Friday, November 14, 2014

Not so simple

What to say??? All I can do is kind of just laugh... I mean seriously what two year old gets gallstones? So here we are inpatient at Phoenix Childrens. Brody was experiencing back pain for about two weeks, we kept stalling to come in just because of what it would entail. Couldn't be avoided. We were in the car running errands and Brody just started screaming in pain, then he acted like he was going to vomit, then he passed out in my arms from pain. He was ok but scared me so right to ER we went. 9 hours later we figured the gallstones out by abdominal ultrasound... Belly X-rays, back X-rays and all lab work were normal.  We were admitted and told surgery would most likely happen. On that note I was prepping myself saying he's been through so much this will be easy.... Apparently not. After a very long day of going around and around with cardiology and gastroenterology and surgery it was a final consensus of risks outweighing benefits , I absolutely agree. Brody is perfectly happy besides the bouts of pain here and there. Of course the stones can cause more potential problems, serious ones, liver and pancreas damage. Brody needs his organs to stay as healthy as possible so he will be able to be a candidate for transplant. So on that note, what to do??????? With all his issues with the mechanical valve, being on coumadin( blood thinner) and just the recent past he's endured he will need to have all input from his entire team east coast team and west coast team to make the best decision for Brody. 
During a laparoscopic gallbladder removal there are usually four puncture sites in the abdomen... They inflate the abdomen with air to help visibility to see the gallbladder, pretty simple. EXCEPT the pressure in the abdomen will change the pressure if his one pumping chamber putting him at higher higher risk! Not to mention there is a 50% increase in the occurrence of thrombus ( blood clot) 6 months after a mechanical valve has been put in. Again another huge factor for Brody since is valve is new, and since they will be playing with his INR for the surgery... INR tells us how thick or thin the blood is... Brody's blood needs to be much thinner than ours due to the valve preventing thrombus hence why he's on Coumadin. But for surgery it can't be to thin.. The gallbladder has to be slightly separated from the liver, again another risk of bleeding for Brody.  We talked to CHOP and Brody needs to be evaluated by a Fontan ( last surgery Brody had) liver specialist to evaluate his liver before surgery. We will most likely head that direction in a few weeks to get this taken care of! 
Besides the pokes Brody is happy! He's loving all the attention and has made me do about 200 laps around our unit!
Other than this admission Brody has been doing fantastic.. Last echo showed a slight improvement in function which means the meds are working and his heart is somewhat trying to regain function. We are in the process of being established with the heart failure team at Stanford in Palo Alto, CA, since we have not been evaluated we will continue to see CHOP and have them manage Brody from afar until we bridge our care with Stanford! Whewwww! Hope that's not to much info!!
God is good every day!
Sister Charli came and stayed till 11 pm with Brody then was still a champ and made it to school and dance the next day! Seth was out of state working and made a 17 hour road trip to be here for Brody❤️❤️❤️ He is so loved!
Kiss the ones you love😍❤️😍❤️God is good❤️

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