Thursday, October 24, 2013

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! 

Wednesday, October 23, 2013

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.

Monday, July 29, 2013

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 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!


Wednesday, April 3, 2013

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.

Monday, April 1, 2013

Big news 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.

Sunday, March 31, 2013

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 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.

Post op day 3 evening

Today has been a roller coaster as far as how Greyson has been feeling. He woke up in such a great mood and made daddies day with a phone call. Then he made me a liar when everyone came to see him and he just laid there grumpy like before. He did tell GJ "bye" and "I love you too".  Not sure how he picks who he's going to talk to. Sissy LOVED coming back and seeing brother today and I think he liked seeing her, even if he was a tad grouchy. Then he zonked out and I finally got up for my first potry break, at 1:30 pm. I was able to get some Arby's, even if I did almost fall asleep in the line.  I got a nice warm shower and he got a nice long nap.

When I got back and he woke up his nurse took his arterial line out of his groin. Now we are down to NG tube, oxygen, central line in his groin,  IV in his hand and foot. He is off the sedative making him sleepy but still gets oxycodone and tylenol.

He started eating today. Nothing like at home but he ate a popscile and some fruit loops. Hopefully tomorrow its even more.

He did finally poop some, and in his diaper luckily, so hopefully thats just a start. I think it made his tummy feel better. He hates having his diaper changed and I'm sure its not the most comfortable. 

His drainage tubes are putting out a lot less so we should not have an issue making it to the floor tomorrow.  He needs to be down to 30 every 8 hours and he had 40 in 4 hours. Dr Fiore says everyone drains for a week so he is doing exceptionally well with that. It could get heavier the more he moves around but so far he's doing very well.

He has been joking around and saying some funny stuff today with intermittent grouchiness and napping.  This evening he even said some funny movie lines tonight and said be wants daddy to come back. He's alright with waiting until morning though.  He is definitely getting back to my little man. I think tomorrow is going to be even better.

His sister went back home for Easter. I loved seeing pictures of her dying eggs tonight. And she got to take Elle with her so I'm sure both girls are loving that.  We will have an Easter here with both of them monday.

I think we are on the down hill slope of this journey. Well he wants me to rest my hand on his chest. It started when he was coughing and now he just likes it. So we are going to try and get some sleep. Ill update after rounds tomorrow.

Saturday, March 30, 2013

Post op day 3 morning

I got woke up about 6:45 by greyson saying "I can't"  he wanted to roll over and needed help but he did most of the rolling himself. Then he wanted his drink. He has been holding onto his ice water like it wasn't coming back but wasn't drinking it.  After he rolled over he wanted his drink back. He has been drinking it regularly this morning. He told me last night he was hungry but hasn't eaten anything. He can have a really low fat diet today. Something about the risk of fat coming out in his tubes and plugging them up. At least he can have some food.

He's been peeing a lot due to his lasix. Most times peeing out of a diaper. That was every 6 hours and he was needing a full bed change. Now its every 8 hours so he won't have to have a full bed change as often.

They are turning down the 1 drug he is still on that he can't go to the floor on and he should be off of that tomorrow morning. The plan is to move to the floor tomorrow!

Now for the really REALLY big news. Addison gets to come back and see him!  When I told Dr Fiore about how badly she wanted to see him he said she could come back.  I got to skype her this morning and tell her and she was SO excited. I can't wait for them to see each other again.

He called daddy this morning and asked him to bring more movies. HALLELUJAH!!!  Bolt has been on nonstop for 2 days and I am ready to watch somerhing else. Hopefully I'll be able to head to the hotel for a shower this afternoon and maybe a few hours of sleep. Ive been getting more here with him but im still exhausted. I get some good sleep when I know someone else is taking care if my babies.

Ill update again later after he sees his sister. I'll be getting pictures of that.

Friday, March 29, 2013

Post op day 2: evening.

Greyson did great getting his wires removed. They gave him some good drugs. He was pretty loopy. He got the RA and 2 pacer wires out and also had his NG tube replaced with a much smaller one. He did not like having the tube taken out but really hated having the new one put in.

Bowels are still an issue for him. He took miralax this morning and had the supository. He has passed gas but this afternoon we were certain he had blown up a diaper. He let out what sounded like 2 liquid blow outs. He didn't want us to change his diaper which made no sense considering how nasty it sounded.  When we went to change his diaper all we found was a little skid mark and a lot of pee. No poops but that amount of gas lets us know things are moving along.  As for urine output he has a lot. Since he is on lasix and they increased this to help with his coughing he is expected to pee a lot.

He did get 2 bites of a popscile today and asked for some of daddies soda. He got a little sip and hasn't been too interestes in anything since.

For right now the big goals are to get him to eat and drink some and get a poop out of him. He is feeling better and I have seen a few smiles today. He still feels awful and is far from himself but he's getting there. I can hold out hope that this will be like his second cath and he will wake up 1 morning feeling considerably better.  He is getting better each day and he will get there. Until then I guess we move at his pace. And his pace is good enough for everyone.

