Saturday, October 5, 2013

Appointments, Appointments, and more Appointments

This was appointment week for us.  Both boys and I had appointments, a total of 12 to be exact.  It was busy to say the least.  This is the first time in several months that we have had such a hectic week.  When Brinkley first came home from the NICU and from MUSC, it was not unusual for our schedule to be like this every couple of weeks.  (I'm not complaining about the slow down!)  

We started our week with a visit to pulmonology and cardiology.  I told Elora, our home health nurse, to be prepared.  We see the nurse practitioner at the pulmonology office and to say that she loves Brinkley is an understatement.  As she was opening the door to come into the room we heard her tell the medical student, "be prepared to fall in love."  Lisa, the NP, was glad to see that we had weened off the 02 and was even more impressed that when they tested him his 02 level was 100%.  (I was a little impressed too!)  We talked through the procedure that Dr White had done at MUSC in August and made our plan for the winter.  Last week they had their first confirmed case of RSV so we were given some pretty strict guidelines to go by for the next few months to protect him from RSV.  Don't be surprised if you don't see him out much.  After cold and flu season, we may start weening off some of his respiratory meds.  Overall they are pleased with his progress and think that he is doing well!

Dr Raunikar, our cardiologist, only had GREAT things to say.  Brinkley's EKG and Echo looked GREAT!  He was extremely pleased and started weening B off one of his heart meds.  Dr Raunikar will be on a mission trip to Vietnam for the next few weeks.  When he returns we will check in with him about the change of meds and go from there.  

Tuesday we had our regular therapy appointments and Reese had a sleep study.  I plan to write a post about the sleep study this week, so be on the look out for that.  Wednesday Brinkley saw Dr Markowitz, the GI, who was also pleased overall with his progress and also wants to start weening him off of meds by letting him outgrow the doses he is currently on. He had some concern about Brinkley's weight, but only wanted to watch it at this point.   We will see him again after the first of the year and hopefully remove the feeding tube!

After seeing Dr Markowitz we went to neurology for our initial visit with Dr Morales.  We had been referred to him when we were struggling with respiratory issues.  There was some concern that an underlying neuromuscular issue could be playing into the respiratory issues.  Dr Morales did a through exam and did not have any concerns.  He said that an MRI would allow him to see if there are any abnormalities that could produce problems, but due to B's pacemaker he can not have an MRI.  A CT scan is the next best option, but Dr Morales said that he does not see anything concerning enough to justify exposing him to the radiation of a CT.   He does not anticipate any problems, but because Brinkley is at higher risk for potential issues we will be seeing him again after the first of the year to check again.    

Thursday we had our regular therapy appointments and we are wrapping up our weekend with the Greenville Buddy Walk tomorrow.  We are excited about the walk and tailgating with Team Brinkley!   You still have time to join us.  The walk is tomorrow at Greenville Tech's Pleasantburg Dr Campus.  We'll be there around 1.  Hope to see you there!

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