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.

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.

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.

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.

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.

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!

SURGERY IS DONE!!!!

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.

Update 1:30

Greyson is on bypass and they have started the surgery. He is doing great.   I can't believe it has been 4 1/2 hours.  It sure doesn't feel like it has been that long. 

This is a link to the procedure that he is having done today.  He does not have the same defect but the basic is that he is having the tube inserted from the inferior vena cava (IVC) to the pulmonary artery (PA). 

Fontan Update 12:30

Barb just told me that they have made the incision and are almost on by pass but not quiet.  He is doing great. 

Fontan update 11:30

Greyson is out and has all of his IVs in. We saw Barb for the first time in quiet a while.  He is doing great and we will have another update in about an hour.

Surgery has begun...

They gave greyson his versed and Beth came and took him back to surgery. There were many tears shed by mommy and daddy but greyson was just happy to go with Beth. He will do excellent today. Ill update as soon as we get an update.

Pre surgery meeting

We saw Dr Fiore this morning. Greyson has perfect numbers for the surgery tomorrow.

One of the major concerns we had was that they didn't have to stop his heart in the first surgery and they would this time.  Dr Fiore said they will not be stopping his heart tomorrow, but they did the first time. I was fairly relieved to know they weren't stopping it again.  He also said fatality rate and complications are less than 1%, which was also a reliefe.

We are getting ready to be discharged. IV is out and we will be back at 6 in the morning.

Cath night

I finally got back to see Greyson about 4. He was still asleep but they were not stimulating him to wake up at all, which made me happy considering he was so upset last time.  He started wanting mommy and the nurse was going to give him some morphine. Rather than give him drugs when he wasn't in pain I opted to hold him in the wheelchair so we could just head to the floor.  Once we got to the floor we played a little game of flip flop mom and dad. Hopefully he will let mommy sleep with him tonight. We will see. Wednesday and after surgery is going to be rough on all of us.

Cath update 2:30

Greyson is done. They didn't get the one by the plug as it was too small. He did great. Dr J should be out to talk to us soon and then they will come get me as soon as he gets to recovery.

Cath update 1:30

They are coiling off some collaterals on the atrial side now. They still have the one by the plug that needs to be done. They did lab work this morning and we are a go for surgery wednesday. Greyson is doing great so far.

Heres a pic of him earlier before he went back. 

Cath update 12:30

They have gone in through Greyson's left neck and right groin. There is a small vessel growing to the PA. It comes off right next to where they put the plug in. They have to take a lot of pictures and readings since this will be in preperation for his surgery. They are going to start on arteries and will update us in about an hour.

Thanks for checking in on our little man.

Cath day

Today is greysons heart cath. When we sent him off a few hours ago I was more hoping it was for surgery.  Call me crazy but its getting harder.  Im ready to be done with all of this.

Greyson was a little mess this morning, as usual. We gave him the versed although I think he would have gone with Beth without it.  She called at 11:30 and said he gave her a hug and smelled his gas and went right ro sleep. They put his IV in the left so he can have access to his fingers after. Should have another update about 12:30.

Thanks for thinking of our little man today. 

Surgery Date

I spoke with Beth today.  She said there is no chance that he will have surgery the day after his cath but that she had talked to the nurse and they can do it on Wednesday if we wanted.  Both me and Nate agree that Wednesday was great.  We want to get it over with and move on with our lives...not that I won't worry all the time anyway.  I am relieved to have a surgery date but it is still nerve wracking.

The plan is that we will go up on Monday morning for the heart cath.  Greyson will have to stay the night, Beth said she thought he had some other collateral's back in August that will need to be coiled this time.  Nate and Addison are going to stay in the hotel Monday night and then we will be released Tuesday and we will all 4 stay in the hotel.  We are planning on having a pool party with pizza Tuesday night and playing all he wants.  Wednesday morning we will head to the hospital for surgery.  I am hopeful he will be out of the PICU sometime Saturday so that we can all spend Easter together.  It is going to be hard on Addison and Greyson to be apart.  They spend all of their time together and she can't go in the PICU.  We will be using skype so that they can see each other. 

This is going to be tough on all of us but we will get through it and be home with an even crazier kid in no time. 

