Baclofen Trial Day 1

Tomorrow is the second and most important of the three day Baclofen trial.  I arrived at the rehab hospital around noon today and was taken to my room soon after.  My vitals were taken by the NA and my nurse came in to ask me a lot of questions to assess my needs, history of falls, present/past illness, etc.  My doctor came by to check-in and drew a pattern on my back to serve as a guide tomorrow morning.  I also met with PT who assessed my baseline so they would have something to compare to after I got the medicine into my cerebral spinal fluid.  I will have an IV placed after I take my night meds.  My dad is here and we are getting ready to watch the Home Run Derby, which means the All-Star Game is tomorrow night.  We are celebrating by eating Cracker Jacks.  Our back lab was named Cracker Jack, by we shortened it to Jack because I thought it would be a mouthful saying, "Cracker Jack, come!"

(He doesn't have a ball in his mouth, that's just how it tongue came out.)

The real action ;) starts bright and early tomorrow morning.  I was told I would be woken at 5am and I think my doctor said the procedure would begin at 7am.  I should be back here in my room by 9am.  PT told me I would be checked every hour to see how well, or not well the trial worked.  My doctor said the medicine should reach it's peak at around 1 or 2pm, but I will be checked hourly to see how I do at the beginning, middle and end.  I will receive 50mcg tomorrow and there is a chance I will not get any effect.  If that is the case, they can do 100mcg at a later date.  Baclofen is a muscle relaxant so there is a chance it will relax certain muscles that I need such as the ones in my bladder and colon.  If the intrathecal (cerebral spinal fluid) Baclofen interferes with these muscles I may decide to not go further, but only time will tell.

T'was the Day Before the Baclofen Trial...

Tomorrow is the first day of three for the long awaited Baclofen trial in Philly.  I am expected at the hospital's Emergency Room at noon.  (This is the first time I have ever heard of an ER inside a rehabilitation hospital.  Traditionally, rehabilitation hospitals only serve those who require intensive inpatient physical therapy or people like me who are having a Baclofen trial.)  Tomorrow my baseline will be assessed as I do various things.  This will give the doctor something to compare to after I have Baclofen injected into my cerebral spinal fluid.  Baclofen is a muscle relaxant and the goal of the trial is to see if a Baclofen pump is for me and if I respond adequately to 50mcg of the medicine.  Results can really only be measured against success and comparable results from the first day, tomorrow.

Right now, I really have no idea if the Baclofen trial will even begin tomorrow because I was sick last week.  My mom called to let them know and ask if it should be rescheduled, but unfortunately, nobody returned our call.  If I understand correctly, you are supposed to be infection free at least 5 days before the test dose to avoid complications after the procedure.  (I forget exactly what was meant  by this, but the doctor made it seem like the incidence of post-procedure infection, i.e., meningitis, was higher in those who had an infection close to the date of the procedure.)  I really hope I don't have to reschedule this trial.  I am as prepared as I am going to get for this and I don't know when the next chance will be because that it entirely dependent on how many others are waiting because the doctor only does the trial one day per week.

Practicum, Job Search, Online Course and Baclofen Trial

Yesterday I emailed the 12 institutions from Massachusetts to North Carolina that offer Child Life practicums.  So far, I have heard from two institutions.  Tufts Floating Hospital for Children in Massachusetts does not offer practicums/internships to students not affiliated with certain colleges.  I saw in that this was the case in The Child Life Council Directory of Child Life Programs but I thought it never huts to send an email to ask because the worst that could happen was they would say no.  Lehigh Vally Hospital in Pennsylvania also got back to me and they are not currently offering a Child Life practicum.

Today I applied to the full-time Administrative Service Representative II position in Urology at Children's Hospital Boston.  (This position essentially schedules outpatient appointments.)

My online Medical Terminology course through BCCC began on Tuesday.

On Sunday I will go home for my Baclofen trial in Philly.  I will be admitted to MossRehab at 12noon on Monday assess my baseline functioning.  Tuesday I will have a test dose of 50mcg of liquid Baclofen administered in the OR.  The rest of the day will be spent doing the tasks I have difficulty with.  Wednesday I will go home.  If the test dose yields no effect, I will likely return later in the summer to try 75mcg or 100mcg.  If the test dose (aka trial) goes well, I may elect to have a permanent pump implanted which would involve Neurosurgery at either Thomas Jefferson University Hospital in Philadelphia or at Brigham and Women's in Boston.  

Interview, Spaulding and Volunteering

Yesterday morning I had an interview for the Patient-Family Advisory Committee at BIDMC (Beth Israel Deaconess Medical Center).  Essentially members give comments/suggestions in an effort to improve the hospital and patient care.  Being the all too seasoned patient that I am at BIDMC, I have many suggestions.  Having gluten-free food available in the ER for those with Celiac Disease so we don't have to endure a hunger headache or eat the regular food.  Extending the hours of Health Care Associates (HCA), the primary care office to include weekends and later weekday hours for those with colds, urinary tact infections, ear infections, belly pain, etc so they can be treated faster and not wait in the ER for hours on end while risking spreading their illness to others.  I also think the kitchens for inpatient food service should stay open longer, at least past 7pm.  When I was inpatient in November I had been sleeping for most of the afternoon and when I went to order dinner at 7:30, which seemed like a reasonable time, I was told the kitchen had already closed.  For dinner I had a sandwich on wheat bread.  It does not make sense to not be able to receive gluten-free food past 7pm at the same medical center where I was given the diagnosis of Celiac Disease.

