Update and Pictures

So Greyson has been at 100% since the heart cath to close his fenestration.  I made the mistake of telling him that it is okay for him to get winded and that he will recover now that his heart is fixed.  He now goes like crazy!  A month or so ago he was playing and breathing heavy.  I rubbed his head only to feel sweat!!!!  SWEAT!!!!  He has never played so hard he started sweating!  I literally cried!  The fact that he had that much energy to play that hard had me all teared up! 

 

We got a boat this summer and have done some tubing and fishing.  Greyson and Addison both are loving going tubing and are both super great at fishing.  We went camping for an entire week the beginning of October and had a blast.  It was so relaxing.  Addison learned to get the hooks out, put a hot dog on them and hand them to daddy.  She is quite the little fisher woman!

 

We went to the Mizzou homecoming parade again this year.  The kids thought it was great that they could slap hands with all the sorority and fraternity people as they walked by.  

 

Greyson got his post Fontan gift.  Yes he got a dirt bike!  He is SOOOOO happy.  He loves it and tells me all the time how he is faster than Villipoto!   He is excited to go to Supercross this year and meet Villipoto.  We are interested to see if he will actually talk to him or not.  He will either tell him how he is so much faster than Villipoto and could beat him in a race or just not talk at all.  Who knows?!

 

Of course he was Captain America for Halloween.  He was so excited and even got a Thor costume for Christmas.  So now he runs around the house yelling "HAMMER!"  It is really funny.

 

He has been doing lots of riding during October and November.  We have had some warm days and he doesn't hesitate to get out on his bike.

 

Addison and Greyson got a new baby niece and they are totally in LOVE.  She is adorable and they really love holding her...but we are all in agreement that we do not need any more babies.  We like being able to play with Rylie and then give her back when we are done lol. 

 

 

 

Greyson also got a puppy last August.  He decided to name him Charley...I do not know why I really thought he would name his puppy Bolt after his HUGE love for the bolt movie (remember we watched it nonstop during post Fontan recovery).  So we now have Charley Marley...and yes he lives up to the Marley part of his name! but Greyson loves him and he puts up with a lot from Greyson.

 

The kids were super excited to put up the Christmas tree and pose for some pictures underneath it.  Christmas was a blast for them.  We didn't go to all out but they always get enough stuff from grandparents that we don't feel the need to get too much.  They are pretty good at being excited about just a few things.  They did get scooters to ride when we go camping.  Judging from us and Grandma T and Papa Gary I think we will be camping a lot this summer.  I don't think the kids will complain to much about that.

 

We had a check up with Dr. Rahimi the week before Christmas.  Greyson is so big!  Dr. Rahimi asked if he could listen to his heart and Greyson just pulled his shirt right up.  It was too cute I had to snap a picture.  After I took it I realized that I have no pictures of Greyson and Dr. Rahimi.  He gets all of the credit after all.  If you ask Greyson who fixed his heart it is always Dr. Rahimi.  He says "I think Dr. Fiore fixed my heart, but he didn't" LOL.  When we went up to have his last heart cath Greyson asked for Beth (his girlfriend) first thing.  When Dr. Rahimi heard he was asking for Beth and not his doctor he came in and called him out on it.  Greyson is always very excited to see Dr. Rahimi and that makes for some very easy appointments.  I am so glad my little boy has handled this all so well.

 

This weekend we went to a benefit for another local family who has a daughter who is at Cardinal Glennon right now at the beginning of their heart journey.  Please keep Baby Harper and her family in your prayers.  

Post cath...ready to go!

Got our echo and xray done. Waiting for dr J to look at them and then were headed home!  Greyson is doing awesome this morning. He wasn't really happy to have his IV taken out or the huge bandage on his groin but he didn't do too awful.
He also stole my yogurt this morning but I'll take it. He has been eating like crazy! 

Reunited and it feels so goos

Got to see our little man. He was just laying in his recovery bed calm as could be. Getting ready to move to the floor soon. I'm both sad and happy at how he has handled things. This morning it made me sad that he was so upset after he took the versed and so upset when we had to part. He has been such a big boy after the procedure which is not normal for him. The last few times I've come back to a crying for me and not happy at all. This was very different. 
Look at those numbers!!!!  He's never seen sats that high in his life!  Look out everyone. Crazy greysons comin through.

Cath update #2

They did find a small collateral that they were able to coil off.  They checked a plug in his fenestration and were able to close that as well.  With the temporary plug in he was at 97% which as per the norm is about 10 percentages higher than when we got here.  I am sure we will have one crazy little man tomorrow.  I guess we will see if the world is ready for 100% Greyson!  We should be able to go back and see him soon.  Just waiting for the call.  They have to put pressure on there for 20 minutes to start the healing of his groin.  I will update again later on.

