Day 39 Spinal Surgery: Complications

November 2, 2008

 

We’ve been on a roller coaster ride for days as we work hard to stabilize Katie in the ICU. On October 11, Katie was discharged from the children’s hospital and we thought that she was well on her way to recovery. However, eight days later, we found ourselves back in the ICU and praying like hell the problem was not her back – that Katie’s fever and reduced urine output was due to a bladder infection. Unfortunately, this was not the case. I was told Katie was in septic shock and that this was more than a bladder infection.

 

In the ED, it was discovered that the Band-Aid over the chest tube exit wound from her first surgery had pus on it. It was a small amount and no one seemed initially concerned this was the source of any problem or infection. The incision on her back looked clean and was healing nicely with no signs of infection. However, after a few days in ICU and no identified source of infection, the surgeon reluctantly sampled a small pocket of fluid near the incision site. I was told it was normal and, at first glance, it did look sterile to the naked eye. However, a day later, the results came back positive for a staph infection and possible meningitis resulting from the surgery. (Note: the meningitis is unconfirmed, as the surgeon did not do a spinal tap. During the wound debriding they found pus on the Baclofen pump catheter which was attached to the spinal cord. It’s assumed her spinal fluid was compromised.)  

 

She therefore had to be taken back to the operating room to have her spinal incision opened up to clean out the infection – not a good thing. When Katie returned from the operating room, she was attached to a device called a “wound vac”. This is a machine that pulls accumulating fluid/blood/pus from the open incision via two plastic tubes that are inserted through sponge like material packed into the wound and covered with a clear plastic film

 

Katie’s surgeon indicated that this infection was a deep one and she returned to the operating room three more times to have her wound washed and cleaned with a special antibiotic solution. I now wondered if the source of the infection came from the first surgery in which 4 discs were removed via her chest cavity.

 

After this, the “wound vac” sponge/dressing changes were done in Katie’s bed after pain mediation was administered. The first time I saw the bandage change at her bedside, I was overwhelmed and slowly knelt to the floor to quietly whisper to Katie that she was O.K. I wasn’t O.K. – but Katie was going to be. I knew it was going to be hard to watch but I also knew that I had to be trained to change this bandage when we got home. However, when I saw how deep her wound was and realized that I could actually see to her spine, I didn’t know if I could do this.

 

When I was 18, I took an EMT class that required me to work 48 hours in an LA hospital Emergency Department – it didn’t go well. At 18, I wasn’t prepared to see the things I did and I felt totally incompetent. Thank goodness that my job at our local ambulance company was a dispatcher in the office and I was not required to go out on calls. Twenty seven years later, I faced the same feelings of incompetence.

As a teenager, I knew that being a first responder was not a game or a way to feel important. This was serious business and I was afraid of making a mistake that would either hurt or even kill someone. Now, I look at my daughter and realize that there is no one else but me to do this because my home-care nurse is not allowed to change the bandage because she is not “certified” as a wound nurse.

 

Katie did quickly respond to the antibiotics and, once the point is reached where her blood pressure and fever are stabilized, we will be able to go home to continue her recovery. Of course, all of this is contingent on my learning how to care for a deep wound and administer IV antibiotics at home. I’m scared to be given so much responsibility – one mistake and I could jeopardize my daughter’s life.

 

I expressed my fears to Katie’s Pediatrician and to her orthopedic surgeon. They assured me that I’m not doing this alone, that I will have help and not to be afraid. The surgeon explained that it is overwhelming to see such a deep wound but, over time, I will get used to it and soon be moving the nurses out of the way to change the bandage myself. However, after the Pediatrician observed a dressing change, she realized that this would be too much for me. She therefore ordered a “certified wound nurse” to come to the house three days a week to change Katie’s bandage. She also ordered two of her office nurses to personally observe the changes as, in the event that the wound nurse would ever have to cancel, they will be my back up.  

 

At this point, there is nothing to do but roll up my sleeves and do what needs to be done.

 

Katie was discharged from the hospital on November 8, 2008

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.  

Spinal Fusion Surgery – Day 4

It is day four and Katie is currently stable and comfortable. They took out four of the desired six discs on Thursday and on Tuesday her spine will be wired to a stainless steel rod.  

