Broken Promises

Chapter 15 - Back Home From Florida

March 17, 2001

This was the first night we had a nurse for Saturday nights. Your mom had gone back to Florida with my sister to pick up the van. You started at about 4 am with a fever of 102.9. The room was rather warm, so I turned down the heater and gave you some Motrin. You were always very sensitive to environmental temperature. In about 45 minutes, you were back to normal. Your heart rate was up, but it came down. We kept you on 0.5 – 1 liters per minute oxygen. I kept you on oxygen all day Sunday. Your heart rate remained elevated, but you seemed okay overall.

Monday morning, you spiked a temperature of 103.6. The nurse and I decided to take you to the ER. You heart rate was still elevated, and you required constant oxygen. We didn't have a full tank of oxygen in the van or house. In the move back into the house, we had brought any empty tank instead of a full one. You were on an oxygen concentrator at home, so it wasn't a problem unless we had to take you out. I decided to have you taken to the hospital by ambulance. It was during morning rush hour. It took a few calls to get an ambulance service to bypass the local ER and take you straight to the children's hospital. The local ER was not well qualified to take care of you and really preferred you to bypass them if possible. They seemed unprepared every time we have taken you there before. It takes an hour or two for them to transport you to the children's hospital.

At the ER, they took a sputum sample to culture. They did not start you on an antibiotic until they were sure it was bacterial and not viral. I understand the desire to wait on antibiotics, but they have always treated you aggressively from the start. With your already fragile respiratory system, small things become critical fast.

The next day (Tuesday), we managed to get you to your pulmonologist to start you on a broad spectrum antibiotic pending the culture results. On Wednesday, your pediatrician called and said you cultured positive for Haemophilus influenza, staph, and an unknown gram-negative rod. I had him check with the pediatrician to make sure the antibiotic was the right choice for the Haemophilus, and we were told it was. The rest of the week, you did not improve and seemed to get worse as your breathing was more labored. We cancelled almost all of your therapy visits.

March 26, 2001

We made an appointment to see your pediatrician on Monday, March 26. The doctor took some blood cultures, gave you a shot of Rocephin, and changed your antibiotic to Augmentin. He said the Bactrim was not a good antibiotic for Haemophilus influenza. By the next day, your heart rate and oxygen saturation were back to normal. You continued to get better and regained a lot of strength throughout the week. The Saturday night nurse was surprised at the improvement in your health.

April 2, 2001

You were not showing any signs of sickness. Your heart rate and oxygen saturation were great. You had been very alert. Your antibiotic regimen ended on April 4th.

April 5, 2001

Thursday night at 10 pm, I took your temperature. It was 99.9. You often go up and down a degree or two especially if you were teething. We didn't think much of it, but I gave you some Motrin in case your teeth were hurting. Your heart rate was normal.

April 6, 2001

I put you to bed and watched TV. I had forgotten to change your diaper at 8 pm, so it had been on you for 6-8 hours. I thought it was odd that you did not have much urine in it. I gave you some extra water before I started your food. Your heart rate was in the 140-150 range, and your sats were in the low 90s. I gave you 0.5 lpm of oxygen to see if you would rest better. I gave your human growth hormone shot at about 12:30 am, and you were the same as earlier. Not happy, but you looked fine. Your skin temperature felt on the cool side of normal.