Interviews are still going on, but I expect to hear something before the first meeting in September.


After about 10 minutes in my apartment I had to call a cab for my 2:00 appointment at Spaulding Rehab, also in Boston for a second opinion regarding the Baclofen Pump saga.  The taxi was late to arrive and I arrived at Spaulding at 2:17.  (I would have taken the T, but I didn't know exactly where the orange line T stop was in relation to the hospital so I decided to play it safe and take a cab.)  Thank goodness the doctor was running behind or else I might have to reschedule.  Normally I would not mind rescheduling, but since I have the Baclofen trail in PA next week, getting another opinion post-trial would be backwards.  I waited for about an hour before I was seen.  Thank goodness for my Kindle.  Long story short, I really liked the doctor and he agrees that a trial is a step in the right direction.  Hearing Dr. L describe the abnormal muscle tension in my left leg and foot using spasticity and dystonia, words that I have always used myself to describe it, but words my neuro at BIDMC always challenges and refuses to use made me realize how stressful the doctor-patient relationship is.  I see my neuro at BIDMC on 8/17 and if he has not changed his ways, he will loose me as a patient.  Dr. L gave me his email address and I will write to him during the trial in PA.

I need to have two doctors and two rehab hospitals managing my care because even though I spend most of my time here in MA, I still go to PA every now and then because my parents live there.  If the trial works and I like the results I get from it, I will likely get the pump implanted, but I would rather feel comfortable with the doctors who manage my care in both states before I have life changing surgery.  I asked Dr. L if they implant Baclofen Pumps at (MGH) Massachusetts General Hospital, but he said only (BMC) Boston Medical Center and Brigham and Women's Hospital implant pumps.  If the trial works and if I then choose to get the pump in MA, I would likely get it at Brigham since I have been there about three times for appointments.


I left Spaulding at around 4pm, called a cab and went straight to (CHB) Children's Hospital Boston.  (It only occured to me just now that I spent the entire day in a hospital.)  While these past few weeks have been crazy from the Child Life conference and monumental fall in AZ, to the wedding in PA, and the various appointments I had in Philly, I haven't been able to volunteer.  This coming week I am leaving for PA for the trial in Philly and a visit to Pittsburgh to tour Children's Hospital Pittsburgh and meet with the child life director.  Even though I volunteered 4-8pm (I typically work from 2-6pm), it was nice to be back in my element after being away from it for awhile.

Career Fair, Books and Upcoming Events

One of my first stops at the career fair was Children's Hospital Boston's table.  (I thought this would be a good start since it's hard to feel intimidated when one of my "employers" on my resume matches one out of the many institutions represented at the fair.)  After approaching the table, I greeted one of the representatives and explained that I had been a volunteer at CHB for close to 5 years, and my goal was to become a Child Life Specialist.  He learned through my responses to various questions that I had applied twice to the Master's Child Life program at Wheelock, but was denied.  I also told him how I was advised by the career education center at Simmons to gain some administrative skills because that would help me a great deal in the job market.  (I forget the sequence of events exactly because I was rather nervous since this was my first career fair.)  He asked me more questions and inquired about my roles and responsibilities as a seasoned volunteer on the inpatient unit.  When he asked if I had applied to jobs at CHB before, I told him I had, but never got further as far as an interview was concerned.  He offered to look over my resume even though they were not accepting them to see if he could offer me any suggestions.   After a careful look over, he handed it back and told me it looked very strong, strong enough in fact for an Administrative Associate I position, a step or two above an Administrative Assistant I.

I was pleasantly surprised.  After submitting so many resumes and applications to CHB without response, I thought I was worthless as far as employment goes.  It took a lot for me to contain myself and not cheer, but only smile and and say thank you.  I felt like I had been hired on the spot.  After learning the physical location of CHB HR, I made a mental note to visit tomorrow.  (I have always called, assuming they were in the main hospital.  I have also never had a real reason to visit the department in person until now.)  

I called my supervisor at CHB yesterday and left a message on her cell hoping to meet with her sometime this week, but it looks like it will have to be next week because she will not be in on Friday when I volunteer.  I really need to talk to her and pick her brain about Child Life practicums/internships and if I could do something independently at CHB.  


Also, another section was created for the online Medical Terminology course at BCCC so I am now registered.  Initially I though it began on the 1st (today), but thankfully it begins on the 6th so I have some more time.  I have the book from the last time I attempted to take it so I don't need to worry about rush delivery of a textbook.  


