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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, January 7, 2014

A busy day

This post brought to you by the letter Zzzzzzzz! Oh wait:) 
Thanks to all the helping hands today! Dropping the girls off at various helpers and driving up to the hospital started rather early this morning. But we made it on time and we even ran through a drive through for a breakfast. That is a rare treat! 
First on our list of appointments was an Echo! When we saw Bell come through the door asking for Alex we knew the day was a good one! We love her and she does a great job at making Alex feel comfortable. If we could pick her for every Echo we would! Then we moved his exercise tolerance test next instead of after clinic. I wasn't aloud in.. Probably because I would push him to do more than what was needed or he would think I would let him bend rules. My kids tend to start to fuss with me around but have them do something when I am not there and they will go the extra mile. He did great and it was very hard. We met with Doctor Su who went over the Echo findings and the tolerance test. Doctor Su is probably the coolest cardiologist there... In case anyone was questioning that. The clot/stagnant blood in his LV couldn't be seen anymore. That means that the Lovenox is doing its job. If it is there and only visible by TEE then it is smaller. He will need to remain on anticoagulants because we don't want it all to reoccure. His function is still very poor. The exercise tolerance test reaffirmed our need to move forward with transplant. I was hoping somehow those drugs had kicked in. While they are bandaging things right now it isn't solving the issues. They like kids to be at certain percentials... At best in the 90's or even 80's( in a heart babies case). Alex is in the 50's. With all that physical energy it seems like he shouldn't need it to be higher. It affects him differently I think... This is just me, but it takes energy to focus on tasks and remember things, to make good judgements and to choose sympathy over selfish desires... I think those are the things it affects in him. We are teaching him.. We will be viewed as too strict or not strict enough... Alas, we are trying. In fact you will catch me reading about how to teach gratitude, graciousness and thankfulness all completely different things. Then because we were there and so handy dandy, I visited with transplant. Questions answered and date set to start the parental evaluations. 
We went to the Rainbow Cafe for lunch... Gator referred to it as a date:) I thought it was hilarious, "lemme carry that tray for ya mom, sept it's kinda heavy... Here you better take it back" 

Off to the lab for blood work and a Xa... Gator was not looking forward to this at all. He doesn't like it, lucky for us our friend Chels was there. If anything she made ME feel better. She did such a great job because it only hurt a little. Chels used to hold Gator for me so I could snag a shower when he was a teeny baby... The other tests were for transplant. Blood typing and a PRA... Because we have so many heart friends many of you will already know this.. Feel free to skip the next paragraph... For those of you who are joining the heart world for the first time here is an explanation. 

PRA means Panel Reactive antibodies... It tells doctors if and when a heart becomes available, that Alex's body wouldn't recognize it right away as not his own and start fighting or rejecting it. They show how sensitive his body is to change. If this is number is high it makes getting a new heart tricky because we can only accept a heart that his body wouldn't try to get rid of. That means he would wait longer to get a new heart, because just the right heart would work. We can use medication called IVIG to trick his body if we find that it is very sensitive. We won't know the results of that test until later.

Last appointment was Neurology, stroke clinic. Best news from this appointment. There are no lasting/lingering effects from his strokes. We don't have to go back unless he had another. DONE and DONE!!! We drove home to pick up our girls... It was such a big day this is what happened....


I missed Eden's observation day at dance class so she gave me a personal showing of her dancing skills!!! 



I can't keep my eyes open any longer! Jeff just walked in from Bishopric duties so we are off to bed! 


1 comment:

likeschocolate said...

Poor kid! He is totally tuckered out! Happy you have such awesome doctors taking care of you!