Friday, March 4, 2011


I'm sorry that I didn't write this yesterday after we got home.  I was up at 4:00 a.m. so I could have my "quiet time" and my coffee before I got Nicole up at 6:00 a.m. Going to either the ph doctor or cardiologist is so emotionally crueling for me that my mind just wants to shut down.    We left shortly after 7:00 a.m. Nicole slept a little on the way up (it is about a 2 1/2 hour drive).  We found it right away this time and even caught the little golf cart shuttle and was checking in 20 minutes early :o)  Nicole was weighed, height check, O2 stats check bp check.  It is funny how nurses react when they see her numbers as they are low.  We were then told to go back out in the waiting room.  We waited some more and then they called us again and Nicole had her echo.  It is very emotional for me and I don't know why (even though I think I have an idea).  We had to go back out in the waiting room again as they still didn't have any rooms.  We went back out to a packed waiting room.  The nurse  (who we didn't meet on our last visit) came out and got us and took us to a room.  She was very nice and was wonderful to Nicole.  The social worker came in and we talked about colleges etc.  The doctor than came in and talked to Nicole about how she was feeling etc.  I told him that I was concerned that when she was at the rheumatologist she had lab work done and it had come back with a low reading for her vitamin D which I guess they didn't find important to let me know nor did they fax the report to any of Nicole's doctors and I had to call them to fax it to me.  I had called the office to find out if I should give her a supplement and what dosage but I hadn't gotten a call back.  He decided that they were going to test her electrolytes, vitamin D, calcium and I think he said potassium. They believe she is low in vitamin D from not being in the sun enough and not from diet.    He also addressed the fact that Nicole's nose is red around the entrance to the nostril (which really wasn't red at all and I told them that it is usually worse).  They thought this was from the O2 but it only started happening when she began the Letairis.  I believe I read this was one of the side effects.  The dr. said he had never seen this side effect before.  Also, addressed the congestion which I guess she will have to live with at this point.   He had her walk around the clinic with the  dr. in training that was shadowing him when she was hooked to a pulse ox machine so he could see her numbers which were very low.  I guess I will be taking them during the day now when she walks and I will do them with and without O2.  I was a little disappointed because I want them to tell me that she's all better etc. and I know in reality this isn't going to happen unless Jesus heals her.
We then had to go to the lab which was full... fun.... we sat there for about 20 mins. until she was called.  Then we went and had lunch at Steak n' Shake and were on the road again.  We got home about 4:00 p.m.  The doctor said he wanted to see her every 3-4 months.

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