Passed the radionuclide salivagram

Wyatt passed the radionuclide salivagram test. This is important because if he did not the doctors would have once again suspected he has a neurological problem and ordered an MRI. For the saliva study, they put a small amount of radioactive material on or near the tongue. Then they wait a couple of hours and take x-rays to see where the material ends up. If he anything showed up in his lungs that would mean he is not protecting his lungs. On a side note, apparently some of the material got on his onesie so they had to remove it and dispose of it. His diapers will also have to be disposed of carefully.

We found out about the MRI at the family conference today. My stomach sank when I heard about neurological issues again. Rus sensed this, of course, and asked if this was the case why hadn't this happened earlier. That made me feel better, at least for a while. And I managed not to become hysterical. A major feat in and of itself. Next they will do a test called a milk scan (They put radioactive dye in his bottle and image him while he drinks from his bottle. Not sure how it's different than barium swallow study at this point.), but I think that they will have to wait until OT (Amelia) is back on Tuesday.

Back to the family conference, we talked about discharge a bit. Apria, the DME provider, would likely deliver everything to our house once a week for the oxygen. They will give us classes, have us apply for a handicapped placard if he goes home on oxygen, and refer us to a pediatrician in the High Risk Infant Clinic. They assured us that we would not take him home if we did not feel comfortable.

I told them that I am nervous taking him home given the issues lately with the cyst and pneumonia. I feel like horrible things are going to keep happening. I know that they can't screen him for everything, but I am worried about that. The doctors and cranio-facial nurse were all very complementary about how in tune we are with Wyatt. Dr. Jennis actually mentioned how I reported Wyatt's breathing was funny the night before they had ENT come. They think that we can handle it.

Dr. Jennis also mentioned the possibility that Wyatt might come back to the hospital and might have other surgeries. He said we might want to tour the Pediatric Intensive Care Unit (PICU) and they can set that up.

I also said I was worried about feeding Wyatt and that I felt that maybe we pushed him too hard. Dr. Alexander said she also worried we pushed him to hard. She said that we should just let him eat what he wants, when he stops we gavage. I admit I am a little scared to feed him. Peg said I shouldn't be because my instincts were correct. We had talked last Wednesday and I had expressed my concern that we were force feeding Wyatt. Peg is a firm believer in making feeding pleasurable. She said that cranio-facial would definitely work with us in the outpatient clinic with his feeding.

I brought up the vaccinations again. Dr. Alexander reiterated what Dr. Shay had said yesterday and said that it is even more important that Wyatt is vaccinated. In fact, the discharge nurse said that we should get vaccinated for Pertussis. Glynn asked if he and Patricia should be vaccinated as well and she said yes. So, we signed the consent to have Wyatt vaccinated. If he is going to be vaccinated better to have him vaccinated while he is still in NICU being monitored.

We talked about lack of continuity of care with nursing and how in the last six days Wyatt has had a slew of new nurses. I said we don't think anyone is being negligent or anything like that. It is just extremely stressful and we think we would have been taken more seriously about his coughing and wet breathing had there been continuity. The head of NICU nurses was there. She said she will do something about it. We will see.

We also talked about him coming home on oxygen, although Dr. Alexander is still hopeful that might not be necessary. If he does (or doesn't most likely), we will follow up with Dr. Shay. To get Wyatt off of oxygen we will have to stay overnight in the hospital so he can be monitored.

They also offered to have us stay in NICU with Wyatt overnight if that would help us feel more comfortable. Yuck. I am still getting over the trauma of the 5th floor.

Glynn and Patricia came to this family conference. We like to put the family in family conference. I love having grandparent support. And the nurse manager said that they would be happy to train grandparents in Wyatt's care as well.

We decided to take the evening off. We realized yesterday that all we do is go to the hospital, eat, I watch TV, Rus is on the computer and we mostly don't deal with each other. It's bizarre. We aren't upset with each other or mad. We are exhausted by this experience so much of the time that we can't really process much else. So tonight, we are going to go out to dinner.