Day 11 – Spinal Fusion Surgery: A Lesson Learned

Katie has completed both phases of a two stage spinal fusion surgery. Both surgeries were successful and now we wait for Katie’s body to catch up with itself. Because of the trauma associated with this surgery, fluid retention and respiratory problems are typical and unfortunate side effects.

 

At this stage of Katie’s recovery, her body continues to retain more fluid than the doctors expected. It’s become a balancing act between providing medication to help drain the fluid while making sure that her blood pressure stabilizes (as the medication can cause it to drop). Her x-rays continue to show improvement, but not enough to remove the chest tube and take her off the ventilator. So we continue to wait.

 

Katie has been hospitalized approximately 30 times thus far in her 12 years of life. One would think that after these numerous admissions, we would have learned how she responds to treatment. While, for the most part, this is true Katie always manages to throw us a curve ball and surprise us.

 

With every planned hospital stay, the treating doctor will always estimate the length of the hospitalization. For this fusion procedure, approximately 10 days was the projection. However, knowing Katie as we do, we always add an additional 3 – 5 days to allow for minor unexpected problems.

 

As it stands today, it looks like we have to adjust the additional expected days from 3-5 to 5-10 for a total of number of 15 – 20 days. This results from her body not eliminating enough fluid to make a significant difference in her blood pressure and independent breathing so the ventilator can be stopped.

 

A Lesson Learned:

 

Within the first 24 hours post surgery, we discovered that Katie is severely allergic to a liquid called Benzoine. This liquid was painted around her mouth area so the breathing tube could be taped to her face. The resulting reaction was so severe that 2nd and 3rd degree chemical burns resulted and her face swelled to twice its normal size. It looked more painful than the just completed chest surgery.

 

After asking several times if anything could be done in lieu of taping her face, I was told by several staff Respiratory Therapists that no other alternatives were available. Then two “traveling” Respiratory Therapists came on duty and decided to brain storm other options to enable the removal of the tape and washing off the Benzoine from her face.

 

They were aware of a strapping system that didn’t require taping the face. On a hunch, they called a nearby adult hospital and explained the situation. Within the hour, the strapping system was delivered and to our excitement and relief, it worked perfectly.

 

Early Monday morning, a parade of Department Managers, Supervisors, Nurses and Doctors visited our room to check out the new “no tape” vent tube holder. Katie’s nurses reported that they were pleased with the holder as it was easier to do mouth care and suction her. However, I overheard a few of the “younger” respiratory staff therapists state that they were a little skeptical about the new holder and, if faced with the same situation again, would likely not utilize this for their patients. They were more comfortable with the traditional taping method they had been using.

 

This was disappointing to hear. In many instances, when faced with a difficult challenge, there is a need (and often a benefit) to step “outside of one’s comfort zone” to try something new. What happens to the next child who comes through this hospital requiring an unusual solution to a problem?

 

My hope and prayer is that someone will remember our Katie, step outside their comfort zone and try something different.