Cath update #1 - 1 pm

Just got an update from Beth.  Greyson's crying was short lived and he is now under and Dr. J is in on both sides of his groin.  They are getting ready to start taking pictures and checking pressures.  They will close any collaterals that might have popped up and the ultimate goal is to close the fenestration.  I should hear another update in an hour.

Cath day

Greyson is now nearly 7 months  post fontan. He has been getting winded more than after the Fontan and his color is somewhat blue. His sats are running in the mid 80's. Yesterday we walked up a flight of stairs to my moms office and he was breathing pretty heavily when we got up there.
So we are headed up to stl to have a cath done and either close the fenestration they left open during his last surgery or he had some small collaterals before surgery that were just too small to coil and they may have grown and need attention now. Either way we are hoping to get the issue handled today.
The small issue we have is a little runny nose and some coughing. Hopefully they will still do it. I spoke with beth and she said if its not green (infection) then he should be fine.  Of course there is still the chance he might be sent home. Fingers crossed we get to stay and get this taken care of.  Ill keep updating throughout the day.

The good the bad and the AWESOME last 4 months!

So we are now 4 month's post fontan!  Just checked and I have not updated since we left the hospital!   Wow what a slacker.  Lots of things have happened since then. 

 

A few weeks after we came home we went fishing!  Greyson really wanted to go fishing I guess winter was too long for him.  He has been doing quite a bit of fishing these days.

 

He got his first pet.  Now I know most kids get a dog or a cat but around here we get cool pets.  Yes each kid got their own fainting goat.  Greyson's baby is Rowdy and Addison's is Gauge.  They bottle fed them for months and now they are like little puppies.  And yes they have fainted!

 

He took swimming lessons.  He liked the water but I think he has done better since we stopped lessons.  We even found out how small this world is when one of the little girls in his class is friends with a heart friend from Carolina!  

 

We have taken trips to the park.  We NEVER did this before because surgery since his oxygen levels were so low he didn't have the stamina to actually play on the playground.  Yes Addison probably suffered life long trauma from not going to the park any earlier but it just wasn't fair to Greyson.

 

We would alternate between the park and the spray park but when the kid saw the beach right next to the spray park we were done with the park or spray park.  Who wants to play in clean spraying water when you can get in a lake?  Apparently my kids do not share my distrust of water I cannot see the bottom of.  Don't get me wrong I get in the lakes but I am not near as comfortable with the unknown.  

 

He got buried in the sand!  With his new found energy post fontan he does not lay still very long.  He wanted to lay in the sand and be buried but he sure did not have time to stay long before he was on to the next thing.  

 



 

The bad!  He had 2 bloody noses within a few weeks of each other.  I was worried at first but then we figured it was just due to his new found energy.  When they say "he is all boy" I did not realize all boy meant crazy all the time!  Addison was so calm and thought things through.  Greyson goes into everything head first sometimes getting hurt and other times shaking it off.  You can tell from this bloody nose he had not been crying.  From the look on his face I would guess sissy is the one crying in this encounter. LOL.

 

 

We took a trip to the zoo.  Greyson liked the hippo's and was making fishy faces at the fish swimming around with them.  I am surprised he didn't ask for his pole HA!  Him and sissy posed for pictures.  We went into the butterfly house.  I am not sure why we have not been in there before.  The kids loved looking at the bugs (securely in their cages of course) and then Greyson was having a blast chasing the butterflies around.  *No butterflies were harmed in the making of this fun!*  

 

One of the things Nate remembers from being a kid was their family camping trips in the summer.  Many of his best memories happened on camping trips.  It was definitely something we wanted to share with our kids and lets face it we can take lots of vacations and not spend a lot of money.  One of the kids favorite things to do when we go camping is to feed the fish at the marina.  Granted it would probably be cheaper for us to buy a bag of fish food and take our own they would probably frown upon that.  So we spend multiple quarters a weekend feeding the carp that hang out at the docks.

 We got lots of new toys to take camping and a bubble gun was obviously a great time.  Lots of relaxing time spent around the camp fire. 

 

Greyson is willing to take any chance to go out on the boat even if it is in the middle of nap time.  That usually means he will pass out on a boat ride.  Sometimes he sleeps for a good while as we troll around and crappie fish...other times it is a short 5 min nap across the lake to another fishing spot. 

