WARNING: THIS IS A LONG POST
It's been an exciting couple of months. And the end of May Ann's Mom and Step-Dad came into town for a long weekend. It was great to see Tristan take to them so quickly and loved to be around them. I am fairly certain the feeling was mutual and both parties look forward to seeing one another again in September.
Next, Tristan had a "big boy" milestone of getting his first real hair cut (outside of mom and dad cutting it when he was sleeping). The woman/hair dresser was so kind and understanding. Tristan sat on Gene's lap while Ann tried to keep him distracted. Distraction was a HUGE fail. Tristan is VERY defensive to anyone touching him that he does not know. The hair cut took all of about 15 minutes but he managed cry himself into hysterics and vomit all over Gene, himself, the chair and the floor.....3 times. The lovely ladies tried to make Tristan happy by offering stickers and lollipops, but Tristan wasn't having any of it. The end result was the revealing of a little boy under all that shaggy hair, which was nice to see. Although we will be more than happy if we don't have to do that again for another 2-3 months.
Father's Day was a nice quiet Sunday. While Tristan slept we got our annual Gene and Tristan hand picture. Tristan is not so cooperative so we had to resort to doing during nap time. Makes me look forward to our annual Thanksgiving card--NOT. Oh well, maybe by the time he is 2.5 years old, he'll be more cooperative. (Yes, I am snickering too).
A week ago we were in Lake Mary, FL for the FL/GA District Convention. It was a very rainy weekend thanks to Tropical Storm Debby so there was little sight seeing by Ann and Tristan. The weekend went by so fast that Ann was not able to see many of the Pastor Wives (PWs) that she wanted to. Perhaps in October when we go back for another conference there will be more visiting. On a positive note, Ann got to share how she and Amy came to the US and give a cheer for Lutheran Family and Children Services. If it made one person realize the importance of Lutheran Services and Outreach, it was worth it!
And finally...the dreaded doctor visits. We had a cardiology visit this past Friday. Tristan had a couple of days of 4+ vomiting, poor urine output, and not even wanting water (which he loves). His energy level was good and his mood was not poor so we kept an eye on him. After a couple of days of this, we got a little nervous and called the cardiologist. We already had the schedule appointment for Friday, so the decision was to keep an eye on him and bring him in for the appointment. To say that Tristan was a mad man is putting it nicely. He started screaming from the moment we walked into the examining room. We could barely get his weight and height. Getting a 12 lead EKG was out of the question. They started putting on the leads and stopped because Tristan started vomiting from screaming so hard. Bottom line, the cardiologist was happy with his heart function from what he could tell. His O2 sats in his hands were 83-84% on room air. The cardiologist was happy with the way he looked but once again talked about Tristan's slow weight gain. The third open heart surgery is always looming and we know we need to get Tristan to the 30-35 lbs mark. Dr. S talked about perhaps putting in the G-Tube. It is completely backwards from the norm and he admitted it. Most babies are given G-tubes and then it is removed around 2-2.5 years of age. Putting in a G-tube in a 2.5 year old is almost unheard of. He even admitted he could not remember the last time they suggested it with a patient at Tristan's age. Dr. S knows we see a GI doctor down the hall from his office but suggested we get a second opinion from Miami Children's. Our current GI doctor wants us to avoid the G-tube as long as Tristan is gaining weight, no matter how small. Dr. S wants to see if another GI doctor agrees.
On another note, our Speech Therapist quit working for Early Interventions, so we are awaiting to hear about a new Speech Therapist. There is a woman who is known for working with children that have oral feeding and speech delays and working wonders. The bad news is that she is out of net work for Blue Cross Blue Shield. So the process of getting Tristan in to see her is going to take some time with all of the paper work involved between insurance and the state. UGH.
Today, Tristan had his scheduled GI appointment. Truthfully we were nervous. Our hope was for Tristan to be around 25 lbs. Weight today was 23 lbs and 2 oz. Height was 33 and a quarter inches. He gained 1 lbs and 1/2 inch in height for the 10 weeks. I was sure Dr. Stephens was going to ream us. The complete opposite happened. He felt Tristan was gaining and looked proportional. He felt the slow down of weight gain is normal for a 2+ year old and was happy with it. We talked about trying to use Benecalorie to add more calories and working on getting Tristan to eat more by mouth (solid food wise). Dr. Stephen's did not bring up the G-tube. We had an open dialogue about expectations of weight gain with two parents that are no giants by any stretch of the imagination. Wanting Tristan to be 30 lbs right now might not be realistic and Tristan could be fighting genetics. Dr. Stephen's agreed.
So what's next??
This coming Friday, Tristan has a sedated ECHO scheduled. If the ECHO looks good, we foresee him coming off of the Digoxin until after the 3rd open heart surgery. It would be nice to have one less medication to force down him.
After thinking long and hard about it, we think we are going to make an appointment with a cardiologist at Miami Children's. Why? Just so that someone down there has a look at Tristan and is up to date on everything. They will be doing the 3rd surgery so it might be nice to see what they have to say. How do they feel about Tristan's weight? What time table do they see for the Fontan? If they are not happy with the weight gain, then we will move forward to seeing a GI doc for a second opinion in Miami. Ann is going to wait until after the ECHO on Friday to make the appointment. The hope is that the ECHO films can be sent down to Miami Children's prior to the appointment so Tristan won't have to go through another one and they can have all the info needed to give us a good impression of Tristan's heart function.
We'll be sure to update again once the ECHO is done and when we have the results.
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