Speaking of books, I just received Child Life in Hospitals: Theory and Practice and Create Your Own Blog: 6 Easy Projects to Start Blogging Like a Pro.  I ordered Child Life because I have heard it is the "bible" for Child Life Specialists.  I also ordered Blog because I really want to make the most out of this.  I could have ordered the Kindle format, but when it comes to textbooks and manuals, I prefer to have the actual book so I can highlight and tab to my heart's content.  I also recently started Eat, Pray, Love although I have yet to finish The Female Brain.  I guess I really need to step up the reading if I hope to hit my goal of 10 books before summer's end. 

On Sunday, the UMDF (United Mitochondrial Disease Foundation is having a float at the 4th of July parade in Chelmsford.  I have a voice lesson on Monday and hope to meet a mito friend friend from Ohio who is seeing a doctor at Tufts.  I will be going home on Wednesday because Allie will be in NC July 8th-15th.  I also need to stay infection and Advil/Motrin free from Wednesday on in preparation for the Baclofen trial on the 12th.  Technically, the trial is the 13th, but I will be admitted on the 12th for baseline observation, and then I should be discharged on the 14th after the trial works its way through.  I will receive 50mcg of liquid Baclofen and the idea is it will relax my muscles better than oral Baclofen ever could without making me sleepy.  However, Baclofen delivered through the spinal fluid can cause other problems since it does not exclusively target my muscles.  It can affect other organs like my bladder and intestines, but obviously there is no way to know what the effects will be until we do it.  If there is no response whatsoever, my doctor and I will try 100mcg at a later date.    

Arizona, an Appointment and Child Life

Sorry for the delay, it has been a crazy past few days.

At last update I was getting ready for my trip to Arizona for the annual Child Life Conference. As I registered for the event, I saw that there was still room on tour of Phoenix Children's Hospital and I registered. As I prepared to get off the bus, I slipped, skipped three steps and smacked my head on the sidewalk. I felt a bit off after I hit, but was able to get up, walk to the nearest bathroom and survey the damage. I got a big hit to a forehead and another to my chin. I took 3 Motrin right there in the bathroom because I knew I was in for a MAJOR headache. I forget who, but someone there suggested I visit the ER just to be sure that everything was OK. I gave in, but knew in my heart it was the right thing to do.

Long story short, about an hour after getting settled in the ER, I started feeling sleepy and "out of it". I also vomited clots a couple times. I got an IV for Morphine, Zofran and fluids. They also put me on the monitor so everyone would know if I fainted or something. I don't remember much about the head CT except for shouting, "My head hurts, my head hurts" repeatedly. The child life specialist who accompanied me to the ER stayed with me until 6pm when another came to my side. I was surprised and relieved that a CLS stayed with me for so long even after my mom arrived ~3 hours post fall.

I was admitted to the PICU for the night. I had normal saline and D10 flowing through my veins. (I told them I had Mito at triage and told them I would need D10 after I vomited the third time, and they believed me!! I was so relieved. They also called my neuro/mito doc's office and spoke with my MD's fellow!! What a concept! Way to go Phoenix Children's.

I was feeling much better the following day and was discharged around noon. Thankfully, I was able to attend most of the conference the following day and one of the event coordinators registered me as a student member of the Child Life Council which enables me to use a lot of their exclusive member only features on their website, which is a BIG PLUS for getting all the guidance and support I need from the council.

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On Monday, I saw one on my doctors at MossRehab in Philly. I have had severe spasticity in my left foot and toes since my second stoke in 2001. I have tried three oral meds, Botox A and B as well as acupuncture, but none of these has provided adequate relief and so we are exploring the option of a baclofen pump which essentially delivers a liquid form of the oral med through a pacemaker sized pump in my belly or low back. Oral (tablet) Baclofen works OK, but not very well with my spasticity. Before going ahead and surgically implanting the pump, I need to get a test dose to figure out if this entire idea is even an option for me.

I will be admitted for pre-test dose festivities ;) on July 12 and go into the OR for the actual administration of the test dose on July 13. On the 14th, the test dose will work it's way out of my body and I will be back to baseline by the 15th. Depending on how the Baclofen test dose makes me feel, I may or may not decide to progress to the next step which is neurosurgery, yes neurosurgery at Thomas Jefferson University Hospital to implant the device.

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If you recall from my last post, I was going to meet with the Director of Child Life today from St. Christopher's Hospital for Children in Philadelphia. The meeting went alright, but I did not gain anything from the experience apart from meeting another Child Life Specialist. What was echoed perhaps silently during the meeting with her was that my next step will be to apply to practicums. I am not sure how many I will apply to but I'm guessing between 5 and 10. I also feel it is important to visit the hospital I am interested in so I can attach a mental image to the institution. I will have a better idea of how many practicums I will apply to once I return to Boston and look through The Directory of Child Life Programs published by the CLC. Unfortunately ther is no uniform curriculum for practicums/internships set by the council. Each hospital has their own program.

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Every summer I set a goal for myself to read 10 books from start to finish. My first book is The Female Brain.