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doulos
Joined: Feb 25, 2006
Posts: 141
Location: Springfield, MA
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 Posted:
Sun Apr 16, 2006 6:28 pm |
 
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My son and I are travelling to the National Institutes of Health for a week of testing and consultation. Please pray for:
1) Journeying mercies in our travels.
2) Wisdom and discernement as we disucuss Samuel's condition with the Doctors
3) Calmness and peace in our hearts
4) God's healing hand to work in our lives |
_________________
Awaiting His Shout,
doulos
Romans 8:28-39 |
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doulos
Joined: Feb 25, 2006
Posts: 141
Location: Springfield, MA
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| Posted:
Sat May 06, 2006 8:29 pm |
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Sorry my response has been delayed. Life just never seems to slow down long enough for me to catch my breath. As was last year's trip, this year was bothgood and stressful.
The week before our trip was disaster recovery drill at my place of employment. Between Monday and Thursday night, I worked 48 hours recovering systems at our DR site. At least my access point was local, so I didn't have to be away from the family. On Friday and Saturday, I prepared and packed for the trip - lots of laundry and planning.
Resurrection Sunday was uplifting and challenging. The worship was good, as was Pastor Rizzo's sermon. We spent a nice afternoon at my cousins with our extended family. Sunday evening was hectic: flight to Baltimore at 8:30 pm arriving after 10 pm, 40 minute cab ride from Baltimore to the Childrens' Inn. Samuel crashed in the cab, and got to be around 11:15. I crashed soon thereafter around midnight.
Monday was just plain rude. Our first appointment was scheduled for 7 AM, and we went until almost 4 pm.
Tuesday was much better. We had just a couple of appointments in the morning, then lunch and an afternoon in the Smithsonian on the Washington DC mall. We looked at the cars, trains, and trucks in the American History museum. Then we spent the rest of the afternoon in the Air & Space museum.
Wednesday was reasonable. Started around 9 am and went to mid-afternoon.
Thursday was a bad day. First, I had missed the EEG on the schedule and failed to keep Samuel up late in preparation on Wednesday night. So, I was expecting difficulties. Second, Anesthesia wanted to change the sedated MRSI on Friday to an earlier time because 2 pm was too long to keep Samuel without food or liquids. So, the MRSI started to move on Friday's schedule. Third, when we got to Neuro-testing, the schedule was corrected the EEG was actually on the scheduled for Friday and our documentation was wrong. Now, how do we fit both the EEG/ABR/SSEP tests (3-4 hours) in with the sedated MRSI (needs an hour prep) that wants to be early because of the no food / liquids requirement!? Well, they rearranged Friday - starting at 7:30 again, and cut us loose. So, we went back to the Air & Space museum hoping to catch the shuttle to the other site near the airport. We arrived JUST in time for the 3 pm shuttle. The cost was $24 for two roundtrip shuttle rides, the ride was an hour, and the last shuttle back was 5 pm. We paid anyway hoping to see the SR71 and an hours worth of other large exhibits. we raced out to the bus that they were holding for us. AND, the driver couldn't get the chair lift working!! Disappointed, we received our refund, looked a little at the jets, then headed back up the Metro for the NIH. Well it wasn't a total loss. Samuel and I had pizza for dinner and watched videos until 11:30 pm.
Friday was tough. Up very early, and back in Neuro Testing at 7:25 for the 3 to 4 hour EEG/ABR/SSEP. MRSI was scheduled for 12:30 and we needed to be in the Day Stay hospital for 11:30. The EEG/ABR/SSEP went long, and Samuel didn't like the cleanup. We got down to day stay a little late, but were OK. The nurse missed the IV in Samuel's left arm (2 sticks and no IV). When we got down to MRSI, the Anesthesiologist put in the IV in Samuel's right arm, but it infiltrated 10 minutes later before Samuel was under. So, they redid the IV in Samuel's right hand. Four sticks for one IV, and Samuel was NOT happy. He went under with difficulty and the test was long, almost 2 hours. Samuel took almost two hours to awake in post OP, and another two hours in Day Stay until we could go home. We got back to the in around 7:30 pm, and even though he complained about going straight to be, Samuel was asleep instantly. Then I packed and cleaned the room (per Childrens' Inn checkout instructions) as was able to crash between 11 and midnight.
I awoke Saturday around 4 AM - just before my alarm, got ready and finished packing. I woke and dressed Samuel around 5:30, and we were in the cab by 6:10 headed for Baltimore. We arrived in time at the airport, and managed to eat a little breakfast while waiting. The flight was delayed because of issues, but we arrived back at BDL around 10:30 am.
Quite a long week. Samuel had the following tests:
Interview / Exam with Dr. Timmons (investigating Fellow under Dr. Schiffmann)
Blood Tests
Xrays
Neuro-Psychology interview
Speech & Swallow Testing
Exam with Dr. Paul (Phietrist)
Interview / Exam with OT
Interview / Exam with PT
Muscle Sensory & Response Testing
EEG
ABR
SSEP
MRSI:MRI
Preliminary outcomes: |
_________________
Awaiting His Shout,
doulos
Romans 8:28-39 |
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