Christmas time!!!

The great anticipation on the stairs waiting to go up to CHRISTMAS!!!

 Oh Toothless Johnathen. He was soooooo excited

 She is REALLY excited about her new baby, she hasn't put him down

 Sevie Loves his ELMO- and bursts into song. Nanananut Elmos world!

 Johnathen got a DS, and "you can play it while it charges!"-J says  "oh goodie" mom thinks

 Just Dance Disney is a real favorite

cookie making 101

Neleh has a cookie exchange for her Preschool Christmas Party tomorrow. She is my "perfectly perfect" child for anyone who knows the story Mooseltoe. We have talked since last Friday about what kind of cookies to make. I was going easy breezy with the pretzel, rolo, m&m but no rolos on my ONE outing to Walmart. I guess everyone else had the same idea. I had her look through cook books. I told her about reindeer looking cookies- she needed me to "look that up" meaning google or pinterest so she can see it. Alas we decided to do roll out sugar cookies so she could decorate them.

Lots of sprinkles!

Then we even went a little more crazy and made "snow balls" with the marshmallows

We got this idea from Pinterest. I am thankful the 4&5 year olds these are made for will think they are great. These were way cuter on Pinterest. They are an upside down heart shape cookie, choco chip eyes, and marshmallow beard.  NAILED IT!!!! hee hee

CHiRp, cHiRp.....

Sorry blogity followers for the crickets chirping on here...
Here we are THREE weeks post Fontan. It is all a bit of a blur. Severin did really well for the first week home. He slept, ate, healed, his pain was under control, we were finding our groove. I made an awesome dinner on the 29th. I felt like me again, and I could handle my world.
Then the night terrors started, and a cough, and fluid positive, and zippo in the sleep department. Severin wakes up at midnight and stays in a delirious state of awake until about 5 am. Or if he somewhat stays asleep he wakes up crying out every 20 mins or so. He feels around to make sure I'm there, and then falls back to sleep. Of course I am sleeping next to him otherwise I would never sleep. His cough sounds like croup is coming but it has been 4 days and it hasn't gotten worse. On one of the "no sleep" nights he only got one dose of his lasix, after that his eyes are more puffy. His left eye was really red and blood shot looking. I thought he might have pink eye, so I started an antibiotic. It didn't seem to make a difference. Fluid retention is a common complication of this surgery. He is so grumpy. His sats are still 83-90 which is awesome. Cardiology wants post Fontan kids to stay above 85%.
Aside the normal Severin worry. My Sweet Grandma went to Heaven on Dec. 5, at the ripe old age of 91. I knew she was deterorating. The weekend before Sevs surgery she fell and broke her leg and her foot. I couldn't go and see her at the hospital, because I needed to keep Sev and myself very healthy. After her fall she stopped eating and drinking, and just slept. I was able to visit her a few times, and the Saturday before she died I spent a long time with her doing her hair, fluff and puff. She talked to me, it was a quiet voice, but it was good for my heart to hear her talk. I love her so much. I can only imagine the sweet reunion in heaven, she has been without my Grandpa for 20 years. I am filled with so much gratitude for this Woman, I was blessed to call her Grandma.

