We just got back from Miami Children's Hospital about an hour ago. Two out of three members of the Johnson Family are napping from the lack of sleep last night. We drove down on Thursday evening and stayed in a hotel because of the early morning appointment. Tristan never does well sleeping away from his own bed, so his parents not either. Thankfully, that is the worst thing I can say about the Cardiology and Dietician visit.
Just so we are clear, we went to Miami Children's to get their thoughts on Tristan's cardiac function. There is nothing that had us extremely alarmed or worried. As parents, we were getting conflicting impressions of Tristan's weight gain and need for intervention. Our local Cardiology office has 5 Cardiologists that rotate seeing the patients. One cardiologist was concerned about the slow weight gain and suggested a G-tube be placed. Another cardiologist in the office thought quick weight gain would be too hard on Tristan's heart and wanted us to slow it down. The GI doc wants to avoid the G- tube at all cost and felt Tristan was in a good place. We went to Miami to see their cardiologist because in the end, they will make the final decision when the Fontan (3rd surgery) will be done. They will be the ones performing the surgery, so their input is important. And finally, they had not seen Tristan since he was 6 months old. We decided it might be good for them to be updated and have a current medical status.
After a long day of sitting at the hospital, we came home knowing that Tristan is stable. In some ways it feels like the trip was not necessary because no recommendations were given, but at the same time we have validation that and an "estimated" timeline. With clothes on and no shoes, Tristan's weight was 25.4 lbs. He is in the 10th percentile on the growth chart. Looking at the weight and height ratio, Tristan is at the 99% mark. That means he is perfectly proportional. The dietician (the same one he had while inpatient), basically said to keep doing exactly what we've been doing. Keep encouraging the po (by mouth) intake and supplementing with the Pediasure 1.5. She thinks the G-tube is completely unnecessary and way over the top. She would only suggest the G-tube if Tristan dropped below the 3rd percentile for weight and height. Ann also asked about the Pre-Albumin from July. It was low despite the high protein from the Pediasure 1.5. Melissa (dietician) basically laughed it off. Said that the half life is so fast that without a series, the lab is worthless in regards to his nutrition status.
Tristan was completely uncooperative to get an accurate O2 sat, blood pressure or EKG, but our local Cardiologist had sent down the films from the Sedated ECHO we had in July. The films were re-read by the cardiologist at Miami Children's Hospital (MCH) and the impression is that the heart is stable for an HLHS child. There was nothing they saw that was alarming. Right now, they are in no rush to do the Fontan. Unless Tristan shows signs that he needs it, the 3rd open heart surgery won't happen until closer to 4 or 5 years of age. Something drastically would have to change for the surgery to come sooner.
So in the end, Dr. Dobrolet said to keep doing exactly what we are doing. She had no recommendation of changes.
We did get the chance to see some of Tristan's nurses on the cardiac unit. Tristan wasn't happy to be surrounded by nurses, but everyone remark on how good Tristan looked: his coloring, his size, his weight. I wanted to take some pictures of Tristan with them, but that was not going to happen. I was only able to get one picture of Tristan and his primary nurse Dafenie, but Tristan is crying and it's not very pretty.
Now onto better things.....we're all going to St. Louis next week for a family reunion on Ann's maternal side of the family. We look forward to seeing everyone and I am sure pictures and another updated blog to follow.