 

On of his BIG complaints on our first camping trip was that EVERY kid has a bike.  We took Addison's bike and Greyson's electric jeep however the jeep was not cool enough for Greyson.  He got very upset when everyone was riding their bikes and he did not have one.  Now mind you no regular bike would would work for our future motocross star.  He had to have the Yamaha dirt bike bicycle.  Was that at any of the stores near us on camping?  Absolutely not!  We had to drive clear across town to get the bike when we got back.  He is one SUPER happy little dude!  He actually rides pretty good for not having it for very long.

 



 

Finally around the beginning of July we convinced daddy to put our pool up!  I do not know what took him so long clearly these littles were super excited to get in.  Oh yeah that water is fresh out of the hose freezing.  Both of them were happy to get in there and play in the freezing water.  Post fontan Awesomeness...Greyson's lips did not immediately turn purple.  In fact, I kept waiting to see shivering purpleness and he just kept going.  It brought tears to my eyes.  

 

We also went bowling this summer.  A first for both Addison and Greyson.  They really enjoyed it even if it did take 2 hours for the ball to get down there.  Their excitement while waiting for the ball to hit a few pens was very contagious.  We did get them a ramp thing to roll their ball down and they ended up getting a lot more pens.

 

 We went camping, again ;), a few weeks ago.  He doesn't even need a push to get his bike going.  He is quite the problem solver.  He also enjoyed playing beanbag toss with daddy!  We now had to make our own bean bag boards complete with their own beanbags in a material they each picked out.  Guess what Greyon picked.  Yup Motorcycles.  Addison, being the princess she is got pick with silver tiaras on it.  

 

Our county fair was this past week.  We weren't going to go but there was a motorcycle race and daddy and Greyson wanted to go.  What daddy didn't factor in was that we would have to walk past all the rides on our way to the motorcycle race.  Did the kids want to ride? OF COURSE!  So the next day we went back and let the kids ride the rides.  We were a little upset considering there were only about 5 rides they could ride.  The kids didn't seem to mind and got their money's worth on those few rides.  Greyson was instantly drawn to the motorcycles...do you see a theme here?  The boy loves motorcycles.  His cardiologist is going to love the first time he shows him a trophy or video of his riding.  

 

On our latest camping trip we got a little rain.  Daddy and GJ were out in the boat on the water when this little drencher came in.  They said it was like a wall of rain you could see it coming at you.  Greyson was having fun playing in the sprinkle of rain but when this drenching rain came in do you think he headed inside? Heavens no!  He was out in the rain getting soaked!  He played in the rain for a good 20 minutes, which is about all it lasted, and then we got nice dry clothes on and had dinner by the fire and s'mores.  Greyson thinks the best part of smores is the chocolate.  Is this a huge waste?  Yup but I don't care. 

 

I know I was very stressed before Greyson's surgery and at times I think I may have let that stress out on my kids.  Other parents say at times we all do but I don't want to do that anymore.  Don't get me wrong I am not abusive to my kids or anything but I do get a little short with them and forget that they don't see the world the same as me.  I am working on seeing things from their point of view and learning the world around us.  I am working on staying calm and not hurrying everywhere.  Someone on facebook shared a post on a mom who hurried her kids everywhere.  She wanted to be places at a certain time and she was a stop and smell the roses kind of child and I have one of those for sure.  Greyson would rather stop and check things out and gawk...sometimes at everything... than get where we are going.  I work very hard to not spaz out about things like catching a cold playing in the rain and let him have fun playing in the rain.  Did it mean more work for me undressing and redressing him in warm dry clothes?  Absolutely but he had a great time and I felt like a much better mom and much less stressed by letting him do what he wanted when it didn't hurt anyone or anything.  I will be striving to do more of this and I think we will all be happier even if it takes us 3 times as long to get things done. ;)

 

I would say I will try to post more often but lets face it summer is busy for us and we are camping like crazy so I can't make any more promises. 

 

Also please keep Derrick in your thoughts as he gets ready for his Fontan.  Lets hope he has as quick of a recovery as our little superhero did.  Yes Greyson says his scar is where they put his superhero heart in!  He is one tough little guy!

 

We gone!

Greyson had a chest x-ray this morning which looked good. We saw all of his doctors and they all agreed he is ready to go home!  He is going home on his regular aspirin, lasix which he will be on for about a month or less. He will also be on enalopril for life.

I can't believe it has only been 7 days and we are going home. Little man is a rockstar!  He's my hero. He is so tough. Just a week ago today Dr Fiore had his hands inside Greysons chest and today we are driving home.