Post Op follow up

Dang it I forgot my camera! I do NOT do these early morning appointments. Anywho Severin checks out great! Xray, EKG, Blood Pressure, O2 sats 83-89 on room air, weight back up to 12.0 kg (26.45 lbs) They said he gets to kick the oxygen habit during the day, and take it down to a 1/2 liter at night. Weeeelllll.... that is what they say in every post op appointment. So I took Sev off the o's until we came home by about 5:00 his lips and finger tips were purple. Sorry I have seen my boy VERY pink for almost 2 weeks I was not about to let that go. For now I will wean down the O2, not be so freaky about him keeping it on 24/7, and let him keep healing at his own pace.
After clinic we met up with our Heart Buddy Jessica. She has HRHS like Sev and is 22 years old- same heart! She gives me a great hope and perspective of Severin's future. I am so thankful for medical advances, all she had to endure 20 years ago, made procedures easier for my guy today.
I have been thinking about something today.  I recently found out one of our CICU neighbors earned his wings and returned to Heaven. There is no rhyme or reason to which kid gets to stay and which one has to go. I sometimes even feel guilty that I get to see my son grow and others do not. This heart community is very unique population. We see many little ones leave too soon. We grieve with each other. We stand by each other for the entire journey. We celebrate little milestones, and remember "angel days". I know there is absolutely no scientific/medical reason Severin is still here. But yet he is. Not only here, but thriving here. I allow myself to dream of his future.  I know he will be here until he has fulfilled the measure of His creation. I hope his measure is longer then mine. He has great things to do on this earth. I, as his mom will make sure he has every opportunity to accomplish what he needs to do. I can only accredit faith, and prayers for sustaining our son and our family. One thing "Heartland" has taught me is perspective.

First day home

Severin took a 5 hour nap. I was really nervous and checked him constantly. When he woke up the kids were outside playing, it was such a beautiful day. He wanted to go out too. So I drug out the concentrator out on the back porch, and had his 100 ft oxygen tubing on. And away he went! He made it to the swing set, then to the road on his bike.

 

Thanks for the 100 ft of tubing! We even had JP and Soph over

He only got tangled up ONCE

Bath time!

He is holding his O2 on.

On Sunday Sevie got his sponge bath, hair do, lotion, and pjs on

 

oh yes he did!

FIVE DAYS!

 

5

Five Days ago I woke up after very little sleep, snuggled my boy and started the dreaded drive.
Five days ago I handed my sweet baby into the capable hands of two of the most brilliant men I know, and asked them to bring him back to me.
FIVE DAYS ago we sat for 5 hours waiting for surgical updates.
five days ago our sons heart was being "replumbed" in hopes of giving him a long life.

FiVe DaYs later our son is home!

Post Op Day 4

CHEESE!

Little Mister is not giving me much down time. He is pretty spunky. We are waiting for his echo. It was scheduled for 10:30 and then 1 and seems how it is 1:40 I just hope it is sometime today. If all looks good it will be our golden ticket outta here! Severin is eating, drinking, pooping and peeing. I'm wondering if they are keeping us here because he is so cute and entertaining. He loves the playroom and wagon rides to see the fish and train.We have to ride the train elevator to see the train. We have trains in the room. Medication wise he is on tylenol and motrin for pain. When he hurts he is grumpy and says weird places like his eye or armpit hurts-never his chest. He takes lasix twice a day. He hates it. It tastes gross even with flavoring. The first try the Nurse didn't flavor it and he barfed it before it even hit his tummy. He is on 1-1.5 liters of Oxygen, he came in on 1 so this is really no big deal. And he now takes a whole 81 mg Asprin instead of a half. The echo will tell us if he needs any heart meds. So we wait....

Blogger is being difficult, and not letting me post pictures

**PICTURES**ADDED**

Sunday update:

After Severin didn't have his chest tubes anymore I gave him a sponge bath and got him dressed into his Helicopter/Firetruck pjs. Then we went for a wagon ride to see the train downstairs, and the fish.

 I asked him if he wanted to go to the playroom-"no" but I took him into see anyway. As soon as he saw ALL.THOSE. TOYS. He was trying to get himself out of the wagon-danger! I helped him out, he was really weak and needed help to stand. After a while he could walk-a little tipsey, but the reward of getting to as many toys as possible kept him going. After falling down a few times he decided it was ok to sit and let me bring the toys to him. I can't even imagine the pain of falling on your bum with a healing chest. OUCH! He said he was hungry, which usually means he is thirsty. We went back to his room and I gave him a drink. He said he was hungry still. What? could he really be HUNGRY? So I ordered him a little bit of everything from room service menu. He was so excited to see chicken nuggets. He ate so good! It was like someone flipped a switch and Sevie came back.
The kids came to see him, it was a bit much for him, but he misses them. We have taken many wagon rides all around. He is able to sit up better on his own. He doesn't hurt as much to move him. We still snuggle lots- in fact that is what he wants me to do now, so this is going to be cut short. He is a stinker and takes off his oxygen. Then when he desats enough and the "dings" go off he will put it back on. He is just trying to have some independence in his situation.

