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.