Water and Warm Weather

The kids have been hounding me to go swimming for a while.  We have a really nice zero entry indoor pool play thing that they could go to but it is at the ARC which is a place where lots of kids go.  Since Greyson is on lock down until after surgery we couldn't go there.  My cousin from Indiana came in town and stayed at a hotel near us that has a pool.  She invited us to come swimming with her.  The kids LOVED it.  Couldn't wait to get into the water.  The water wasn't too cold which obviously helped Greyson.  This time swimming was very different.  Greyson's lips were purple in no time and he was breathing very heavy.  I have not seen his lips this purple in a long time.  He sure wasn't the same as last year in our pool where he would kick around and swim for a good 5-10 minutes at a time.  He didn't even make 5 minutes this time before he needed to be held and take deep breaths.  Poor guy just wanted to have fun and he couldn't even swim.  It killed him watching Addison kick around in the pool and have a good time and he just couldn't do it.  It killed me even more watching him struggle so much.  Not for long.  He will be a swimming fool this summer.

Yesterday and today have been really warm around here so we decided to head outside yesterday.  Last year Greyson was swinging in the red swing right there next to him.  This year we decided it was time for him to be a big boy and swing in the big swing like sissy.  I remember Addison learning to use the big swing and she ate dirt one time.  I was swinging him really low this time so he wouldn't fall out.  He swung for a long long time and had a blast.  He would tell me "you can't catch me" and I would run over and grab him.

 

 

 

 

After we got done swinging we got Addison's 4-wheeler out.  Greyson of course was hot on the gas, full throttle the whole time.  He will not be riding by himself anytime soon.  Addison was not interested in riding by herself last year and when we rode with her she wanted us to drive and do the gas and she just held on.  This year she chose to drive.  She was driving her 4-wheeler by herself.  I had my hands on the gas tank.  She was running in the gas and turning.  I was really proud.  She will be riding by herself in no time and racing before we know it.  Greyson says he wants a dirt bike.  He watches dirt bikes with daddy every week.  His post-surgical gift will likely be a dirt bike.  Of course we want to make sure he is starting to heal well before he gets a dirt bike, the boy is wild! 

 

Only 10 more days until heart cath.  I am trying to figure out what to pack.  I don't know if I should pack for just 1 night and come home the next day...it is likely that we will be staying the night...or if I should pack for a week at least.  I think there is a chance that he could be having his surgery the very next day but I am not sure.  Of course, if I don't pack for the long haul then we will be staying...if I do then we will be heading home.  They will be calling me Monday to go over everything so I will talk to Beth then and see what she thinks.  If she says there is no way they will do surgery the next day then we won't pack for that long. 

 

 

We are going to stay healthy and play lots and lots...inside apparently because this warm weather is apparently a teaser.  Today it is supposed to be 75 degrees...tomorrow is only a high of 46!  It doesn't look like it is going to be warming up before the heart cath either.  Guess we will make the best of it.  I will update again before the cath.  Thanks for checking in.

Sometimes you have "IT SUCKS" days!

I know I have not been updating as much as I should have.  Things have been really really crazy around here.  I finished my Medical Transcriptionist schooling and finally got a job after a lot lot lot of applying.  Then 3 months later the company shut down the MT part of their business because the hospital was not sending them as much work as they were supposed to.  So I am back to just being a stay at home mom...cause that's such an easy job in itself ;).  So since I was working on the schooling and then working ALL the time I didn't really want to get on the computer and type up an update.  I know that is no excuse to all of my friends who want an update on Greyson and our family.  So here is an update on us an the kids.


MOM AND DAD:
So I have not really been up to much.  As I said I have been working a lot and am now not working.  I can't complain though I really get to spend a lot of time focusing on the kids and I have been doing that.

Nate has been working like crazy.  With the snow that Addison wished for on her birthday it meant daddy had to work 12 hour shifts for over a week.  He was extremely tired, the kids really wanted to see him, and we 3 were going crazy being stuck here at home for all that time.  Now that is over and we are headed back to more of a normal.

 

ADDISON:

Addison turned 4!!!  Yes I said 4.  Where in the world did the last 4 years go?  She is getting closer to school than being a baby which makes me super sad.  I am terrified of her going to school.  She however is very excited about it. 

