We started our day at 6am. Hannah told me Dillon had been coughing and making frustrated sounds since 5am. He was arching his back and would not stop "complaining" so I told her to put him on his belly. (We had him sleep on his back because of his tube site) As soon as we put him on his stomach he did not cough again and he held his head up for 10 minutes. He was complaining that he made him sleep on his back!! :-)
Dillon, JayDonn, Hannah, Barb and I pulled away from the house around 7:10am. We arrived at our appointment in King of Prussia. The ENT looked in Dillon's ears. He said he did not see a perforation in the left ear anymore, however there was fluid behind his ears. The right ear has wax and fluid. The doctor suctioned his left ear and pulled out a ball of wax/blood that was the size of a pearl! Inside that ball was Dillon's tube. The right ear still has the tube but it is not in the right location to do its job. August 28 we will have an appointment for discussing anesthesia and September 15 he will get tube placed again.
The next appointment was in Paoli and we were two hours early for it. Dr. Gelman was able to fit us in an hour early. JayDonn was given three shots and had his hemoglobin checked. Dillon and JayDonn have both grown in height and weight. I don't have the exact numbers in front of me but Dillon is about 24 pounds and 32 inches and JayDonn is a little less than 20 pounds and 28 inches.
We then went to Wendy's and sat there for a while while we had lunch. After having a frosty we left to find the next appointment in Exton. After realizing that we were going the wrong way on 30, we found the other CHOP satellite. We were still about an hour and a half early so we sat in the waiting room. Jay had a great time playing with their toys. When it was our turn, we took Dillon back and saw the nurse practitioner. She said that Dillon's site has bad yeast, which is why is it so red. I thought this was due to the stomach acid, but it isn't. Maybe that is why the Malox is not helping it! She wants me to put an anti-fungal cream on him 4 times a day for 5 days AFTER it is no longer red. Her guess is that this will take 2-3 weeks since it is so bad. She said in her experience cauterizing the granule tissue helps 82% of the time, where as a simple cream help 68% of the time. This cream will take about 2-3 weeks to work, if it will work. We decided not to cauterize the site right now, I did not want to put him through all that pain when it wasn't even a promised outcome. Her conclusion is that burning the kids is not usually worth it unless the cream doesn't help, if it is bleeding or if the child is in a lot of pain.
The nurse also said Dillon's tube is too short. He still has the same size tube from when he was born. She measured how long it should be and increased his size. Dillon had been using a 14 French 1.0 cm, he how has 14 French 2.0 cm. This means the distance between the top of the balloon and the outside tube is a centimeter longer. When the tube is too short if forces the balloon to rub on the inside of the stomach lining and wear it down.
We got home around 4p.m. this evening. It was a long day! Since Hannah was up with him last night so much she took Jay up to his bed and she also took a nap. We had to wake Jay up at 8 and he was back in bed by 9:45. The poor baby was so tired since we got him up so early. Dillon has been resting so well tonight.
I washed Dillon's tube with soap and water and put the cream on it. Then after several hours we took the 2x2 off and let it air out for several hours. It is already looking better! Tonight I washed it with soap and water again then put the anti-fungal cream again for him to sleep on it tonight. We are taking great care to make sure we don't spread the yeast (Jay has a small yeast diaper rash). We are using gloves to change Jay's diapers, to wash and clean Dillon's tube, to hook him up for feeds, or anything else near his tube.
Praise the Lord we didn't have to cauterize his tube today! I would have felt horrible making him go through all that pain! His tubes won't be until September, please pray he won't have any more ear infections while we wait for that day to come. By the way it should be same day surgery, they do not think he will need to spend the night in the hospital!!