Fontan post op day 2: morning

Greyson has been in some slight pain. He woke up about 11 last night and said he had to poop. He again wanted to get on the potty so he sat up there but didnt do anything. He has been passing gas though. He had ice on his head last night for the headaches and just wanted to be cuddled (my arm bwhind his head).  He haant been complaining of headaches lately though.

He will not let me out of bed. I had to run to take a potty break late last night. He says he doesn't want daddy to lay with him but I'll bet that changes once daddy gets here.

His main issue thus morning has been coughing. Since he has new circulation his lungs are adjusting and he has some congestion because of it. They are going to up his diuretics to help with this.  He coughs but doesn't want to hold his bear or my pillow anymore. Its his main stresser right now.

After rounds this morning they stopped his heparin. Dr. Fiore is going to remove his RA going into the right atrium, his pacer wires since we have not used them since just after surgery, and his nurse will remove his catheter which should make him feel much better as well. After this we will be 5 tubes/wires down and 9 to go. He still has NG tube (and he doesn't want to eat or drink anymore), oxygen, 3 chest tubes, 2 groin IVs, an IV in his left arm, and an IV in his right foot.  Were getting there and he is getting better everyday. He's a tough little guy.

Thursday, March 28, 2013

Post op day 1 afternoon

So as much as it killed me I went back to the hotel and got some rest and a shower.  My plan was to wake up at 3 but apparently I shut the alarm off because I woke up at 4:17.

While I was gone greyson did really good. They got him to the floor and are ralking discharge in the next day or so....NOT!

Sorry that must have been my (or Greyson' s) brains wishes lol.

He is in some pain. While I was gone he started complaining that his head hurt and with some rubbing he will calm back down. He doesn't tell us what hurts until he is in really bad pain and his head hurts when uis BP gets higher so of course when he gets upset it makes it bad. He is off the fentanyl and on oxycodone. He may have to have a little fentanyl later for his pain. He is resting now. Today and tomorrow are likely to be pretty rough, which we were expecting.

He still says he has to poop. While I was gone they put him on the bedpan and he sat there about 10 minutes but still no poop. They layed the bed back and hopefully that will help relieve some pressure from his stomach.

Post op day 1

Greyson is thrilled to be extubated!  His throat hurt last night and he wanted a drink but could not have one.  It made for a long night of very little sleep for any of us.

This morning Dr Fiore came by and said he can have something to drink. He was really happy to have a drink and some ice chips.  He will move to food eventually but his throat is still pretty sore.
Right now he is cuddling with daddy in his bed...which is super comfortable let me tell ya lol.

He is getting ready to get the line in his neck out which may make him more comfortable.  He is doing really well. Ill update again later.

Finally extubated at 2:30 am

Greyson was waking up with a clear look of terror on his face...not pain...terror.  this started about every 45 minutes then went to 30 min apart down to 5 or 10 min between. Our nurse had the resident come in who decided to tell me that to extubate, the drugs have to be reduced and that he will be in pain if they do that. She was very rude and I was not happy with her. Finally the evening dr came in and watched him a while.  She said he will be agitated after the tubes out but that was the best option right now.  He is finally tube free.

Wednesday, March 27, 2013

Fontant day 0 update

Greyson is still intubated, however, he woke up and saw us some. It was very difficult as he freaked out. Full on straight legs, arched back, eyes widr open freaked out. He is restrained but he was very scared, which made it hard on us, and was fighting the tube down his throat. Our nurse called the person in charge of his extubation but they still want to hold off a bit.  He seems back to relaxed and sleeping for now. I think one of the hardest parts of his first heart cath and his surgery has been watching him before he gets extubated. He is really trying hard to breath around the machine but I think thats difficult.

Update to my update:
We will be watching our son be uncomfortable and dight the tube all night. Although his surgeon wanted him extubated tonight the damn attending tonighy doesn't want to extubate him. Which means I'll be up every 15 minutes or so comforting my baby as he tries to cry bc there is a huge tube down his throat. Yeah im a pissed momma right now.  I won't watch this long before I'll be talking to that attending. Our nurse is on our side and will talk for us if he keeps acting upset. If he would actually stay calm and sleep tonight I would be fine with it but if he keeps this up, the way he has in the past, I don't think he deserves to suffer. I guess we will see where he is in the am. Clearly I'll be awake with him all night. Daddy can't decide if he should stay here or go back to the hotel.

Fontan update 4 pm

Greyson is done. We talked to Dr Fiore. Everything went great. He said we are looking at 5-7 days in the PICU. Hopefully him and sissy can deal being apart that long. We should be able to see him soon. I can't wait to see my boy!


Dr. Rahimi came out and said that Greyson did great.  He did the echo and said that everything looks great.  His heart was in normal rhythm but then it needed paced so at this time they have him on an external pacemaker.  Dr.Rahimi said that he will likely go back into regular rhythm and then end up having the pacer wires pulled.  They still have to close him up and get him situated in the PICU before we can see him so it will likely be another hour or two.  I can't wait to see my baby boy.  Now we are on to recovery...which is the biggest part that scared us. 

He said that his saturations were 100%!!!!  Greyson has never been 100% so I am thrilled.  Will post pictures once we see him.