Monday 9/23/2013

An irritating day in the NICU. Friday I coordinated with the NP and radiology a time for the upper GI study, a time where I could be present. The therapist and NP didn't want to do it that day because a primary nurse wasn't working with Ava..but I said I didn't want to delay so that as long as I was there it should be fine. So I dropped the boys off at school and literally ran out to my car, drove to the hospital, and jogged into the hospital to get to the scheduled GI by noon. I got into radiology and they were doing an esophagram. I found out they had done the upper GI earlier that morning. I wasn't called about this change. I was NOT happy, NOT happy. On top of that the therapist I was expecting wasn't even there..it was some substitute that I had never met. No one in the room knew about Ava's bottle feeding, or rather, non-feeding ability. They told me that she aspirated during the upper GI study that afternoon. They had to squirt the contrast dye out of the bottle and into her mouth...because she wouldn't suck on the bottle..duh..she never has, why would she magically start now with this nasty tasting stuff. They asked "how much does she usually take?" " USUALLY?! Nothing! The most a therapist has been able to get her to take was 2mLs under perfect conditions, and that happened only once...with breastmilk-NOT contrast dye.".  Additionally, it really bothers me that all her bottle "practice" is in radiology with people squirting nasty contrast dye down her throat. If that doesn't create a worse oral aversion..I don't know what would.       She did not reflux in the GI study. I don't know why...perhaps if I were there, we could have better mimiced the conditions that cause her to reflux so that we could see how well she handles it under x-ray. I felt that the results from both the GI and the esophagram were pointless and useless. We wanted to know if she aspirates when she pukes..and we still have no idea. 

We came up from the esophagram and Ava was absolutely miserable. I couldn't calm her. She wouldn't take a pacifier. She would try to fall asleep and wake up in pain. It seemed like abdominal pain. We put a hot pack on her belly, finally I consented to an extra dose of morphine. The morphine worked and I went to pick up the boys. 

Today was William's special solo day with child life therapy. I scheduled him his own session without Sam, and at Ava's bedside. Of course I didn't know she would be miserable when we got there, nor did I think they'd be doing a SEPTIC WORK UP and STARTING AN IV when we got there either. Apparently in the 2 hours since I had left she spiked a temperature of 39 degrees Celsius (102.2F). So they ordered several labs, a blood culture, and a urine culture. It took the IV team three tries to get an IV. I called at 1am tonight and everything is negative. Of course we need 48 hours to confirm a negative blood culture and urine culture because that's how long it takes to grow bacteria. I have a theory that I want to look at harder tomorrow. I think she is reacting to the contrast dye from the study. Her demeanor changed so drastically from before the studies to after, that I don't think it can be ignored.       As a side note...I have made it clear AND it is written on the cardex that I wanted to be present for her next straight cath. Today was the THIRD one that I wasn't called or informed about until after the fact. The nurse could have waited the 15 minutes for me to get there. This makes me pretty angry. There are some serious communicaton issues. Because of her abnormal anatomy, I want to observe at least one urine collection (straight cath) so that I can explain to nurses how to do it if/when it needs to be done in Idaho Falls. 

The lasix (diuretic) has been reduced again. Today the potassium chloride was reduced as well. This I was happy about because I think that this med really bothers her stomach/intestines and I think she vomits worse when she gets it.      She was supposed to get 5mL of breastmilk every hour into the stomach with a second tube down the other nostril today..but that order was cancelled when she spiked the temperature. I predict that her temperature will be gone after 24 hours. 

I am very uncomfortable with the prospect of a NIssen surgery or the placement of an G-J tube. A Nissen is where the stomach is wrapped around the esophagus. This procedure is routinely done for babies with severe reflux but it is not ideal for babies like Ava who have poor motility in the fragile esophagus. The G-J tube is a feedings tube that goes directly into the small intestines. It is more complicated to place in surgery and can become dislodged later. We would have to be readmited to the hospital (at primary children's) to have it repaired if it were to become dislodged...and given that Ava has 3 young siblings and 2 dogs, I am not confident that it would stay perfectly placed. If it becomes dislodged it can cause a perforation and massive infection.     At this point in time I am suggesting that they let me take her home with a G-tube and an NJ tube and that I can titrate her feedings with her primary physician at home as she becomes stronger and can handle her severe reflux better. 

As a side note- I really like the nurse on today. She is not a primary nurse for Ava but has worked with her several times. I felt bad that she was on shift when I was so frustrated about so many things. It could have been any other non-primary nurse and the day would have gone the same way. 

 This is Ava right after William startled her awake. She is pale and sick in this photo.