Post op day 3

what's not to love about this little sleeping bunny?

hand twirling his hair, heart hugs hand touching his head so he knows it is there, bug close by so he can push it's button.

The Team just came past, Bonnie will pull the last 2 chest tubes today. Labs, xray and chest tube drainage all look dry. No more narcotics today and hopefully that will help with the barfies. Did I mention he has figured out the buttons on the bed? Oh yes we "ride" up and down all day long. I get a little motion sick riding shot gun. He has lost weight, which is super common, but let just hope for some calorie consumption today!

New mode of transportation

Xrays happen around 6 AM in here.  He gets to take a little trip downstairs to radiology. He really hurts when we move him, his torso is really stiff. DUH! When we made it back from xray he did not want to out of the wheel chair. So here he sits watching cartoons, falling asleep sitting up.... this kid! 

WE LOVE VISITORS!-healthy ones only of course....

I must do a post to THANK all those who have poured love upon us. We feel your prayers, and they are being answered. Everytime Sevie tells us "I love you Mommy" "I love you Daddy" words we only hoped to someday hear. It took me an hour and a half to read through all the texts, FB messages, and emails. Thank you for taking the time to let us know you care so much for us. We have had so many visitors, it has been awesome, and Sevie loves to see people. Our parents have held down the fort at home for us, so we could be 100% with Sev. My friend has taken over my cleaning gig so I could have the time off. My Heart Momma friends have kept us hydrated (water and "naughty juice" ie Dr. Pepper), and filled with treats. Not to mention it looks like Christmas in Sevs room! Lots of toys to entertain. We are so BLESSED! Thank you everyone, we know we will never repay your generosity. We only hope to someday pay it forward in your honor. We love you all!

Just chillaxin'

Remember how I was so worried it would hurt him to have his arms above his head? We had a bunch of visitors when we first came to the floor. After everyone left Sev and I snuggled up for a long nap. When Daddy came back with pizza (which Sev didn't eat) it was his turn to "nuggle". That is when the blog gets updated. Sevie has ate some goldfish crackers and held down 300 cc of water. He had to get a new IV. He barely fussed, what a Brave boy. Then the IV team entertained him by wacking eachother with his inflatable hammer.

Movin' on UP!

Good bye CICU Hello 3rd Floor!

When we told him he was moving to the floor, where his Brother and Sisters could come and see him he said "yeah, and eat pizza!"

Post op Day #2

*I added a picturethis is the miracle of medication*

Severin is not eating. This is good and bad. He needs to eat. Calories, healing process, removing chest tubes, tummy being awake, digestion, all these things a affected by his lack of food.  He barfed the bit of strawberry shake we talked him into eating. This tells me his tummy is not awake enough yet. They will pull one chest tube today, and leave the remaining 2 until he is eating better. He is his peppy self for an hour and then cries, or goes to sleep. When he is awake he talks and talks to everyone. His face is not as red/purple. When he cries it looks worse and his ears stay purple. Hopefully that will get better as his body adapts to the changes. They plan on moving him to the floor today, we are just waiting for a room to be available.
Thank you for checking in on our little guy, we appreciate all your love and support at this time. He is healing, it is just a process. HIS own process.

A little hasty...

I posted that last post hastily because the Team had just stopped by. So that goal today is to pull the Art line, IJ line, pacer wires, catheter. Leave in the 3 chest tubes, and 2 IVs. Severin's skin started to look flushed on his head and then it slowly went down his body and the stopped at armpit level, straight line across his chest. Oh then that started a ruckus, Dr. K, Attending, Fellows, Echo Tech all came in. The concern WAS (and I say was because for the past 2 hours we didn't know what was going on with his head) because there may be a clot or a problem with his conduit.  Everything looked good from a heart point. Medicine is the process of elimination. The new hope is his red and sometimes purple face is just his pressures balancing out, or his slightly elevated hematocrit. We can hold him now so we are getting lots of snuggles in.

