It’s been really crazy the past 2 weeks. Thankfully my husband was able to update everyone with my limited internet access with what happened with John’s sleep study.
Joseph and Alexander had their first day of Pre-K and 3rd grade on August 25th. Thomas and I took them to school. Joseph was very excited to start school. Alexander seemed to be happy as well.
Joseph has a pre-op surgery appointment on September 18th to discuss removing his tonsils.
Now on to John’s appointments….
GI Appointment on August 25th:
Dr. Rampshad changed John’s feeds. He’s is now taking 4 oz at 9a, 12p, 3p, 6p. He also went from 12 hrs (8p-8a) continuous feeds at night to 10 hrs (9p-7a). He wants us to hold off on baby food for another 2 months, but he did say we could try rice cereal mixed with 1 oz of formula divided up between his 4 feeds. John weighed 12lbs 5oz at the appointment.
6 months Appt 8/26:
John weighed 12lbs 6oz and was 25in long. He took his shots like a champ. Dr. Meyer said we could feed him as early as 1hr before his feeds. So really he can eat as soon as 8a, 11a, 2p, 5p. She did say we could offer John 2oz around 8p if he was awake and wanted it. If for some reason he didn’t finish it then the remaining will not go through the button. It is just what he will take from the bottle.
Sleep Study/Hospital Stay 8/26-2/29:
John and I were at Texas Children’s in Houston for his sleep study by 6pm. John slept fairly well during the test considering he had his shots earlier in the morning. After the sleep study I was told we needed to stay until the doctor had spoken with me. It took awhile. In the mean time John started vomiting his feed. I had to ask to use the suction machine to remove milk from his nose. They actually had to “code” him, even though it wasn’t severe.
I was informed we would be admitted to the PICU due to the amount of apnea events. After being admitted I finally discovered he had over 400 apnea events with 5 different types. The doctors weren’t comfortable with him leaving after having so many events. After talking with his regular ENT and Pulmonologist and the ones at the hospital it was concluded if we needed to be transferred to McLane Children’s in Temple we would, but hopefully Texas Children’s could handle the sleep study with a CPAP. Dr. Powitzky, John’s regular ENT said if any procedure was to be performed, then he wanted to be the one to do so. On Thursday the 28th, we had another sleep study in the PICU with a CPAP to test his response. They determined a level 6 on the machine was good for him. I was informed that was high for a child his age though. Luckily, on Friday night we were able to have CPAP delivered to the hospital and we were able to go him. If we hadn’t received it then he would have had to stay past Labor Day.
ECI Occupational Therapy 9/2:
John had his OT appointment with ECI (He gets OT 2 x a month). She was impressed with his improved head control. She wanted us to work more on his hands by grasping items. He can grasp, but it can be difficult with his curved fingers.
ECI Nutritionist 9/3:
The nutritionist came by for her monthly appointment. She was impressed with his 1lb weight gain since she had seen him last month.
ECI Physical Therapy 9/4:
The physical therapist came for her visit this week (she comes 4x a month). She used an exercise ball to help with his tummy time. He’s not a real fan of it. She wants us to hold and lay him stomach-side down on the exercise ball and rotate him around to the song of “Wheels on the Bus”. She also showed us another way to carry him which can help strengthen his muscles. He lays with my arm around his chest while my other arm is around his legs holding him out about a 45 degree angle.
Temple Appointments 9/5:
We saw Dr. Chavez which is his normal pulmonologist. He agreed that the level for his CPAP was high. She suggested a tracheostomy and then reviewed the pros and cons of the procedure and why a long term CPAP should be ruled out. Her biggest fear was that longterm use of a CPAP at his age could cause his facial bones to become deformed. It has a lot to do with the pressure of the CPAP against his face. She wanted to wait until we spoke with the ENT later before we made any decisions.
Dr. Powitzky, his ENT agreed with Dr. Chavez on the opinion of a tracheostomy. He recommended to perform the procedure no later than 3 months from now. Obviously sooner would be better. So now John has an appointment with a trach specialist on the 16th in Temple to make sure we don’t have any questions and to show us the various types. On the 23rd John has a pre-op appointment with his pediatrician. Then on the 30th is his surgery. When the procedure is finished, he’ll be in the PICU for at least a week to recover. From there it really depends on how fast we learn, feel comfortable, and “pass the test” of taking care of him with his trach.
Please pray for us since the next 2 months will be a real learning curve and stressful with all that will be going on.