Recovery from Spinal Fusion Surgery: Home

Happy New Year! Praise the Lord 2008 is over and now we can look forward to a new year with expectations of good health and prosperity for all.

 

Katie was discharged from the hospital on November 6, 2008, nineteen days after she was rushed to the emergency department at the Children’s Hospital. Since then, she has been stable and making progress but she is still not “out-of-the-woods”. Her bi-weekly CBC blood work continues to improve but is still not normal. Her surgical incision is closing from the inside out and now requires wound changes once a day. Her surgeon has ordered six more months of continuing antibiotic treatment – three months administered via IV twice a day and then three months administered orally.   

 

We have a standing weekly appointment with the surgeon who monitors blood work and modifies wound dressing techniques as necessary. Each week it’s a new ball game. We started with the “wound vac”, which required changing by a “certified wound nurse” three times a week. After four weeks of this, the deep muscle tissue started to fill in unevenly and the “leak” alarm would invariably go off when I had no nursing coverage. The most frequent time was on a Saturday or Sunday morning. I was getting a bit cranky and the last thing I wanted to do was a wound vac change at 2:00 a.m. to fix a leak.

 

My short temper with the wound care staff and the uneven tissue growth resulted in the wound vac being discontinued after four weeks. It was time to re-think the process and they came up with packing the wound cavity with gauze impregnated with Dermagram-B Cream. After watching the staff pack her spine I thought this is going to be a no brainier process and much easier than the wound vac.

 

My first attempt changing the wound vac dressing reminded me of an old “Calvin” cartoon where Calvin ended up with more wrapping and tape on him than on the package. It was not much different with me. I had pieces of the dressing film attached to everything including Katie’s hair, bed and my husband who was assisting me. It was a mess. However, I did get a good seal around the wound and that was the goal. It was wonderful to free Katie from that machine which made so much noise.

 

Since then, we progressed from Dermagram-B Cream to several different types of dressings changes depending on how the moisture content of the incision. For example, we used Mesalt, wet-to-dry gauze and Telfa bandages. I’ve also become quite good at monitoring how a wound changes during the healing process, with color and odor being the two of biggest indicators that something is wrong. 

 

Katie’s strength and endurance has improved in the last month. She has been sitting in her wheelchair for more than three hours a day – this is real progress! Nutritionally, she is doing well enough and is gaining weight. This was a big concern this past year before her surgery. Katie’s Pediatrician felt the scoliosis was so severe that it was interfering with her ability to properly digest food and therefore she was not receiving optimal nutrition.  

 

During her second hospital admission, we were surprised to learn that, in addition to a raging infection, she might also have a “sick thyroid” as her protein and potassium levels were well below normal. We noticed that she didn’t respond when poked with needles. I was told that our brains send out a chemical which produces a “fight or flight” response to pain or stress. In children like Katie, crying is a normal response when in stress or in pain. This wasn’t happening at all when painful procedures were being done on her. We were concerned that there was another underlying problem developing.

 

However, adjustments were made to her diet – e.g. – amino acid powder has been added to her formula and vitamins and nutritional supplements have been restarted. We are excited that she is gaining weight steadily but I’m still concerned that she is still missing something nutritionally. She is now experiencing an unusual amount of hair loss as well as muscle pain when stretched or massaged. As of yet, no new dietary changes have been ordered.    

 

We therefore continue to wait and monitor. At the end of January, the Vancomycin will end marking the halfway point of the treatment and Katie will then start on three months of oral antibiotics. Bi-weekly blood work will continue checking the “CRP” (C Reactive Protein) and Sed Rate (Erythrocyte Sedimentation Rate) levels. When these levels reach and are maintained within normal ranges, the surgeon can declare victory. However, if these remain high, this means that the infection is still active. The only alternative would then be another surgery to remove the rods from her spine and we start all over again. I don’t want to think about that prospect.

 

 

In the coming weeks, I will be changing the focus of this blog to a discussion of topics in the news relevant to parents of children with disabilities. These will include epilepsy, ethical issues associated with physician discussions of end-of-life planning and educational topics etc. So – stay tuned!

 

Our deepest sympathies go out to the family of John Travolta and Kelly Preston on the loss of their beloved son Jett. Words cannot describe the pain and sorrow that a parent feels when they have lost a beloved child. Our prayers are with you during your time of grief.