Post op Day #1

Severin had a pretty good night. At one point he was on all fours- which really freaks out the nurses. Patients in the CICU stay laying down.

He took apple juice last night and held it down.  He woke up for me and drank 8 more oz of apple juice. He looks at me and says "eyes serstie" They are decreasing his sedation today. He is not on ANY medications for his heart. This is amazing news, most kids have to be on medication to keep their heart squeezing at this point. Severin's heart is doing AWESOME! He has RED lips!

Post Fontan

 

Just resting ... holding Moms hand

Update #4 1:00

Just had a surprize visit from Dr. Kaza. He said everything was great! He gave me a piece of the Gortex conduit that is in my boy. It was an 18 mm in size, it fits on my finger, a little bit bigger than a penny

It is soft and a bit stretchy. A heart mom just came past and said she just saw him on his way to the CICU and he looks great! We can go be with him in about a half hour.

Update #3 11:55

Of course I ran to the van to get my gummy bear fix- and they called with an update! Severin is off bypass. He will be in the OR for about another hour.  This was really fast. hopefully this equals a fast recovery!

Update #2 10:45 am

He is on bypass now everything is looking great. Truely this is going a lot faster than I thought it would.  Here is a little info from Wikipedia about bypass. Cardiopulmonary bypass (CPB) is a technique that temporarily takes over the function of the heart and lungs during surgery, maintaining the circulation of blood and the oxygen content of the body. I can't wait until I can "nuggle" my boy again.

Just in case you wondered what we do....

 

Yep that is pretty much it.. In our quiet corner. Some blog followers may recognize the red purse next to me. I thought it was appropriate

Update # 1 at 8:45

First thing the Nurse said is "your boy is So adorable!" I must agree! He is sleeping comfortably. Incision is made. I can not say it enough. I love his surgeon Dr. Kaza. Not only is he brilliant in his field, he is a good soul. I know without any doubt in my mind my son is in the most capable hands right now. He loves my son as if he were his own. His kindness, and sincerity is a tangible attribute in his handshake.

loves and kisses!

 

Silly with Daddy

 

 "Nuggle" Mommy, notice he has his belly button? He is getting nervous

 

Not quite ready to go, but I would not be able to hand him over to anyone other than Dr. Pribble. He is the best and he has been with my boy from the very start.

 

Blood Pressure Pulse ox-no problem!

He weighs 26.89 pounds I'm calling it 27 that is only ONE pound off from where they wanted him to be!!!! Prayers are answered!

 

A tiny wait in the waiting room is no big deal with video games! Sev had no idea how to play. His character kept falling in the water and swimming- that was his fav. part

 

Yeah for the "hotpitpal"

Wake up time was 4 am, Severin could drink clear liquids until 4:30 so he drank apple juice. FYI they needed a urine sample for preop work, I thought it would be best to put the little "collection" bag on him while he slept...I waited until 1 AM for him to pee so I could put it in the cup and get it in the fridge. At 4 when I woke him up he finally peed! I think this kid should potty train well..ok done with the side note.

Severin woke everyone up and said good bye, even Gma, Gpa and Daisy got a "see ya later alligator"

After MUCH deliberation he decided on the Police Car. It was Transplant Thursday so we saw 2 of our transplant buddies. 

I would give him a big shove and away he would go down the hall. He says "WEEEEEE! BONK!" when he crashed into the door. Same day surgery was packed today so we hung out in the hall, no germs can find us out here!

Here we go again!

Hey lookie I did it- ok with a lot of Thoms help....

