The possible bug

I'm on the computer at PCMC while Severin is being held by his nurse. I thought I should give a bit of an update. Severin has an infection in his blood. They are calling it a staph infection. I guess there are varing degrees so we will wait until more "bugs" grow in the dish, and make sure he is on the right antibiotic. He will be here for 4-7 more days, depending on the antibiotic time needed. This has to be treated with IV antibiotics. He is running out of veins. I could do IV treatments at home BUT hat would require a central line (PICC line). It would go into his heart right where they just did surgery. I'm not willing to risk it. He may end up with IVs in his head before we are through here. He is not back in CICU though yeah! Well I had better eat that is what his nurse told me to do.

Severin is still running a temp. 99.8. They are adding an antifungal to his other two broad spectrum antibiotics. His inflamation is increasing, but the cultures are not growing anything. Still no idea what is going on inside. He is eating,pooping, peeing. He probably should do more, but its ok. His vitals are stable other than the fever. Great! Annie just said he was gram positive. Now we are hot on the trail of this bug! Now it is a process of elimination. I'll update when I can.

Thom stayed and Severins fever is 100.2

I am so glad Thom stayed. It has not stopped snowing. And it's great to have some one to trade off with. Severin wants to be held nonstop. I would too if I felt like he does. He needs to stop holding his breath, it doesn't look good on the monitors. We will fake sleep tonight.
Thom keeps him entertained with the mobile. That only lasted 10 mins. We just try to keep him comfortable.

We are here and...

We made it through the snow storm. Severin is still running a fever of 102ish. None of the cultures have revealed what is causing the fever. He has had three doses of antibiotic. I don't know what the defining point is when they send him back to ICU. I can feel the rattle in his chest when I hold him. I'm trying to do percussions (patting on his back) to break up any mucus. He needs to poop, he has had a suppository. He just farted so I think it is on its way. Stinky! We are wearing masks tp protect us from him and him from us. Because we do not know what is going on in side of him. Thom is going to try to get to the kids.

This is how we left him last night. I decided to come home with Thom. Do some laundry, shave my legs, sleep in MY bed. Severin is still a little drugie.
When I called to check in this morning, things changed. Severin is running a low fever. His lungs are not sounding clear. He is not eating very well. They are checking his blood for infection. I'm waiting to hear back on that. We are packing up again, and heading out into the snow. Say a little prayer for our Boy.

I know I'm late, but I have pictures!!!

We were able to hold him this afternoon. He is still pretty loopy as you can see in the picture. He has had a lot of sedation today. Echo, blood pressure too high ect. so because of that he is not eating very good and no poops yet. He really needs to eat his usual amount and POOP. I really do not want to go back to a feeding tube. Hopefully he is just tired. His pain seems to be better controlled once they decided morphine did nothing but make him itch. Poor baby I thought he was going to rub his face off. When they removed his RA line (the one in his heart) he bled a bit, so they left the chest tube in. He should be able to go to the floor tomorrow. Thats the last leg of this hospital journey. We were leaving and to my suprize in the lobby was Ken and Kamie Harris! I had talked to her yesterday and I thought she was still in CA! It was sooo good to see her and visit for a bit. I'd like to believe she came all the way from CA to see me but I know it was for Thanksgiving. The joy of good friends. Thank you for your love and prayers they have been floating us along!

A very GRUMPY Baby

Severin is doing as good as can be expected. I decided I would go with Thom and sleep at the RMH, and not in the hospital. Severin is really grumpy. They are trying to find the balance of sedation and pain med management. He cries but without a voice. He flails his arms and legs. He was able to come off the vent. at 7:30 so at 11:00 we tried to give him some pedialite. I think it hurt his throat. Then he cries and that hurts his chest, and around he goes in a vicious cycle. He just wants all the junk out/off of him, and be held. The Glen procedure replumbs the pulmonary artery blood flow. Now the blood comes from his head and into his lungs. Changing these pressures, through surgery, causes headache, and discomfort. It will take his body a few days to balance it all out. The amazing thing is that the body CAN and someone figured it out so now my son can live! His nurse said tomorrow will be a better day, and I hope it is.

Talk with Dr. Kaza

Just as I was making that last post, Dr. Kaza walked in. He is very confident in the surgery. Severin is an otherwise healthy baby. He's fat, and that is a good thing. He should recover quickly. We can go and see him soon.

Surgery day!!!

The hand off to the Anesthesiologist. Severin had fallen asleep, he opened his eyes just long enough for me to give him kisses. It was alittle different this time. He didn't have any IVs. He will have so much going on when I see him again. They took him back at about 8:15 am. By 10:45 they were able to start the procedure. By 1:15 it was complete. Now we wait for him to come off the bypass, and stabilize. We will talk to Dr. Kaza about the procedure and then wait 20 mins or so before we can go to the CICU and see him. He will probably still be on the ventillator. No holding because he will still have lines going into his heart. Hopefully he will be able to eat by tomorrow-A Thanksgiving Feast! The lines and drains should come out soon. Daddy, Mommy and Severin just waiting our turn...

we are here

We beat the storm and are now at the Ronald McDonald house. My new home away from home. The kids are safe, the dog is at Grams,the fish have a feeder, the birds have a full dish. I think that is everything. Severin is scheduled for 8am. Even if Dr. Kaza has to snowshoe in. That might be true....

