Doctors Visits

Hello! As promised, an update post doctors visits. 


First of all, on April 13 Tristan had his GI appointment. He last saw Dr. John Stephen 7 weeks prior with the weight of 20 lbs 2 oz. On this visit, Tristan's weight was 22 lbs and 4 oz. So a 2 lbs and 2 oz gain in 7 weeks! That's a lot of weight! Dr. Stephens was delighted with the weight gain, but concerned how Cardiology would feel about it. Worried the rapid weight gain might be too taxing on the heart. There are no signs of edema or swelling. Tristan has a nice round face and even carries a little pot belly. Dr. Stephen's recommendation was to drop down to 16 oz of Pediasure 1.5 and 8 oz of normal Pediasure per day (total 24 oz). Plus, start pushing the solid food intake. He requested we come back for another follow up visit in 12 weeks. Due to his vacation and such, we are returning at the end of June (28th). As Ann was leaving, he complimented us on how well we've done with Tristan both with the feeding and also with the parenting of a cardiac child. He talked about how many of his chronic condition kids seem to rule the roost. When they come for a visit, he said the child destroys the examining room and pounds on his computer while the parents sit there and say nothing. He appreciated the fact we use the word, "No" and were engaged with Tristan. As parents, we feel under the microscope all the time. It was nice to hear some encouragement and positive comments.


Today, we had the cardiology appointment and saw Dr. Marshall Lewis. Tristan had not been to the cardiologist since late December 2011. The good news is that Tristan appears fairly stable. His oxygen saturation was 82% for his foot. His blood pressure was good. The echo cardiogram from January was read by colleague of Dr. Lewis and she noted that there was moderate Tricuspid Valve Regurgitation (TR), but Dr. Lewis said by listening to Tristan via stethoscope, he could not hear it. Of course the echocardiogram would be more accurate, but the good news is that it can't be all that bad if it is not heard. Dr. Lewis is concerned about the rapid weight gain. We told him about Dr. Stephen (GI) plan to decrease the amount of Pediasure 1.5 to 16 oz per day. Dr. Lewis suggested we completely go back to regular Pediasure. A phone call has been made to Dr. Stephen's office informing him that his concern was accurate. We are awaiting to see what he wants to do now. Plan: Another sedated echo in July with a follow up appointment with Dr. Chandrasekhar (the cardiologist that has seen Tristan the most lately) within a week. If Tristan is stable, the plan is to then stop the Digoxin, increase the Aspirin and follow up every 3 months. The third surgery (Fontan) won't happen for another year or so.


As you can imagine the slowing down of weight gain is a complete 180 degrees from what we've been working on. For the past 22 months all we've done is focus heavily on getting weight on Tristan. First it was enough weight for the second surgery and then he was diagnosed with failure to thrive. Mentally, the concern about gaining too much now is understandable. We don't want to make is cardiac load too much for Tristan's weak heart, but at the same time it is hard to change one's thinking. For so long it was EAT, EAT, EAT....WEIGHT, WEIGHT, WEIGHT....


Truthfully, in some ways it is relief. The stress of getting him to drink the Pediasure 1.5 has been weighing so heavily on us. The pressure at times can be overwhelming. The thought of perhaps backing off on some of the Pediasure 1.5 to perhaps 18-20 oz per day and maybe really focusing on getting him to eat regular table food would be a good goal. But we await to hear from GI before we change anything.


Yes, there are many ups and downs with having a cardiac child. We're learning to roll with the punches and do what is best for Tristan. One big grin like the one in the picture, makes it all worth it!


On another note, Gene's parents are in town for the week to help out while Gene is in Orlando for a conference/seminar. Life is always better when Granny and Paw are here....Tristan had not seen them in a couple of months, but he picked up where they left off. All smiles and laughter....Can you hear the giggling from here?