 

She has been doing gymnastics every week during the day.  She LOVES it.  Greyson doesn't do too bad sitting and watching her do her class.  She has learned a lot and is making a lot of new friends.  She wants to do dance as well.  She is signed up for a dance class through the parks and rec department.  It is only a 3 week class and she has already missed one because she was sick last week.  Tonight is her first class.  She is super excited to go and I am glad she is going to try this one out before the money is spent for her to do it for 8 months.  I am REALLY looking forward to going to 2 concerts and watching her preform though. 

 

As for her medical status she had to have her renal reflux test done again.  We decided to do it here rather than in STL because her urologist unexpectedly passed away and we were able to get in during a time that Greyson may be in the hospital so we don't have to make another trip up there.  We didn't want to have to do the test while he was hospitalized so we went ahead and did the test here.  According to the doctor who did it this time he says she is a grade 1 which is way better than the grade 2-3 that she has been before.  It may be getting better but we won't know until the STL doctors review everything and decide what they want to do.  This is both good news and bad news.  It is great that it may be getting better.  However, it is bad because if we do nothing and just keep her on the medication then she will have to have that test again.  It is extremely traumatizing on both her and us.  It is very difficult to hold a child down when someone puts a catheter in.  I had 2 catheters when I had the kids and they were VERY painful, and I had an epidural when I had mine.  I feel very bad for her and I was hoping for either no change or total correction.  I didn't exactly get my wish ;(. 

 

 

TROUBLE: GREYSON: 

So on to my dear Greyson.  Let me start off by saying he is CRAZY!  The boy goes and goes and goes...then stops for a few seconds to rest and then he is off again.  I am sure he is acts like a normal boy but he is WAY different then Addison ever was.  He barrels into things full blast with no thought of what might happen.  Addison was always very calm and would think things through before doing them...not him! 

 

Greyson has been pretty stable and not very sick this winter.  A few colds, which is way harder on a heart kid then puking sick would be.  His sats have been fairly stable unless he has been sick and then of course they have dropped quiet a bit.  The problem with a cold is that it does not make him feel sick enough to just lay around.  He is congested which drops his saturation level and then add to that the part where he doesn't want to lay still and his sats were in the 60's for over a week. 

 

He has his pre-fontan heart cath on March 25th.  In just 13 days!  I am getting pretty terrified.  I mean like I loose sleep over it and have a very hard time falling asleep.  During the day I am usually too busy to stop and think about what all is exactly going on but at night, when I lay down to go to sleep I remember all the things that are coming up and the things I want to do before then.  My mind wanders everywhere.  I would love to just shut it off but I can't.  I am usually awake 2-3 hours past when we go to bed, sometimes longer. 

 

Anyway enough of my problems back to what is going on with Greyson.  He has his pre-fontan heart cath scheduled for March 25th.  He CAN NOT get sick between now and then.  If he does the cath is off and the surgery will be later too.  He is in total lock down.  If he leaves the house it is to go to grandparents for dinner or to ride in the car while one of us goes in somewhere.  Addison is going a few places with me during this 2+ week hermit period.  She gets to go to dance class because it is in the evenings and one of us can stay home with Greyson while the other takes her to class.  I do not do well being trapped in the house ALL the time.  The darn weather hasn't been warm enough for us to go do anything outside either.

 

So in 13 days he has his heart cath.  At the heart cath he will go in and they will look and see if everything is ready for the fontan surgery and if not they will take care of anything they can then.  At his last cath he had that huge collateral vessel and we are thinking he will likely have another of those at least.  As before if they do anything in there he will have to stay over night and we are planning on that.  After his cath they will schedule his surgery.  We will know the date and all the information before we leave the hospital.  I am both excited and scared for the surgery.  I am hopeful that they will do his surgery on or before April 8th.  Call me crazy but it just occurred to me last night that Greyson was 4.5 months and 1 day when he had his Glenn surgery via emergency situation.  He will be 2.5 years and 1 day on April 8th.  Yes this date has me a little crazy.  He does not like to do anything medical on a plan.  He made them do the cath this summer since he was not supposed to have to have one until right before his surgery.  Apparently the boy doesn't like schedules.  Or maybe he just got my impatience.  Either way its on his time frame ;) 

 

I am packing stuff for us for a week in the hospital when we go up for the heart cath.  If it stays in the suit case a week or so then great but it would not surprise me if he ends up having surgery the same week as his heart cath.  I don't want to get up there and not be prepared. 

