Tuesday, September 25, 2012

Munchkin medical update.

 I realized its been a while since I did an update on Jax and the princess.

Of course Arina is easy. She's healthy and happy. I do think she occasionally still refluxes because we'll find spit up on her and the floor from time to time. (Yummy!)
She had a genetics appointment today, basically to tell me what I already know, that she has Down syndrome! Since we don't have a chromosome workup from Ukraine, we have to get one here to use to verify her diagnosis. I fully expected this guy to tell me that he believes she does indeed have Down syndrome, and proceed to show me her markers! But I think when he saw Jax he realized that I'm already a momma in the know! I am interested to see what kind of DS she has, because Jax has translocation, a more rare form of Down syndrome.

For once there is not much to report on Jax. We had our whirlwind of doctors appointments in August so September has been fairly quiet. His heartrate is still up, so our cardiology appointment in October will be a stressful one to see if his heart or PH is being naughty. I'm wondering if letting him off oxygen so much is making his heart work harder, even though his sats stay good.
Also he's been having problems with his airway closing off. I always think its a plug in his trach, but don't suction anything out. Even if I change his trach it doesn't help. Either he's having another bought of airway flopping below his trach, or he has scar tissue down there that is obstructing. We have a call into ENT to get her advice.
He had a CT with contrast of his neck and chest right before we left for Utah. All I know right now is that it doesn't show any active clots. That doesn't really help me any because we know that he hasn't clotted since starting the lovenox. What I want to know is how his veins in his chest are looking. Since he clotted all the major veins off, he has collateral's that are just a traffic jam of blood in his chest! We'll get to see the CT at our follow up with Hemoc.
GI-wise he's been pretty good. Still has his boughts of retching once or twice a week. His belly is a bit distended, but this started when the airway problems started, so my guess is because he's breathing faster his tummy is getting extra air. He tends to gather a ton of air in his belly when he breathes fast!
Jax may also be going to school for the first time! His ped has approved it, and I really feel he'll benefit from being outside the walls of our house, with other people to interact with. I may yank him the first time he gets sick, but its worth a try!
With Arina starting preschool in a couple days, I may actually have time during the day when I have NO kids at home! What the heck am I going to do with myself? Probably wander aimlessly around the house, or sit in a corner rocking!

Arina is so funny, she LOVES the Disneyland buttons. She knows just what people she needs to lay the charm on to get a button. We usually leave Disneyland with multiple buttons, and I know we have over a hundred in our house. She has one or two or ten in her hands at all times. Who needs expensive toys??


Michelle said...

Do you think that maybe he just has a plug deep in his lungs that gets moved around? Lillian had that when she had her trach. School, oh mercy, I'm a train wreck with school stuff...lol. I think it will be great for Jax, but I am with you on the sick part.

Alaina and Kyle said...

We're going to have to make a trip down that way to visit Disneyland. I'm sure Beau would love it!

Shelly Turpin said...

school? wow! that would be huge for Jax!