Johnathen has decided he likes playing catcher. He is getting good at it too. After the first game he was getting in the tub complaining about how bad his knees hurt! We will work on that...
Tuesday, May 29, 2012
T-ball and Coach Pitch Season 2012
Monday, May 7, 2012
Cardiology Appointment May 7
Welcome to My Emotional Roller Coaster, please sit down, put your arm around me and hold out the box of tissues. Be prepared for a lot of tears, snot, and inaudible mumbling...
With that being said, Cardiology was not the appointment I had hoped for. Severin weighs 24 pounds-a loss of 1 pound since his heart cath, and O2 sats of 73% down from 83% post stent. What is going on with my guy? We can hope for a virus to explain his decrease. How sick and twisted is that!? But Dr. Su thinks it is something called Pulmonary Arterial Venous Malformation- PAVM for short- thank heavens for the "short". Here is my best explanation I can come up with from Dr. Su's explanation and now my research with Dr. Goggle, is the liver sends a protein or an enzyme ( no one really knows) that makes the Pulmonary Artery need to connect to the Pulmonary Vein. So it is like a collateral in the lung. Any who this new junkie vein attached to Sevs Pulmonary Vein and Pulmonary Artery is making it so the unoxygenated blood can't get completely oxygenated before heading back out into his system. Hence the 73% sats today in clinic. But he also had some signs of this in his heart cath. When they measures the O2 sats in the vein his were only 88% when they should have been 100% because they just came off their trip to the lungs. The only way to treat/fix this is to add blood flow to the Pulmonary Artery through the Fontan Procedure. Although this is rare and uncommon for kids Sevs age, it is not unheard of. I am still yet to hear "there is nothing we can do about this." So the current guess is Severin will have another open heart surgery this fall. Before the bugs flood the hospital. He needs to gain weight-period-end of discussion. I am calorie packing him every way I can. Pray that we can chub this kid up fast enough, before it becomes a problem for his heart to be in its current state.
Up side he only fussed a tiny bit for his chest X-ray, and not at all through 3 blood pressures, and pulse ox testing. He was being such a BIG boy! Sorry no pictures. After the appointment we went to the park with some Heart Buddies, good way to end the day.
With that being said, Cardiology was not the appointment I had hoped for. Severin weighs 24 pounds-a loss of 1 pound since his heart cath, and O2 sats of 73% down from 83% post stent. What is going on with my guy? We can hope for a virus to explain his decrease. How sick and twisted is that!? But Dr. Su thinks it is something called Pulmonary Arterial Venous Malformation- PAVM for short- thank heavens for the "short". Here is my best explanation I can come up with from Dr. Su's explanation and now my research with Dr. Goggle, is the liver sends a protein or an enzyme ( no one really knows) that makes the Pulmonary Artery need to connect to the Pulmonary Vein. So it is like a collateral in the lung. Any who this new junkie vein attached to Sevs Pulmonary Vein and Pulmonary Artery is making it so the unoxygenated blood can't get completely oxygenated before heading back out into his system. Hence the 73% sats today in clinic. But he also had some signs of this in his heart cath. When they measures the O2 sats in the vein his were only 88% when they should have been 100% because they just came off their trip to the lungs. The only way to treat/fix this is to add blood flow to the Pulmonary Artery through the Fontan Procedure. Although this is rare and uncommon for kids Sevs age, it is not unheard of. I am still yet to hear "there is nothing we can do about this." So the current guess is Severin will have another open heart surgery this fall. Before the bugs flood the hospital. He needs to gain weight-period-end of discussion. I am calorie packing him every way I can. Pray that we can chub this kid up fast enough, before it becomes a problem for his heart to be in its current state.
Up side he only fussed a tiny bit for his chest X-ray, and not at all through 3 blood pressures, and pulse ox testing. He was being such a BIG boy! Sorry no pictures. After the appointment we went to the park with some Heart Buddies, good way to end the day.
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