When I figure out how to get the picture off my phone and on here I will post a cute Sevie pict.
But until then.... We did all the preop stuff today. One owie for some blood, chest xray, physical, and now I am trying to catch a urine sample while he sleeps. He only cried for the owie. He got 2 stickers and a plastic snake. Which he discovered the NP is afraid of, so of course that just egged him on to tease her. "Onnie, rahwor" then he wanted to find her upstairs. I told him he could tease her tomorrow and all weekend because she would be here. He got the most devious look on his face. He seemed to be satisfied with that and I'm sure he is cooking up a plan for her.
He is the first case of the day scheduled for 7:30 am. We need to check in at 6am, less then 6 hours away from now... So hopefully by the time everyone is awake I will have already posted some cute picts of our boy! I will keep the bloggitty updated as we get updates. This surgery will be about 6 hours, the hospital is a great time vortex! Thank you for your love and prayers. They lift us up at this time.

This is a Pizza Picnic

Pizza Picnic is a weekend Family Favorite.

WINTER WONDERLAND!

This year we skipped the "jumping in the fall leaves" and went straight to "snowmen and snow angels

Oh the JOY on her face!!!

what happens when you try to run in the snow and you fall on your face and your mitten falls off??

You lay there and wait for your Mommy to come and pick you up.

after she has taken a proper photo of you

Johnathens Snowman!

yes he is eating it, shoves his face in the pile and then scoops up more!

"

And the Mommy has Strep....

I do not know what this means for next week. Severin is on an antibiotic for an "inflamed" ear, so he is protected from the strep. What about the other kids? I have no idea. I want to cry, but then I would produce too much snot and then I would choke on it and that would hurt to cough. So I put Sev down for a nap, Neleh in front of cartoons, and go back to bed...

T minus 11 days and counting.....

Do you know what today is? November 4, yep a pretty normal day. My guy and I are home from church. He had a rough night last night, I think he may have an ear infection on top of his chronic cough and snotty nose. Bunches of people are fasting for him today, so of course today is the day he gets sick. Worry doesn't seem to describe what I feel. I will talk to Cardiology tomorrow and see if this is a set back or if we can just let him process through it and go ahead with the scheduled surgery date. I just need him to be healthy, and stay that way.
A lot of sweet people ask how I am doing. I think I wear my worry on my face. This is my response: my house is very clean and organized. I have made 15 freezer meals. I cry every day- but I am able to schedule it so not to scare the children. I organized the sheds outside-I'm not sure how Thom feels about his "man shelves" being covered in flowery contact paper, and everything is neatly packaged in a plastic tub, and alphabetized. I have made to do lists, daily schedules, phone lists, menus, essential oil blends, homework schedules, crafts for Sev while in the hospital, and washed all the stuffed animals he wants to take with him. I try to control the things I can, because I am in an uncontrollable situation.
I explained to my seven year old about the Fontan procedure. He is really worried about his brother. He always wanted a brother and Sev is the bestest one around! He seemed to understand my diagrams as I described blood flow and how Sevies heart is different than ours. He even explained it to Thom later that night. Really very sweet. Yesterday we saw a Life Flight helicopter, we always say a prayer when we see one, Johnathen offered the prayer, and when he was done he said " I really hope Sev will be ok" me too buddy me too.
I refused to turn my calender over until yesterday, but I don't have to look at it, just a few more days of ignorance. Time is slow and fast simultaneously.
Severin was given a priesthood blessing tonight. He was amazingly well behaved. I hope my faith is enough, and my son will be healed.

Fasting and Prayers- an email

We are inviting all who would like to participate in a Fast this Sunday for Severin. He is scheduled for his 3rd open Heart Surgery on Nov. 15. We ask that you might say a little prayer for him on that day also. Maybe even throw one in for his Momma, Daddy,big Bro, and Sistas'. This is #3 and we knew he would have at least 3. There can be many complications from this procedure. Many kids leave the hospital doing great, and 2 weeks later when their body catches up with what has just happened, the trouble begins. Pray for his health, a speedy recovery, and minimal complications. Good vibes count too! I will keep everyone updated via the blog 4-everQuist.blogspot.com
This is Severin's journey. We will be with him every step of the way.
Thank-you for all your support. We feel it. We love you all!
Loves!
Thom and Ang.