We go back in a week for a check up with his surgeon and then in a month for a cardiology check up. Eventually he will likely have to have a cath (within a year) to close his fenestration but for now we are done!  We will always have to see cardiology but 3 years ago when all of this started this was the surgery we had to get through. From here on out it is mainly just regular appointments and possibly minimally invasive procedures. I am so glad to be going home so we can just recover and catch up on some sleep.

Ill keep updating the blog as we do appointments and heal. Hopefully from the computer and not my phone.  I know these updates have been full of typos but my phone was all I was able to get to.

Day 6 post op

Greyson had an excellent day yesterday. They had been weaning his oxygen ovet night but he had been sleeping and it came out of his nose so he wasn't on much and it wasn't going directly into his nose. So there wasn't much point in it.

I had to take Addison down to her urology appointment at 10:15. Her reflux is healing enough that she no longer has to take medicine which is good considering she hasn't had it all week. With everything going on it had been forgotten but turned out to be a good thing. She also should not have to have the painful VCUG test any more!  Excellent news.

When we got back from her appointment cardiology was headed into greysons room. They decided he could come off the oxygen and the NG and central lines could be removed. Yeah!  We took the central line out and of course the tape was the worst part. He was such a good boy and just laid there asking for mommy. He was so happy to have that NG and oxygen out next. He has done fine without it.

The plan is to go home tomorrow. And we are all ready for that.

Big news revealed...post op day 5.

So this afternoon they took Greysons drain tubes out!!!  Dr Fiore told us before the surgery that EVERY kid drains for 7 days. So at 4 days we were surprised by how little he was draining.
We, including Greyson, are so happy to have those out. It was a big event and extremely painful for him but only took about 15 mintues.  He ate a strawberry shake milk (aka milkshake) with sprinkles and almost a whole bag of goldfish crackers. He even sat up in bed and played for a while.  Later he wanted to walk around so we got dressed and stood up but walking wasn't quite on the table yet. We couldn't find a wagon to ride in and by the time our nurse (who he renamed Frank, yes she was a female) got back with it he was done. We were going to have his xray done but they weren't ready for him so we headed back to the room.  We got all settled and about 10 minutes later she came in and said xray was ready now.
Greyson was pretty lively today. He was trying to roll onto his stomach to get up but his chest muscles hurt too much right now. He's still learning that he needs help with that.

He thought he was pretty funny farting in his diaper today. By 4 days since a poop his farts were pretty nasty smelling, not that they arent usually. Apparently we all needed to share in his gas because he had grandma, sissy, and daddy come over so he could fan the top of his diaper open at them.  Gross kid. Day 4 of no poop is all we went. He woke up with nasty pants and should be feeling better now abominally. 

Our goal this afternoon was to get him taking his meds by mouth so that the NG tube could be removed. We are weaning the oxygen tonight and should be off it by morning. Hopefully those can both come off tomorrow along with his central line in his groin. He should be only.monitors by tomorrow evening as long as he keeps taking meds orally. I did tell him he would have to stay if he didn't take his meds and that I wasn't staying in the hospital. He decided he wanted to go home with us. I know kind of mean but hey it gets the job done and we arent taking an NG tube home with us.

Please forgive my posts. I haven't had a lot of time to get them done and im doing them on my damn phone that doesn't know what autocorrect is.

Post op day 4. We move to the floor!

Greyson is full of it this afternoon. He was grumpy this morning for a little bit but has now decided to be a little goof. Im glad he is being so fun and silly today.

We are headed to the floor in a few hours!!!  It will be nice to step down a bit. We will be in the room we will be in before we go home.

He has his artery line out and his hand IV came out today so they didn't replace it.  His central line in his groin will come out tomorrow likely.  His chest tube drainage is the thing that decides when we leave. Dr Fiore says every kid drains for a week and his tubes would be in at least 7 days. This morning he is talking about taking them out tomorrow...at 5 days.  They should be out by 6 days for sure. He will feel much more comfortable when he has those 3 tubes out. Its likely we will be here a day after the tubes come out. Once he gets to the floor and gets to moving around more his drainage could pick up.

Hopefully we dont have a night tonight like we did last night. I need my sleep and I'd appreciate him sleeping for a while too. Hopefully he's in a good mood tomorrow morning and stays that way all day. At least he should feel better after the tubes come out. We also have to convince him to take his meds by mouth so the NG tube can come out.

The first picture is while we were changing his dressing.  Thats what it looks like underneath. The other 2 are of him playing with lightening and mater that came in his easter basket from the hospital. I cannot say enough great things about cardinal glennons facility, doctors, and  nurses. I'll update again later.