 

Katie did very well the first 24 hours after surgery and was able to come off the ventilator. However, in the middle of the night she developed some problems caused by some fluid shifts in her chest cavity which required her to be put back on the ventilator. This was a disappointing setback as the last thing we want is for Katie to become dependent on a ventilator. This set back has resulted in her remaining in ICU until after the second surgery.

 

So far all the preplanning is paying off. Several of her regular doctors are checking in with us and following Katie’s progress closely. The nurses and attending physicians are monitoring her closely and are ready to answer/explain/clarify any questions we have. Each nurse/doctor/support staff assigned to Katie understands her medical history and why we are here. It has not been necessary for me to repeat myself to every person who walks through her door. These are all good signs.

 

During the intake process when we first arrived here, I was pleasantly surprised the hospital had recently installed a new computer system that stores all of the patient’s medical history. To illustrate how detailed this system is the nurse showed me a few screens where someone has input “Katie at a Glance – Statistical Fact Sheet” which includes a list of our pets among other things.

 

She assured me that it was no longer necessary to repeat myself to every department. It’s now all in the computer. This is all good news and I’m glad after 12 years of coming to this hospital they are finally keeping a computer file on repeat customers such as us. But just in case, I’ll keep giving them the updated paperwork.

 

The current game plan is to continue monitoring her vital signs. In preparation for tomorrow’s surgery they have ordered another unit of blood and decreased her pain medication a small amount. Once she’s done with surgery, they will increase it again to the higher level. Now there is nothing to do but wait and try not to think about tomorrow.

Laying the Groundwork for Good Communication During a Hospital Stay

The blood has been tested, x-rays and photographs of Katie’s spine have been taken and medications have been reviewed – it’s show time. Well, not exactly, as there are still a few more important things that need to be done. When preparing for any hospitalization, it has been my experience not to assume that all the necessary information has been transferred and/or communicated to the right people and placed in the proper medical file. Never, ever assume!

 

 Alert Primary Care Physician and Specialists of the Upcoming Surgery:

 

My next step is to work on my check list:

 

First, I will notify her Pediatrician as having her primary care physician (PCP) involved during her stay will help us when we go home. How will this help? When a child is released from the hospital, the discharge instructions usually state to “call the surgeon for this and this – anything else contact your pediatrician/primary care physician.

 

Hospitals are notorious for not notifying primary care physicians that their patient is in the hospital until a week or more after the fact. I experienced the extent of poor communication at the children’s hospital we frequent the first time Katie was admitted for observation by one of her specialists. Her pediatrician had not been notified and had no idea she was supposed to monitor the hospital’s post discharge care plan. The care plan was pretty involved and required daily visits by a homecare nurse to monitor Katie’s vitals signs while she was on a very serious drug for 30 days. We therefore agreed that, in the future, I would call before any scheduled hospital admissions.

 

Another reason to involve your primary care physician during your stay is to serve as an advocate for your child if there is a care and/or treatment problem with hospital staff. Further, the PCP can also help explain and/or clarify recommended treatments to assist in the decision making process as well as help coordinate post discharge specialist care. Sometimes, it can get confusing as to who is who and who is doing what and the PCP can help sort things out.

 

Next on the list is notifying specialists. The decision on which ones to contact will depend on their specialty. For example, this current surgery will involve Orthopedics (surgeon in charge of Phase 1 & 2 surgeries); Neurology; Neuro-surgery (2nd surgeon involved with Phase 2 surgery ); Urology, Gastroenterology and Pulmonology. These specialists monitor Katie on a regular basis and know her medical history. Several, but not all of them, will pay her a courtesy visit and monitor her recovery.

 

If a bedside consultation is necessary, the appropriate specialist can address problems quickly. This then eliminates the need for the attending physician (the hospital doctor assigned to your floor) or the “Resident” (student doctor/doctor in training)) to make the referral through the hospital service.

 

A little planning ahead saves Katie unnecessary pain and discomfort because the doctors who know her best are right there following her progress and adjusting her care plan accordingly.

 

Be Prepared to Tell the Medical Staff What “Normal” Looks Like:

During a recent hospital stay, I heard the frequent question – “Is she always like this?” Katie is nonverbal and has limited movement in her arms and legs. When she is in the hospital, she usually lays there motionless looking around, crying and/or sleeping. This behavior is commonly misunderstood as “normal” for her. However, this is not so as, at home Katie is very expressive, responsive and alert.

