Tuesday, July 24, 2012

Coming out of the bubble

Jensen had his first trip out into the real world this weekend! We decided last minute to take a trip to Virginia for my family reunion. This was the first time my family got to see Jensen. It was a 5 hour drive and little man did great on the trip! Only my parents and sister know about our plans so it was a great surprise for everyone to see us at the reunion! My nana only cried about 4 times! Jensen also got to meet his cousin Adison, who is just a few months older than him. They were pretty stinkin cute together! I was so happy to introduce Jensen to everyone who have spent so much time praying for him and reading about him. He's our little celebrity ;) It was great seeing my family but I felt slightly panicky all day and my BP was definitely way too high. I'm so worried about him getting sick. I do want to get him out more and this was our first GIANT step in the right direction. 

We drove from my parents house in Kingsport to Chapel Hill this morning for Jensen's neurology appointment. After driving several hours and getting to the clinic an hour early, we had to wait 1.5 hours for the doctor to show up. We spoke to him for all of 10 minutes and the appointment was over. That was incredibly frustrating after such a long weekend, but oh well. We discussed weaning Jensen off of his phenobarb because it is a large volume and he's also on Keppra for seizures. We are hoping to decrease the meds he takes daily because we believe they are suppressing his appetite. Dr. Tennison wrote us a wean plan and he will be off phenobarb in 6 weeks! The scary part is, we don't know how he will do without that drug until we try it. So we will be carefully monitoring him for any signs of seizure activity. Dr. Tennison also wants to hold off on any imaging until we have more reason for it. 

Let me explain a little about radiation exposure:
In the hospital Jensen had x-rays daily, which is normal for a post-op heart baby. It is necessary to monitor fluid and the status of his lungs post-extubation. Once his team was a little more comfortable with his lungs he went to having x-rays every other day then eventually they were only ordered as needed. Jensen also has had multiple MRIs, cardiac caths, fluoroscopic swallow studies, fluroscopic stomach scans, and CT scans. All of these add up to a lot of exposure to radiation. Of course his doctors weigh the risks of exposure vs benefits of medically necessary procedures, but now that he's more stable, limiting radiation is more of a priority. 

All in all, the neurologists were happy with Jensen's progress despite his extensive history. They were pleased to see him wiggling everywhere and smiling and playing. He is definitely one amazing little boy and has overcome so much in his short 5 months. We are so proud of him and can't wait to see what amazing things he will do next!

I'll be posting pictures once we unpack our car load of baby gear and I find the camera amongst the mess!

1 comment:

  1. I believe it is hard taking them out of the "bubble" the first time. I know it was for us with Olivia. You are so afraid of germs and catching a cold or something. But they have to live and enjoy life. We pray and pray that nothing goes wrong and as a HLHS parent, grandparent or family member you alwyas hold your breath. But you start to let up a little and really enjoy them enjoyng life. So enjoy and let the family and friends enjoy him too.
    Sheila Allred, Olivia's Nana another Heart Warrior.