Thursday was our monthly Pulmonologist and GI doctor appointments. They decided to make some changes and wean some medications too. This is exciting because it means that Elias is becoming much more stable with his breathing and chronic lung disease. The Flovent is decreased from 4 puffs two times a day to 2 puffs twice a day. The Atrovent inhaler has been discontinued and we are changing the way we administer the Albuterol & Flovent. Elias has become a bit combative with the ambu bag and spacer over the trach method. As he has learned to use his hands more he would start to reach up and attempt to rip the connection on the trach. He just really did not like the pressure of bagging the meds into his airway, and I can hardly blame him. So we are using a Optichamber which is a device children with asthma us to help ensure the medicine penetrates into the airway and lungs and not get stuck in the mouth. Obviously with Elias' trach we can not do that, but he breathes in deep enough now through the trach to pull the medicine in. He is still a little leary of it since it slips over his trach, but since it is not as tight a fit he is starting to realize that this is more comfortable. The secretions are still very active and significant in volume, but as we keep saying that is starting to become a more accepted baseline rather than an issue to monitor, at least for now.
With the improvement and him not working as hard to breathe, they also lowered his calories for his food. They had him on a much higher than normal calorie diet to compensate for the labored breathing, which burns more calories. He has hit the 14 lbs mark also and is 23 3/4 inches long. They had us put blue dye in his feeds yesterday just to ensure that there was not anymore aspiration of the food. It was fun to see smurf blue colored formula turned to navy blue stool in the colostomy bag. I think it freaked his nurse out a little last night. Fortunately, we found no blue coloring in the trach or secretions which means the Nissen is working as it should.
Elias has a fourth tooth about ready to break and the two front teeth are really coming in fast. You can kind of see them when he smiles now, but he just will not give us a good smile for the camera to get a picture of them. He has also discovered the teddy bear that daddy bought for him. It has been by his side since the day he was born, but it was too big to play with. They are about the same size now, Elias is a touch bigger, but he loves to play with the bear's nightcap and chew on the nose. He was also really developed at going after toys and reaching for them, in his own special way of course, but it is impressive to see him reach and grab something that he is eyeing.
The next couple of weeks are going to be quite in terms of scheduling. We have a quick visit to the pediatrician for some immunizations, but otherwise we do not have anything for two weeks when we go back to Hematology for his semi-annual FA blood count checks. Elias gets the week off from therapy because of spring break so it will be up to us to keep him going. Then it will be the home stretch for Elias first birthday! Wow very hard to believe that it has almost been a year, but at the same time, with all that has occurred, it also seems like forever ago.