 

To “enlighten” people about how special Katie is to us and describe all the wonderful things she can do (yes, Virginia, my daughter has a life), I created a brief two page  outline of the most important information /vital statistics along with a brief bio. An overview is provided of Katie’s home life – e.g. – the clubs she belongs to, her favorite activities, her current educational status and her pets. This will give the attending doctors and nurses an idea of what “normal” is for Katie.

 

 Completed Check List:

• Notified and updated her Pediatrician and the specialists in charge of the systems and/or organs involved in the surgery. 
• Notified the surgeon in charge of our absolute policy that we never leave our daughter unattended while in the hospital for any reason (other than being in surgery). We ask that the person in charge of the Recovery Unit be made aware of this and that the necessary allowances/arrangements are made for us (So far, we have never had a problem with a hospital refusing this request).  
• Updated her current medication list, including nutritional supplements and over the counter medications. I make multiple copies to give to attending doctors and nurses at all stages of her care (never, ever assume that the complete medical file and necessary papers are passed from one department to another.)
• Updated her historical medication list. This includes every medication prescribed since birth; thereason it was prescribed; the doctor who prescribed the drug; the dates started/stopped; the dosage amounts, the length of the prescription; and if stopped, the reason why (e.g. drug reaction, no reaction, treatment completed etc.). Multiple copies are made to give to attending doctors and nurses at all stages of her care (never, ever assume the complete medical file and necessary papers are passed from one department to another.) 
• Updated the list of all her hospitalizations and surgeries; updated “Katie at a Glance Vital Statistics Fact Sheet” and updated other data records, such as bladder infection logs / seizure logs etc. Again, multiple copies are made to give to attending doctors and nurses at all stages of her care (never, ever assume the complete medical file and necessary papers are passed from one department to another).
• Notified family, friends, church office and requested prayers for healing. Asked a close friend to be our family spokesperson in the event things get too overwhelming. This insulates us a little and keeps our friends and loved ones informed on a continuous basis without my husband and I having to make a lot of calls or send e-mails.

 Now, we’re ready to go. Please keep us in your prayers during this time!

The “Katie Khronicles”

A warm welcome to everyone reading this first Blog posting of the “Katie Khronicles”   on the CT Disabilities Connections website. I’m very excited to give people a glimpse into our family life as my husband and I care for Katie, our beautiful 12 year old daughter with both severe Cerebral Palsy and a seizure disorder. Katie’s story and experiences will serve as the platform to cover to a wide range of topics related to the world of disabilities and we hope that you will enjoy reading them and will also respond with your own thoughts, insights and experiences.  

 

There are times when life gets challenging (e.g. just about every day to varying degrees) and I sometimes find myself wish with all my heart that she was like other children her age. However, I know that, short of a miracle happening, this is and will not be the reality for Katie. Therefore, we simply move forward day by day continuing to love and care for her as just she is –  a sweet, non-verbal young girl whose personality shines through the many physical and cognitive challenges that have affected her since birth.

 

It’s ironic that I am beginning this blog two weeks before Katie is scheduled to have spinal fusion surgery. Scoliosis is one of the many cruel side effects of Cerebral Palsy (a condition caused by a stroke either before or after birth). Children with this condition usually have a stronger side and a weaker side of their body and physical development is often unequal on each side due to the brain damage. After twelve years of growing like a weed, the curvature of Katie’s spine has become so severe that it is beginning to compromise her lung function / ability to breath as well as negatively impact her digestive system and bladder. The only way to permanently correct the condition and its resulting problems is through this major surgery.

 

This procedure will be the biggest challenge and will pose the biggest risk of Katie’s young life to date and I am scared. There are no training manuals to help prepare us for what is coming. I have a couple of friends whose children had this surgery and did very well. These friends faced the same agonizing decisions as my husband and I are facing right now – is this the right thing to do? Is this going to make things worse or will it be too much for her little body and she………

 

Or, as she has done in the past, will Katie surprise all of us and do better than expected. These questions can’t be answered until well after the surgery. So I wait, try not to think about the future too much and pray, pray, pray.

 

On Wednesday, Katie will have the required pre-surgery physical exam. We will meet with the surgical team and, if they feel she is currently strong enough to undergo the two separate fusion procedures, we then continue with the preparations. If not and they decide to not go forward with the surgery, then I don’t know what’s next because we still have the same major problem with no apparent viable solutions.