This is Halloween,This is Halloween, Halloween, Halloween

Nacho Libre

 

Super Neleh!

Scary Skeleton

Sedated Echo Oct.16

Sorry no cute picts of  my boy. I knew we had to be there for an hour before our echo was scheduled... I did not however plan on them being an hour behind schedule. I did not bring my bag-o-wonder. I had to entertain a nearly naked diapie boy for 2 hours with what I had in my purse. He couldn't eat or drink anything so there when the majority of the entertainment. He kept saying " ona wink", he was so thirsty. I tried to wake him up and give him a bottle before he had to go NPO, but he'd rather sleep. So by the time the NP who was doing the sedation came in Sev had bows in his hair, and threw a plastic cockroach at her. He went through an entire bottle of bubbles- thanks Tiff! We love Tiff she is a CHDer herself and she works in Cardiology Clinic. I had to chase him around the clinic. The wall is painted with fishies and they had the Halloween decor up. He had to go see the "fifhs" and "bidies" and pumpkin- I really have no idea why he can say pumpkin but not fish or spiders. He was so brave for the IV. It was really hard for me. He kept saying "don't mom" and looking at me with his pleading eyes. We had the whole IV Team singing ABC's and Twinkle, twinkle little star. They were awesome! As hard as it is for me to see him go through painful things I will never leave him alone. We both cry, and hug each other tight after its all done. The echo was great. He has had some decreased function in his left ventricle since his Glen. But it is not worse, and his Glen has great flow. So we are good for the 15th. He MUST stay healthy. He already has a cough and runny nose that will hopefully clear up over the next month.
Afterwards they took us up to recovery in same day surgery. We had kids all around us who had had different surgeries. After about a 1/2 hour of me holding Sev, and drinking a "flushie" and "brite", he perked right up. He wanted me to push him for a ride in his bed again. His nurse told him he could have a wagon ride when it was time to go home. Then it was "wagon, Sev, ride, now" with his finger pointing at anyone who would listen. He discovered the TV remote. He found his way to a football game. He shouted" go, football,go!" and "run, football guys, go!"I guess he is a fan? Sometimes he would say "mom" over and over and over just to hear me say "yes" or " what", I was standing right by him. Then he saw a nurse giving her patient some apple juice in a sippy cup. Oh you bet next time his Mary came by he let her know he wanted "juice, sippy, now". He wanted to know everyone's name, and when we left he said bye to everyone by name. He is a charmer, and everyone who meets him loves him.
Since being home his sats have been in the toilet. His lungs are clear. But I had him on 1.5 liters of O2 last night to keep him in the 70s. I'm going to call Cardiology about that one.

Upcoming Cardiology Appointments

I almost forgot to post.... We have dates!!!
October 16 is the sedated Echo- this will be at PCMC, hopefully I can talk them into lettting him do an oral sedation and he won't even get an IV poke! If not it is just IV sedation, so no intubation, no leaving Mom and Dad
Surgery Date is November 15 with pre op labs the day before. This is the 3rd Open Heart Surgery that we knew he would need. After this he may need a pacemaker when he is a teenager, or a transplant. Thom asked me how I felt about this date... nothing really... I've asked all the questions I know of. The worry is always there but the alternative to surgery is death and that is exactly what I have been trying to prevent. I never thought Heart Surgery would be so casual to me. The past 2 1/2 years have taught me so much about life, myself, my family, my husband, and our purpose. Severin's heart is telling us it is ready for the next step, and we are on this journey with him, so away we go.

MMHS Homecoming Sept 22, 2012

Happy Birthday cupcakes!

Morgan and Kyle

Morgan's 18th Birthday!!

small travel size toiletries

earrings that match her dress for the dance

firstaid kit and lip gloss

And a lovely luggage set

all in support of Thoms "get the crap out" plan

Seriously we couldn't ask for a better Daughter/ now Adult. She has mailed in her voter registration info so she can vote in the upcoming election. She has her Senior year of classes scheduled out. ACT in October, college applications in by December. Wow she really is growing up!