Severin's 2nd Birthday

Oh My CARS! from Gma Sue and Gpa Fred

 

Elmo backpack from "Isle" Kyle

Drums from Bryan and Megan- that face cracks me up!

New Bike Sev says "myyy bike!"

 

He is really excited for his ELMO cake!!!

Severin's Birthday is a special Angel Anniversary for our Heart Buddy Aaron. We let white balloons with hearts on them to honor his 1 year Anniversary. I don't think we can ever celebrate Severin's life without honoring those who have passed on from this mortal life. We are so grateful to have had the past 2 years with our little guy. I pray we might be able to have many, many more.

T-ball and Coach Pitch Season 2012

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...

I don't know how Neleh ended up with a big shirt, but she still looks pretty cute! And the helmet covers her eyes. Best of all they are both number "8"

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.

What do YOU do when waiting for a surgery?

Severin swipes a firetruck and races down the hallways!

Heart Cath pictures!

So cute in his hospital outfit
This pict is pre op but this is the horse Severin later rode off into the sunset!
Post op slushies are the best! I had to keep Dad from eating it too!
Yep this is how we laid for SEVERAL hours
He would sit up, point to something on TV and lay back down

Heart Cath April 16, 2012

Our day started a few days ago. I try to control the things I can because I can not control anything to do with Severin's heart. So I was on a cleaning/cooking frenzy. Freezing meals and cleaning out the fridge. We had to be to the hospital at 8am, the cath was scheduled for 9:30 am. We kept Severin up until midnight on Sunday feeding him. He started getting a little nervous while we were doing the pre-op stuff. So we decided to give him a bit of versed. He mellowed right out. He was smiling at everyone and leaned right into the arms of the nurse. His cath took about 2 1/2 hours. They had to do a venous cath in his neck, this was to get a look at his Pulmonary Artery because since his last surgery it is no longer connected to the bottom of his heart. And a venous and arterial cath in his groin, to check in his heart. Severin's heart looks great. All the pressures make him a perfect candidate for the Fontan. He had a small collateral that was not big enough to coil. BUT guess where his problem was? That's right that pesky Left Pulmonary Artery! It had narrowed again. The right side had gotten bigger trying to compensate. After ballooning did not work a stent was placed making his LPA THREE times bigger. This stent will need to be expanded as he gets bigger. That procedure can be done in the cath lab. The stent looks like Chinese finger hand cuffs. Stainless steel, criss- cross pattern. This is considered "maintenance" for these little hearts. LPA narrowing is common in single ventricle, and also those who have had the Damus-Kaye-Stansel repair. He was a bit nauseous, and sounded croupy. He had to have 2 breathing treatments, and stayed on 1/4 liter of O2. Severin didn't have much of an appetite, but he was drinking enough. I asked them to turn off his IV fluids before his eyeballs popped out. He was getting quite the marshmallow head. They brought in a big bed so I could lay with him and keep him flat. He had to stay this way for 6 hours. His surgeon stopped by to see us, and discuss the cath results. He said this is what he likes to do before the Fontan, and then let their body adjust before surgery. Dr. Kaza and Dr. Grey both agreed this stent could buy Severin a year or more before he has to have surgery. That would be GREAT!!! We are setting a new baseline. At about 9 pm he perked up. He wanted O-U-T! We ditched the monitors, and O2. I let him walk around the post op unit. Then play in the pre-op play room, I think he rode a mile on the rocking horse. He found a police coop car that was missing its CB. So that started an official police investigation- to find the stolen CB! He was flirting it up with a teenage girl. He visited our new heart friend, she is only 4 months old but I think they are in love. She almost rode shot gun in the police car, but she was eating. We thought we had a new friend but his mom didn't want him to play. You can recognize the frequent flyers. We play together, the "nons" shut their doors and hide. We took a wagon ride on all 4 floors, we tried to go to the U but they were cleaning the carpets. Finally at 11:30 I had convinced him to watch the fish channel on TV. It is video of an aquarium set to white noise. The bummer is from 2-4 am it is outerspace/the planets and that scared him awake. As he slept his oxygen saturations were 83%! He hasn't been above 77% for a year. I discharged us to the Rainbow Cafe to wait for Dad and Neleh to make it through the rain storm. Our heart buddy Logan was there for his cath, so we visited with Brad and Heidi for breakfast. Since being home his appetite is not great, he wants to be held A LOT, and he needs oxygen a little more often than before. We see Dr. Su in a month.

Cardiology Appointment March 27, 2012

Cardiology was not bad but not good either. I'm not feeling to perky about this. Severin cried for his chest xray, I even tried to play peek-a-boo with him but it didn't work. By the time we rode the elevator to the 3rd floor Cardio Clinic and hooked him up to the pulse ox he was still sating 58%. Yep that SUCKS! He made it up to 71% after the nurse left. He weighed in at 24 pounds, yet another sucky bit o news. He has only gained 2 pounds in 3 months. Dr. Su didn't feel too worried about this. He thinks he is just running, playing, and being a normal little boy. Yes he is. He plays outside every chance he gets, and runs up and down the street with the other kids. But, I want him to play hard AND gain weight. So I have started giving him pedisure, ensure, carnation instant breakfast, you get the idea anything full of calories! We talked about the next move, a Heart Cath. I wanted the cath sooner then later. My hope is they can coil his collaterals, or put in a stent if his pulmonary artery has narrowed- he had 80% of his PA replaced in his last surgery. I just want him to get some good oxygen saturations, and gain some weight. So the Cath is scheduled for April 16. I have to hand my baby over to them. He will probably stay the night, and so will I. When I talked to Dr. Su about the family activities this summer and when the best time for surgery would be, I told him about Thom being gone in Sept. He wanted to know why I wasn't going with him. I said "have you met my son?!!!" Then he talked to me for the next 10 mins about how important it is for Thom and I to have a vacation, reassuring me how stable Severin is, and that now is a good time to go together. This isn't the first time he has mentioned strengthening our marriage. I do not go in squawking about my crappy relationship, because we do not have a crappy relationship. I am, however, thankful that he is willing to treat the whole family. Maybe Thom and I will go on a small vacation. For now we will "wait and see" what the next step is for Severin.