Apartment/Roommate Hunt and Baclofen Pump Update

Today I met with a potential roommate in Cambridge, MA and I feel like we clicked almost instantly.  As I was leaving, she told me she was waiting to hear from other potential roommates, but that she would let me know soon whether or not I could move in at the end of the month.  This apartment is a three bedroom, and with two leaving, there are two "slots" for potential roommates.  I think my chances are good.  I feel like I'm talking about a job interview when talking about the apartment hunt at this time of the year, but it's true.  People "interview" and visit for roommates, the same way they would for a job, except the process is much more personal.  The other obvious differences being rent and a firm deadline.  In my case, my deadline is two weeks away, eek!

Yesterday, I met with the Neurosurgeon at the Brigham who will most likely be doing the surgery to implant my Baclofen pump.  I still need to hear from his secretary to schedule my visit with Anesthesia and have all of my pre-op tests done.  I really like this doctor.  He took time to answer my questions and did not have a "superman" ego.  Talking with him was like talking to an equal.  Dr. A said I should hear from his secretary within 3-4 days, so hopefully I will hear something by Friday after I return from volunteering.  I am really ready to get this going since I have had the spasticity in my toes and ankle for about 10 years.  As ready as I am to get this scheduled, I will probably choose to have it done around mid-September to allow time for me to move and get settled in my (yet to be determined) new apartment.

In other news, I am taking Human Growth and Development through Bucks County Community College.  It starts on 8/25 and goes until the second week of December.  I really hope I can get through this class because for whatever reason, I don't do well when I take one class per semester as demonstrated by my poor approach to Medical Terminology earlier this summer.  I will take another go at Medical Terminology  in October during a 10-week session.  

General Update and Maine Tomorrow

Today is August first which means the lease to my very first apartment ends in 30 days.  I received two leads from a wonderful realtor who finds roommates AND apartments.  The first was too far away, while the second had a weird layout and I didn't get a good vibe from it.  My expectations are much lower this year since time is not on my side and my budget is much lower.  I was going to meet with someone I found on Roommates.com today, but she had to work so we will have to meet when I return from my vacation.

Things have been slowly progressing on the Baclofen pump implantation front.  In Philly, we need to schedule the intake appointment at Jefferson (neurosurg, anesthesia, and pre-op tests).  I need to do the same in Boston at the Brigham, but I am rather hesitant since after multiple messages, I have yet to hear from Dr. L at Spaulding to get the OK to proceed with implantation surgery.

I have made progress in the Child Life practicum/internship department!  So far I have applications for and am planning to apply to the practicum at Yale-New Haven Children's Hospital, Alfred I duPont Children's Hospital (in Delaware), Children's Hospital of Philadelphia, and St. Christopher's Hospital for Children (in Philly).  I also have the internship applications for Bristol-Meyers Squibb Children's Hospital (in NJ) and Hershey Medical Center (in PA).  I am slowly and steadily working on these applications as I contact other hospitals for applications.

I leave for Maine tomorrow.  My mom and dad spent the night here in my apartment and I will sleep on my futon.  I have been going to Maine for about as long as I can remember and you can bet I will bring my laptop along so I can blog while I am there.

Results of Baclofen Trial

Sorry for the delay.  I was tired after the Baclofen trial and left soon after for Pittsburgh, so I didn't really have time to update.  


After about 10 years, I feel like I found my legs again.  I had the trial at MossRehab in Philly.  The procedure went well although I would have preferred to be less aware than I was.  I wish they had sedated me more so I would be in a sleepy zone and not feel everything from the prep with iodine to the local to the big needle.  I did get 1mg oral Ativan 2.5 hours before going to the OR, which I hoped would work, but did not.  

Now comes the harder part, deciding if I want the implantation surgery in Philly or Boston.  When I saw Dr. L at Spaulding earlier this month he said the only hospitals that really implant Baclofen pumps in Boston are BMC and Brigham.  I don't want it at BMC because I have never set foot there.  Brigham could work because I have seen two doctors there and been to their ER once.  In Philly, my choice is Thomas Jefferson University Hospital, but I have never set foot there either.  As far as the issues concerning Mito and surgery go, there seems to be more of a general awareness of the disease in Boston compared to Philly.  I also have many supportive friends in Boston with Mito who are more understanding of the disease than my own parents which is a big pull.  

I emailed Dr. L, my great mito doc at CHOP (in Philly) and Dr. S, my mito doc at MGH (not to be confused with Dr. S and BI) asking their opinion.  Dr. L doesn't have a preference and Dr. S thinks I should seriously consider Brigham.  I feel I am also pulled towards Brigham since I am currently living here and so pre-op testing and appointments would be really easy to do compared to going back and forth on the train to Philly for the same thing.  

For now, I will schedule the initial appointment with the neurosurgeon in the respective cities.  Even though I haven't chosen a city/hospital yet, I feel I need to get the process going and then choose once things come together to determine where I will be living come September.  

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.