Caden was scheduled for back surgery tomorrow morning. We cancelled the surgery due to Caden being sick. He was diagnosed with pneumonia last Monday August 15th and was actually on the mend until Wednesday of this week.  He had gotten to the point over the weekend where he could be without oxygen during the day with his SATS holding as high as 96-98 at times. Then this morning he got up with a fever, was not tolerating his tube feeding, and required oxygen all the way through the morning. Sherry and I agreed that there was no way we could even entertain surgery with him in this condition. Since Caden was on his 9th day of antibiotic the new symptoms warranted a trip back to the pediatrician. We expected to possibly get a chest xray and maybe go back to Rocephin injections for a few days. Instead Caden’s pediatrician said he thought it would be best to have Caden admitted.
It was not like this instance of pneumonia was/is more serious than the last. The rational for admitting Caden was more of a conservative approach to treating this incidence of pneumonia. We have certainly cared for Caden at home when he was in worse shape before. Caden’s rapid return to symptoms combined with the fact he was already on a pretty good antibiotic caused the doctor to consider the hospitalization. We were also facing a slim possibility of a hurricane strick on the South Carolina coast from Irene. This added concern that if we had to evacuate we could find ourselves in a very complex position trying to get Rocephin injections from a hospital or doctor that did not know Caden. Even staying in the area would likely cause us to get daily Rocephin shots through the weekend to get Caden turned in the right direction. The hurricane had a very high likelihood of missing SC all together. We may still get some heavy thunderstorms from rain bands, but the brunt of the hurricane will remain at sea until it is well past SC. Sherry called me at work and had the doctor talk things out with me and we all agreed that hospitalization might be the best choice this time.
At MUSC Children’s Hospital
So Sherry took Caden down to the ER and they agreed he needed to be admitted. This is always an adventure for us because we rarely get the same doctors and only occasionally get a familiar nurse for more than a night or two. Most of the doctors running the show on nights and weekends are residents. God bless them, but way too many are quite full of themselves. This visit has been no exception so far. I have already had the senior resident for the night come in and tell me how things were going to roll and she did not seem very happy with me asking hard questions. My favorite question is “why?” and my most despised answer is “because that is our protocol” or “that is just how we do things”. Hopefully you get the picture.
(rant alert)
Here is the problem with that philosophy. Protocol and normal methods work best on more normal/average kids. Caden is far from normal. He is a very medically complex child. The doctor said that she was going to increase Caden’s IV fluids. I asked why. She said because she wanted to make sure he was getting enough fluids. She siad they had no way of  knowing how much fluid kids get and that kids who are working harder to breathe use more fluids. I then told her that I could tell her exactly how much fluid Caden had taken in today. I told her that given the fact that Caden is exclusively tube fed I know that once he finished the feeding hanging over her head he would have had approximately 1200 milliliters of free water. The formula he gets is 250 ml per can (6 cans per day) and the free water content is a little over 80%. (6×250)*0.8=1200  Add that to the 430 ml of IV fluids Caden received in the past three hours and that comes out to 1630 ml of fluids today which is well above his normal intake which was calculated by a nutritionist here at MUSC. She then said…well when kids get sick they can get dehydrated because they are working harder to breath, etc. I told her that I understood, but Caden has only been symptomatic for the past 15 hours and he has already been given 430 ml of extra fluids and he was being given 10 ml per hour to keep the IV open. So by this time tomorrow he will have had 50% more fluids than he normally gets in a day. I then asked if we could just wait to make the adjustment. She still protested and tried to justify her recommendation. I asked if there was any objective evidence that brought her to this recommendation or was it just protocol. I did not tell her this part, but she was the sixth doctor to see Caden today and she was the first one to mention any potential need for increased fluids. I told her that the IV was placed for drawing blood and delivering the Rocephin. I agreed with keeping an open IV while inpatient because he would need more IV meds. I asked if Caden’s blood work showed any evidence that he needed fluids. She said no. She then said that this was just how they do things with kids who are working harder to breathe and have a high heart rate. I reminder her that Caden was eating and that he was not breathing like this all day. He was only showing signs of discomfort during his feeding. And oh by the way, he ALWAYS has a high heart rate when he eats, ALWAYS. His heart rate runs between 150-160 when he eats and slowly drops back down to the low 100s about an hour after eating. I also reminded her that Caden had been complaining of pain in is arm (above the IV site) from the time they started the IV fluids at such a high rate until the time they finally turned them down to 10ml per hour. Finally she agreed to wait until they had some output measurements to “determine” if he was peeing enough. She then left in a huff.
(end rant)
Why is common sense and objective review of the patient’s condition so often trumped by PROTOCOL?
The Night Goes On
Caden finally got to sleep at about 10:30 tonight. He is now resting well and his fever went way with a single dose of Tylenol. I believe we are finally settled in for the night. He is only on 1 liter of oxygen and his SATs are hanging at 95-97…which is great…especially for a kid that was just admitted to the hospital for pneumonia.
Prayer Requests
Please pray for:
– Caden’s rapid and complete recovery
– Caden’s protection from other illnesses and complications
– Caden’s comfort and continued self-control. He has been such a great sport with the nurses today.
– Understanding and compassion for Riley, JJ and Levi
-Â Decrement, humility, and thankfulness for Sherry and me as we deal with the staff at MUSC