October 28th, 2014 – Life has been busy as always since we came home from the hospital. We’re still adjusting to everything, but overall it has gotten much easier over time.

We had a follow-up appointment from our hospital discharge on October 23rd with Dr. Meyers, his pediatrician. John weighed 14lbs 10oz. I had discussed with the doctor about his refusal to take a bottle. Before the trach John would easily take 2 or more ounces. Ever since the trach surgery we’re lucky to get 1oz. He’s now on the g-button pump all day to make up for the loss of ounces. Dr. Meyers is setting up a referral for him to meet with a Speech Therapist at least two times a week to put him back on the track with taking a bottle.

While taking his 8 month photos on the 24th I noticed his g-button balloon had burst. I had to perform an emergency g-button change. Since I had no back up g-buttons, I called his doctor in Temple who said to come in. An hour and a half drive followed by about 10 minutes of placing his new button, followed by another hour and a half drive made up our day.

Over the weekend he developed a fever. I was unsure if it was him still teething or if he may have caught something. He stayed home from church along with Thomas and I since we didn’t feel well either.

Today I took him to his pediatrician since he had a temp of over 101. The doctor said his throat looked really red, so she ordered a strep test. At the same time she ordered a chest x-ray. It turns out John has developed the early stages of pneumonia.

It’s no fun when your child is sick. No matter their age, it’s always hard on the parents.

Finally, tonight a temporary night nurse will be helping look after John so Thomas and myself can get some sleep. We had to move his bed into the living room. I mean would you really want a nurse coming into your room?


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