Cerebral Palsy, Detroit, Family, Health, Michigan, Our Son

Doctor, Doctor, Give Me the News

While we were in Michigan we saw several doctors. When we first arrived, Sebastian was quite sick and soon diagnosed with pneumonia. Thankfully, he recovered quickly. We went to see our family doctor because that’s who we’ve known my whole life. He is not a pediatrician, but was helpful and able to guide us in the direction of other doctors to visit while we were in town. Thankfully, we have very good health insurance through Ali’s company. Our insurance is based in the UK but international so it covers us anywhere. The tricky part was finding doctors that took our insurance. And we did. In Southfield and Detroit, about 50-60 minutes drive from my mom’s. But we were in Michigan, and in Michigan, you drive places!

I’m going to run down the list of doctors and procedures we had while in Michigan. These happened mostly the second month we were there and in some cases the last week we were there. This was because once you find a doctor, then you have to get an appointment and sometimes there aren’t any for weeks at a time. In our case, I had to explain our situation so we could get in when there were cancellations. If you didn’t hear from me while I was in Michigan and we were planning to talk or even see each other, I think you will understand why that didn’t happen after you read our list (coupled with therapy treatments).

Neurologist: Southfield. We went to the MIND Institute. The neurologist did a basic check up and didn’t tell us much of anything that we didn’t already know (since I know my son so well). He did refer us to several other doctors. Which was a big help because you can’t see other doctors without a referral. I did not know this!

Ophthalmologist: Southfield, part of the Children’s Hospital of Michigan.  Great doctor. Had over twenty years of experience with CP kids and was able to diagnose Sebastian with strabismus, and prescribe him some pretty cool eye glasses. His strabismus is NOT related to his CP so can be corrected by his glasses. Sweet. We saw him twice.

Gastroentologist: Southfield, also part of Children’s Hospital of Michigan. Recommended two tests for Sebastian’s reflux. Barium Swallow test and Mag Airway test. Both were AWFUL. Traumatic for all involved. Went down to the hospital in Detroit for the tests a week after the initial appointment. No one warned me what the tests would be like but when I later mentioned them to the physical therapist, she was like, ‘yeah, those are tough’. Thanks. It would have been nice if anyone could have told me my son would be velcroed to a board from head to toe and rotated under an x-ray machine (Mag Airway) then forced to drink disgusting, thick, white, chalky serum and rotated again (Barium Swallow). It was actually comical that the nurse thought my son could be soothed by a bottle of this stuff, while being strapped down to a board, unable to move, a child that breast feeds and does not take a bottle. Not so easy. We used a syringe. A big one.

Ear Nose Throat: Southfield and Detroit; Children’s Hospital of Michigan. This was for Sebastian’s stridor. Essentially to see if/how it was connected to his reflux. He had the initial appointment in Southfield and after looking at the results of above tests, was scheduled for an endoscopy, 6 days before we were leaving the country. While he was under for the test the doctor decided to do minor surgery on his epiglottis, making two small incisions on either side because the flap was falling against his vocal chords. What was supposed to be an outpatient event turned into an overnight stay at the hospital.  I don’t even need to go there and discuss the extreme pain killers Sebastian was put on or the lack of sleep we both got. The amazing thing that happened was that I saw Sebastian swallow for the first time, purposefully and carefully. We have since seen a decrease in his drooling, except when those teeth are coming in. He was prescribed another type of reflux meds in addition to what he takes because during the endoscopy, the doctor saw that his esophagus was red from the acid in his reflux. The new medicine is working well. And his stridor is mostly gone. I think over time we can see it was a successful surgery.

So that should about do it (!!!). Nothing like fitting a year of appointments into about three weeks. We are very blessed that Sebastian is so healthy. I am very thankful to my mom for coming with me to every appointment because they were very tough. I had to retell the story of Sebastian’s birth to all of them and some in more detail than other’s. I had to watch Sebastian go under general anesthetic AGAIN and if you have ever done that, it’s pretty emotional. I had to make the ultimate decisions to go through with the tests. I had to talk to doctors and insurance people for lengthy periods of time to make sure everything was taken care of.

The day before the last test and surgery (it was learned that day we needed it and scheduled immediately for the next day) I had one freak out on Ali over the phone because the weight of all of these appointments and decisions was heavy upon me and I felt like it didn’t really effect him at all because he couldn’t begin to imagine what is was like from dusty, hot, Cairo. We work through everything and come out stronger. The creamcicle shake my mom and Sebastian picked up for me while I was ‘working through’ my conversation with Ali certainly helped too.

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2 thoughts on “Doctor, Doctor, Give Me the News”

  1. I am writing on behalf of the Children’s Hospital of Michigan because we recently learned of your blog post. We are happy to hear about your son’s health improvements. We also appreciate your feedback about how we might improve upon your experience by providing more information about what to expect before certain tests and procedures and have shared your feedback with our Imaging Department.

    If you would like to provide more information about your experience, please do not hesitate to call Lisa M. Landry, Director, Diagnostic Imaging, at 313-745-0257 or email her at llandry@dmc.org. Thank you for choosing the Children’s Hospital of Michigan.

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