Mic-Key Button & RSV

  On November 8th, about ten weeks after her G-tube revision surgery, which took place at the end of August, Emma was finally able to get a Mic-Key button put in! I am glad that Michael really wanted the Mic-Key button compared to a regular one like she had before August because the Mic-Key is working out really well for us. We were happy that we did not have to have another office appointment to measure the thickness of her stomach wall and that they were able to do that when we got to our ER appointment at Arnold Palmer Hospital. Since it was a scheduled appointment, we did not have to wait in the lobby and they took her straight back to get her weighed.

   Dr. Morgan's assistant, Emily, was there to talk to us and then a different doctor (who looked a little bit like Leonardo DiCaprio) was the one who did everything with putting the Mic-Key button in since Dr Morgan was still busy in surgery. I didn't care who did it as long as it got done and we got to go home! I was happy that we were there for only an hour. "Dr. DiCaprio" (I don't remember his name) pulled out Emma's yellow G-tube tail -- you can see it coming out the side of her shirt in the first photo. It's basically the tube used to hold the stoma open and be used for feedings between the surgery and getting the "real" G-tube/ Mic-Key button put in. He pulled that out which understandably made her cry, as he was pulling a stopper out of a hole that was smaller than the size of the stopper.
   Then he had to put in the tube that let him know how thick her stomach wall is -- and she's got to have some strong abs with all the leg kicks and exercises she does every day! That made her cry too, but she was fine shortly after the Mic-Key button was put in and the balloon inside was filled with water so it would not come out of the stoma. He suggested that we deflate and re-inflate the balloon every week or so to make sure it has the necessary amount of water (5ml) so the button does not come out. We have not had any issues with that. Yay!

 Here are some close up pictures of the G-tube attachment piece, which we really like. Dr Morgan told us that a Mic-Key button is a good idea for people who like having lots of doctor appointments, but maybe that's because if it pops out, other parents don't know how to get it back in, but Michael and I have dealt with that plenty of times between May and August when she got the new stoma. We like this one because it can come undone, leaving only the button for photos without "a tail". And also because with it coming out, we can clean the tubing every day with hot water when we change out her formula bag. When the yellow "tail" tubing was attached before there was no way to clean it since it was stuck inside her stomach. So yes, the Mic-Key button is working well for us and there have been no issues so far! Hers is a size 1.5cm, 14 French.

   For the RSV info part of the post: RSV (Respiratory Syncytial Virus) is a shot that Emma, and other babies/kids with trachs, ventilators, and lung problems, have to get during the winter months (between October and February). This has to be done with the Pulmonologist -- it cannot be done at the Pediatrician, so that was another doctor we have to see every month. However, the past two months we also saw the Occupational Therapist on the same day since their offices are very close to each other.
   The appointment takes about an hour because they always have to weigh her to make sure she gets the correct dose of Synagis. The dosage is 15ml per kilogram and on our appointment last week she weighed 6.76 kilos (14 pounds, 14 oz) which equaled 100ml of the medicine. The syringe holds 100ml, so the nurse said once Emma reaches 15 pounds -- probably by the end of next month -- they will need two nurses to give her a shot in each leg at the same time for the appropriate dose. Before getting the shot they take her temperature and then check it again 20 minutes after she gets the shot. It is common for kids to spike a fever from it, but Emma has not had a problem with it. Her temperature is almost always between 97.2 and 97.9.

Look at those beautiful curls!!

   At our appointment last week we had to schedule it with a different doctor since Dr. Garcia was not available, but he (Dr Sabogal) was still someone we knew from the NICU. I really liked seeing him because after he listened to her lungs and looked at her ventilator settings, he turned her Pressure Control down from 24 to 22!! Yay, lower vent settings! That is the amount of air it gives her with each breath/puff, and he was able to see that she was not needing it to be at 24. I was not planning on her settings getting lowered until January at the earliest, so I am very excited about that. She has not seemed to be doing any differently, so having a Pressure Control of 22 is not affecting her in a bad way. Maybe he will be able to turn it down again by two more next month too?! Except the next appointment is with a Nurse Practitioner since a lot of the doctors are off after Christmas and I don't know if she will be allowed to turn it down. We'll see! :)