 

I think it is obvious how much this is weighing on me here lately.  This surgery is bitter sweet.  I want it done so we can move on past all of this and have a semi-normal life but I am not so naive to forget the fact that there are kids who don't make it through this surgery.  Regardless he will be in a lot of pain and that is one of the hardest parts of being a parent whether your child has a major illness or not.  To your children you are the protector, the one who is supposed to be able to keep them safe, to kiss a boo boo and make the pain go away.  I don't have enough kisses for this one.  I have to take him in there and hand him over to a situation that could take his life and will most definitely put him in a great amount of pain.  Watching your child in that amount of pain and knowing there is not a darn thing you can do about it is like being stabbed over and over again...it hurts! I am ready for all of this to be done.  And I know it will be soon but for now it SUCKS!

So some times I have days where "it just sucks" to have a son that has to go through all of this....Today is one of those days and I don't think they are going away very soon.

I will try to update more often.  I am shooting for weekly but obviously I will update after the cath.  I guess if I am not posting its a good sign that (1) there is nothing going on medically and (2) we are having way too much fun to sit around and type on the computer. 

Benefit, Magic House, and Heart Walk

So there has been talk since we found out about Greyson's heart defect about having a benefit to help pay for the expenses that come along with having a kid who apparently loves to see the doctor, lol.  We ended up having a benefit at Jake's Bar & Grill where we did a poker run, silent auction and 50/50 drawing.  We had an excellent turn out and all had a great time doing the ride.  We were so blessed and overwhelmed by how many people showed up for the benefit.  There were some great items donated.  We were floored when the 2nd place and worst hand winners of the poker run donated their money back and the winner of the 50/50 donated her money back.  The turn out for the poker run was amazing it was so neat to see so many people out riding for our son.  I was so glad we got to ride along with some friends in our first ever poker run.  Of course we didn't draw cards but it was a fun ride.  Thank you if you came out to the event, we really appreciate all that you have done.

 

Here is out little biker man.  He would have rode with daddy in a heart beat...although he might have had to fight his sister over it. ;)

 

 

The next weekend we headed to the Magic House in saint louis.  Addison, grandma, and I went there back when Greyson was a few days old and staying in the NICU.  It is a super neat place and I was so happy to be able to let Greyson experience all the amazing things they have there.  He loved playing the drums of course.

 

They have an area where you can learn about the legal and political systems.  There is a presidents desk and of course both kids had to get up there.  Greyson was apparently on an important call and his sister was bothering him for a picture, ugh!  It's tough being president at nearly 2 years old.

 

 

 

There is a bubble area, again something new from when we were there with Addison almost 2 years ago.  Daddy was able to put the kids inside a bubble, and they loved it!  They would make him bring the bubble up then they would pop it so he had to do it again.  They were having a blast until Greyson decided to rub bubble water in his eyes, lol.

 

We did play in the water area but I didn't have the camera out much.  Apparently Greyson thought it was similar to the spray park we went to this summer because he was sticking his finger in the super small fountain and spraying water all over the place.  You can't tell it in the picture but his shirt is still soaked even after daddy took it off and tried drying it with the hand dryer.

 

 

They have a little pond and fishing poles with magnets on the end that you catch little fishing lures on (without hooks of course).  Then you take your "fish" to the beginning of the creek and drop it in.  The floor has a glass covering the creek and you can watch your fish swim back to the pond.  It was one of Addison's most favorite things when we were there before and she was somewhat excited about it this time, although not as much as before.  Greyson looks excited in the picture but he didn't really care.  There were so many things for him to check out he had a hard time focusing on one thing.

 

We actually came to Saint Louis to do the 2nd annual Congenital Heart Walk.  We did the first one last year and had a great time so we were really excited to do it again this year.  It was considerably larger then it had been the year before.  Addison and Ashlyn got their faces painted which was something Addison had been looking forward to.  They were doing the Thriller dance here ;)

 

Team Greyson at the start of the walk.  I was so thankful for everyone who took time out of their busy schedules to come and spend a morning taking part in something so dear to our hearts.

