. About 5 hours after she left, he came and told me that they were done. They put the scope down and discovered she had no Pyloric Stenosis and no obstruction and they attempted to place an NG tube that would go through her nose and bypass her . stomach into her intestine and he tried for an hour and a half to get it placed and it would not stay. Her stomach was very large and was a little malrotated. So he didn't want to do this, and I was hoping he wouldnt either but he reopened her repair site. The entire thing to move her stomach around and place a G-J tube. I really really didn't want her to end up with one, but had thought I was ok with it if she had to have it, since she does need to start feeding. But now that she has it, I don't know I just feel awful for some reason. I hate how it looks and I just feel like it cannot feel good for her and I just worry so much about it coming out, especially when she comes home. The way this tube works is that she has one large tube, about the size of a large drinking straw coming out of her abdomen with a large plastic ring at her skin. The tube then has 3 ports at the end of it and right now, a cannister as well. They said she shouldn't always have to have the cannister attached. But the large ports she will.So inside the large tube are two other tubes. One is placed into the Jejunem, its quite long. Through the stomach into the intestines, this is the port that she will eventually feed through and hopefully we wont have any of the issues with feeding that we did before, since her feeds will be bypassing the stomach. The G tube portion is in her stomach to try to help get the air out and anything that she takes by mouth for comfort and practice that she cannot move to her intestines on her own.
GJ tubes are usually pretty long term, some kids have them for years and years and yet some only have them for a few months. I am going to stay hopeful and prayerful that she can get it out in months and not years. I hope and pray that we can just give her stomach more of a rest and maybe it will function better when she is not on such high high sedation. In 6-8 weeks she has to go back to the OR to get a button placed for it, on the outside. In 6 months she will have to have them change it out. Please pray she can amaze everyone and not need it in 6 months. I realize those are pretty outlandish hopes in terms of GJ tubes but I'm going to stick with them.
She rested alright after surgery but her heartrate and blood pressure were a little elevated. She became hysterical around 8 pm and just did not stop. Her heartrate was about 215 and her blood pressure was 123 and she was desatting intot he 70's, a few times even lower. Heartrate is supposed to be about 120 for her, bp of 70 and sats should be no lower than 90 for her but her norm is 100. She continued this for hours, even after they tried sedation and position change and suction. She got a blood gas and it was not terrible, not as good as it had been but not bad. So they did a chest xray which showed she had a pneumothorax, or a collection of air or gas that collects in the lung cavity also considered a collapsed lung. It was her left lung which obviously doesn't do alot of work for her but it's still functional and was affecting her. So at 2 am she got yet another chest tube. Her 3rd one in less than 2 months. It's smaller at the site of insertion though since the other two were for fluids and this one is for air so I suppose that is a plus. Her heartrate immediately started slowing and her breathing slowed and she stopped retracting so much and satting better. But when they did the xray a few hours later they saw the insertion of the tube was a little higher than the start of the pneumo and they might need to do another chest tube lower down.
While in the waiting room during surgery I read this passage over and over.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal." 2 Cor
I felt so good about how her outcome was going to be, I felt great about the fact that even though all indications have always appeared that she wouldnt thrive, that she will. I felt like this would be the begining of upward progress that we would fly after this that maybe we would be able to work on the things we need to in order to get her home, or even close to home. After staying with her until 3:30 am, after watching her be in pain and upset again it's hard to not lose heart. I know, God is carrying her and I know beyond adoubt that His hands have not left her since she was born but I just wish she could stop suffering. It is so hard to see her be in pain, so hard to watch her cry and know there is nothing that will make her feel better. So hard to know that she has learned that people are mean and not good and that she associates touch with pain.
Please keep your prayers coming for Grace, pray that the pneumo goes away and she can get back to working on extubation and pray that she can start feeds and that all that will finally go smoothly and that when she is extubated she can actually learn to use her mouth the way she is supposed to. Pray that she can find comfort, pray that she knows how incredibly loved she is, by us and our families and friends and complete strangers, despite all the awful things she feels each day. Pray that her PPHN continues to be controlled, that it finally stops causing so much trouble and that they can get it so controlled that the can begin weaning her Flolan and get her completely weaned from the Nitric. She probably won't be weaned from Slindenafil when she starts it again but I've become ok with that. I've even become ok with her going home on Flolan, that is something that has been tossed around and one reason they wanted another Broviac. Pray that the g-j doesnt cause her any pain or discomfort. This girl has an amazing will and her strength is truly astounding. The thing about her, is that she really lives up to her name. She oozes grace, she does. When she is not uncomfortable or crying, when she is happy, she just makes you feel right, she makes you feel peaceful and she just shows love in an amaing way. I can't explain it really but I'm not the only one who's said it!