The Cardioligst Report!

We Went to the Cardiologist on Wed.. . . the much dreaded visit went actually good! The med change to reverse his enlarging heart has worked:) She gave him a clean bill of health and said she didnt have to see him for a year!! Its a great feeling!!!!

Got some great news today. . . .

I had been dreading the visit to Gages cardiologist today. Last visit showed thickening of his heart, and was explained all the risks of that. They changed his meds hoping it would reverse the damage. . . . . and today it showed that it worked.

The Governor Morehead School for the Blind. . .

We had an awesome 2 hour visit today with Nann from the school of the Blind. She will start coming out on tuesdays To work with Gage. I am so excited for what she has to offer him:)

P.S. He doesnt lik being called "SCRAWNEY"

I think it is funny that since we saw Dr. Rice on Wednesday and he told Gage that he was scrawney, Gage has been eating up!!!! :) It has been all we could do to get 20 ounces in him......on a good day, (they want 33-34 ounces a day) but the past few days he has been drinking anywhere between 20-25 ounces!!!! YAY!!! I just pray that he continues to eat this much and more!!!

The Feeding tube is a go......:(

On Wednesday Gage, Aunt Kim, and myself headed to Duke for Gages 2nd opinion on his feeding tube. I really liked the Dr., and he made me feel more at ease with this whole thing. Other surgeons that I have come across seem to have no personality or bedside manners, but Dr. Rice was very informed, talked quietly, and had alot of information to offer to us. He was not as concerned about Gages aspiration as he was about his nutrition. He commented that Gage was Scrawney!! Gage weighed out at a mere 17.6 lbs! He wanted to put in a nose tube temporarily, but we got out of that this time. The surgery is scheduled for Friday Oct. 9th. It will be done in Duke. Gage will have to go to the PICU for at least a day, then to the step down unit for a couple more days. He will not be able to have the surgery done by scope, because of his small size. There are a cople of tests that the Dr. wants done pior to the surgery, so on Sept 21-22, we will make our way back to Duke for the tests and Pre-Op. On the 22nd we also have an appt with Gages new Geneticist (Dr. Rice spoke highly of her) to hopefully get some questions answered about his syndrome. So, in the meantime we have to get cleared for surgery by some of his other specialists, which means more appts to cram in. I will keep you all posted as this all begins to unravel!

Below is Aunt Kims email that she sends out.....

From a very tired and Aunt Kim.... We liked this doctor alot. He is a pediatric surgeon for Duke and specializes in this surgery. I have checked his medical license of course so no surprises there. Papa got up at the break of dawn to get Beth and Gage to my house. He is a early bird like me. Beth and I had to park on level 4 of the parking garage because it was packed. She had control of the stroller as we went up the esculator with Gage and all went well until we reached the top and she said "Mama is getting better at this boy" and she ran into the side of wall at the top. Very funny. I was holding Gage reading him my mystery novel about a kidnapping which it seemed to me he understood when this young lady and her son came up and starting talking to us. Her 4yo child had cerebral palsy and couldnt walk so she totes him because the stroller weighs so much. She was commenting on Gage's curly hair when Gage in true Gage form lets out a LARGE stool to be heard around the world.....he gets that from Beth's side of the family. We laugh until the smell, when I hold my breath and extend him out to Beth to take to the bathroom. I guess Gage did not like the comments about his hair huh? Anyway after 10-15pounds of that he returns and we wait. The MD was very nice and we discussed alot of options. He was very concerned about Gage's weight 17.6 lbs today and blood pressure. He also wanted to make sure that we understood that.......here i tear up again......He questioned Gage's life expectancy and wanted us to know that it was limited, and that the feeding tube would be for comfort only. We know that based on Gage Dx and his other complications that we have been blessed with the time we have with him, but to hear it out loud is not pleasant. He said on 9-22 the Genetic MD will give us more on Life expectancy but the outlook is not good based on his condition and other dxs.....It is so easy for even me as a nurse to say "well, enjoy this, be grateful, you have this".....but when you are sitting in a room holding a precious little boy who is looking up at you and someone is telling you that the time is short/limited-only comfort measures...it is NOT pleasant. I rationally know that what he is saying is true, and I know that the Lord is with us in that room and will be with us through this surgery and through each and every day until he takes Gage to be with him but....I still feel my heart break into a million pieces and I feel the air leave my lungs to the point that I dont even realize I am holding my breath so that I dont completely lose it...I see in the doctors eyes their sorrow for what they have to say, and I see the residents look down at the floor trying to look anywhere but at Gage. I know on some level that we are not the only ones they have had to say this to, and they will say it to someone else after us. I pray.




The MD wanted to place a tube in his nose to feed him with until after the surgery but Beth promised to feed him as much as possible until the surgery to maintain his weight. He is going to have the surgery on Oct 9th and will be in ICU and then the floor for a couple of days. He will have to be cut to have it placed and not use the endoscope because he is so little...it is safer. We have to go Sept 21 and 22 for testing and Genetics and Neuro and pre op. So we have arrangements to be made-hotel, jobs, who goes and who stays....When we arrived back to Plymouth just to end the day, Gage decided to have about 2-3min hard seizure....I suppose this was just to keep me on my toes...Please continue to pray and thank you for all you do and you have done.....it helps knowing there are people praying for us as we travel and deal with these MD appts. I know that this valley in life the Lord will take us through and the sunshine is just ahead...I have to believe that OR have myself committed to the insane asylum. Love Aunt Kim