Saturday, February 27, 2010, 11:51 AM
From Aunt Kim....Well, Feb 24 Wed. Gage, Beth and I went to Duke for an Ultra sound of his kidneys and bladder and to see (we thought ) the new nephrologist that Dr Gallentine, who is Gage's neurologist that we love, wanted us to see. The pediatricians were given a card with the specific name-Dr Rasheed Gbadgesin to make the appointment with and his phone number. Well......they made it with someone else in the group. So when we checked in and went to ultra sound early they took us right in and then we were 1 1/2 hours early for MD appt so we went to Childrens Hosp and they signed us in and said if the MDs in the morning could get around to us they would try. There are 2 MDs in am and then they switch 2 in pm. Well, PRAISE BE TO THE LORD. Beth, Gage and I are sitting there doing his feedings, nebulizers, meds etc his blood pressure today is 135/90 and in walks DR RASHEED. You see even we get things in our lives all messed up- God fixes them. The pediatrician scheduled it with the wrong MD;  Dr Rasheed agreed to see us/work us in the am clinic; x ray worked us in early---God's hands we're all over this so Gage and Dr Rasheed could connect.  We really liked him-as well we should since this I felt was all set up by the Lord himself. How many times though does the Lord hit me over the head with "Wow" moments and I think my way is still better?  Anyway today for once I hushed and went with the flow.  Gage's ultra sound showed good kidney and bladder flow, and was relatively a "normal" test. His blood pressure is too high. Dr Rasheed wants it to be 90/40 target at the highest 100/50-60. So I will take for 2 weeks three times a week in leg and arm and fax to him. He doubled his current blood pressure pill. He was not taking enough based on weight-I am a little upset (but today is a blessing day so let it go) b/c I have been screaming adjustment due to wt gain and all we do is get clapping for how big he is getting. He has lost some wt-4-5 pounds.  The MD asked us if his pediatrician knew about his lungs and coughing and I am always embarrassed to say-yes they know he has pneumonia since Jan 10 and is coughing, choking, using a suction machine for secretions, but still not on an antibiotic...I really in my heart do not believe they would let their own kids be like this for over a month. Beth will take him next week if he continues.  Gage had labs drawn to rule out endocrinological blood pressure reason and the little lab man was so sweet got it on the first stick and Gage never whimpered even when Aunt Kim's head and the lab man's head just about hit as I was holding his leg.  It always helps when Beth says "you got 2 sticks" just before they stick.....sweat pops out and they look at me and say "that's right I hope your feeling lucky".  Friday, Feb 26...Aunt Kim wakes up at 3am because I think I heard someone beeping the horn outside and I am late. But I have to be up in 30 minutes anyway so I get up. Gage was up at 230am Beth said and we are all walking zombies as we load up in the truck for the 6 hour EEG to measure brain seizure activity. We arrive to Duke and Gage is coughing, gagging and wretching at times. The girl that is hooking is head up tells us she plans to unhook him at 300pm to get us out before traffic. Gage likes to have his head scrubbed and rubbed so it doesn't bother him. We also have to put a urine bag on (which I am sure is so very comfortable) and then later on I run that over to the Children's Hospital. He goes from lying down, to sitting in my lap, to Beth's lap, to lying down, to rolling on his stomach....over and over. We have the TV on Dora and Sponge Bob...by 3pm I am humming these words to these cartoons and I feel like if I have to hear it one more time I am going to scream. No wonder mothers and fathers buy kids TVs to go in their kids rooms. It would drive me insane. Thank goodness Hattie doesn't have a favorite TV show.  My brother ML called and talked with Gage and Beth held the phone up to his ear. I just about lost it. Gage had been kind of fussy, but when he heard his daddy's voice he sat right still in his mama's lap and he was concentrating on that voice and his eyebrows would lift up and he was so still. Tears-Wow. Even writing this wow. We will not know the results of this until Dr Gallentine calls, and this will be a part of what will qualify Gage for the study. I will let you know.  We were very very tired on the way home. Gage coughed and wretched and required suctioning. Hopefully he will get some relief from this pneumonia soon. Thank you for the prayers-we had answered prayers, and we are truly blessed. I love that little man sooooooooooooooooooooooo much my heart hurts.  I am blessed beyond belief I had a nephew turn 19 this week-Elliott-attending East Carolina University. Niece who is driving with supervision -Taylor-Gage's sister-please stay off the road when you see her coming. Just Kidding...an Older, Wiser, Crazier, Aunt Kim
*BETH*