Heart Cath 11/22

Heart cath took half the time as expected. Severin was a very good baby. There is a slight change in the surgery on Wednesday. Severin has a narrowing in his left pulmonary artery. (not where the shunt is) This will be repaired with a patch like his coarch was. The hope is, when the body heals in this area then it will not constrict again. They will remove his BT shunt and replace it with the Glen procedure. His aorta also has a twist in it that they will monitor. Just proving once more that Severin IS a unique snowflake. We are home for tonight. I came home to dinner and my kids well taken care of. Thanks #1!

Testimony in song

I went to a nephews baptism today. The opening song was the Hymn " I Know My Redeemer Lives" I made it until the 5th verse. "He lives to silence all my fears, He lives to wipe away my tears, He lives to calm my troubled heart, He lives all blessing to impart." I was sobbing. I have so much fear right now, I cry everyday, Oh how my heart is troubled for my sons troubled heart, and yet I ask for His blessing. I know My Savior knows how I feel right now. He knows my concerns. He knows my pure intent. He knows my deep love for my son. He lives, therefore I live, and my son will live. This is a very hard time for me to be vulnerable. I'm usually the giver, it is humbling to me to receive. This is a very "growing" time for me. To excercise Hope is to exercise Faith. I am begining a week of more growth. I ask for all of our faith to unite for Severin. Give our family the strength to endure this growing season. My Thanks to you.

Weight Check 11/18

When the nurse (Heidi) came to weigh him, I changed his bum, gave him a kiss and said "14 Sevie, 14" and laid him down on the scale, and crossed my fingers. Heidi started laughing "14.00" He is right on 14 pounds! Oh he is such a good boy!

Check out the beautiful Heart Mom Poem

I know I'm cool

ok so I was tired of everyone having a cooler blog then me. So I started clicking around and look at what I can do! I'm really proud of my techno "skills." Who knows maybe I will just keep changing it up for my entertainment!
Loves, Ang

Weight check and yummy rice cereal

5oz. weight gain! 13.8 ! I don't know if he will reach my goal of 15 pounds by surgery, but we're still working on it.
Severin tried rice cereal tonight, we waited for Daddy to get home. He didn't think anything of it. He even opened his mouth for the spoon. I know it feels like I'm rushing him to grow up, I'm not. I just want him to be familiar with a different texture and taste before surgery. Being intubated can cause all sorts of oral aversions. I didn't want to introduce foods after all the post traumatic stress of surgery. He has a little on his lip, don't worry he worked until he got it in.
I hope he likes it this much tomorrow.

Surgery Date

I heard back from the Surgeon today. Severin is on the schedule for Wednesday November 24. Looks like Thom and the kids get Thanksgiving at Chuck-A-Rama or Rainbow Cafe. Hopefully the kids' school schedule won't be messed up for long. The expected hospital stay is 1-2 weeks this time around.

Quist Halloween

Johnathen as Batman (again) He was so funny he had three different costumes to choose from and he just couldn't decide. He missed trunk-or-treat because he took so long, throwing a fit. He realized he was setting a mood for the littler ones so he put on his happy face for the picture.
Neleh the Butterfly. She loved her costume and told everyone what she was. The best part is she is wearing Halloween pjs underneath that glowed! She would not smile or hold still for a picture. This was as good as I could get. What a grump! She cheered up after she figured out there was candy involved.
Severin as a Tiger. He followed the example of his older Brother and Sister and grouched out. Everytime I tried to take a picture he would turn his head. So I held his head and this ticked him off. My mom made this costume for my oldest sister over 40 years ago. Every child or grandchild that could fit in it at Halloween got to wear it. This year Severin had the honors.
If I had a picture of Me and Thom you would see our patience was spent before we ever left the house. Why do kids make having fun so hard? Thom took Johnathen and Neleh around his parents neighborhood and they got plenty of candy.

Weight check and Heart Cath scheduled

Severin weighs 13.3, a 3 oz gain. I want him to be 15 pounds by surgery time.
It has been two weeks since Dr. Su did the orders for Severin to have a Cardiac Catheterization (heart cath) The Cath Lab had not called me, so I called them. The soonest they can fit him in is the 22nd - there goes my hope of having his surgery on the 19th. Dr. Kaza (Severins surgeon) is out of town until Monday. Then I should be able to schedule a surgery date. I was able to plan and prepare for his first surgery. I just want to have a plan for this one too.