 

The kids had to take a break and check out a crane in the water.  We walked all the way around Creve Coure Lake, which is nearly 4 miles I think.  Of course with 3 kid's we didn't get in any hurry to get it done.  We had a great time doing the walk and are so thankful for the people who were generous enough to donate their money for research and awareness of a cause so dear to our hearts.

 

The man of the hour even walked some, although he was still not able to walk very far without running out of energy.

 

Thanks for checking in on us.  Hopefully I can get some more blog updates in soon and try and keep it updated.  Regardless when it comes closer to surgery time and when we have surgery I will keep the blog updated through out the day. 

2012 Heart Cath

So Greyson has his heart cath on August 6th.  It was definitely not the most fun we have ever had, but not the worst time we have spent at Cardinal Glennon either.  We took Greyson up in the morning and the plan was to go home if he didn't have anything done while they were in there.

 So first thing we did was get his super cute scrubs on...I am not real sure why they even mess with these since he came out in just a diaper and let's be honest the boy usually runs around home in just a diaper. ;)

 

 

So of course we had to talk to the doctors and anesthesia about everything that was going to happen and what the plan was.  So while we waited they brought in a car for him to play with.  He was just about tired of playing in the car and running over all of us when they came in to give him the loopy meds.  He got pretty darn funny then.  He was laughing at everything and looked like he was high as a kite.  He couldn't play in the car anymore and I guess we should have put it in the hall but forgot.  He wanted to get down but clearly would have fallen if we had let him.    They took him back around 11 am happy as could be.  He was having a great time.  I told them he would definitely freak out if he woke up and we weren't there so Beth assured me she would come get me as soon as possible.

 



 While Greyson was in the heart cath we got hourly updates as to what was going on.  We decided to go get something to eat right after we sent him in, since we knew there wasn't going to be much information for us at that point.  They are really good about updating us on small things like he is out and we are getting ready to start.  We got this update while eating breakfast.  We were really hungry since we couldn't eat since Greyson couldn't eat.  I think it bothered me more then him, lol.

While they were in they found a 3.5 mm collateral vessel that had grown from his pulmonary artery down to his heart, essentially undoing a majority of what they had done in his first surgery.  They put a plug in and sealed that off.  His saturation's were up in the upper 80's after the plug was put in.  They went in through his neck to put the plug in since his anatomy is a little different then the normal heart.  They also went in through his groin so they had to hold constant pressure on his groin for 20 min after the cath came out.  While Beth was holding pressure on his groin they start reversing the anesthesia and he may begin to wake up.  He did start to wake up and Beth told them they needed to get me so he would not be extremely upset.  The boy can throw a fit, and he had to keep his leg straight for 6 hours after the cath to make sure the spot in his groin didn't come open and spray blood every where, yeah I am actually not joking that is what would have happened if it came open.  They felt the need to tell us to hold pressure on it, like we would just sit there and watch our sons blood spray the walls, lol.  Anyway, recovery decided they would just get him settled and comfortable before they brought us back.  We talked to Dr. Jardini who did the cath and he explained things to us.  Everything else looked good aside from the HUGE collateral vessel.  When they finally came and got us to go back with him he was VERY upset and thrashing around in the nurses arms when I got back there.  She handed him to me and as soon as he realized it was me he calmed down.  You can see in the picture that his face is very red, our children are both very sensitive to the tape that they use and are always red anywhere there was tape.  Our super awesome friend Lindsay told us to request paper tape from now on and hopefully it won't bother them.

 

After he was nice and comfy in my arms in the recovery area it was time to move him to his room on the floor.  Since they had to put the plug in there we had to stay overnight to make sure nothing happened.  Plus he would not be able to have his leg bent like in the carseat so going home wasn't a good idea.  We had to be a little creative in moving him to the floor since he was NOT getting in the bed so we got a wheel chair and Nate carried him in that to the floor.  It was an unconventional transfer but what about Greyson is usually done normally. ;)

 

 

We had requested a full size bed since we knew Greyson would not sleep in a baby bed by himself and we were both planning to spend the night with him so we needed the bed to be able to stay in his room.  I was pretty much stuck in bed with him all night.  He was content if we were laying with him but had no interest in laying by himself.  We think his eyes were just very irritated from the tape and he would not open them all night.  He did drink from his cup.  I had some dorito's and he could hear me eating them and wanted a chip.  He at nearly half a bag of dorito's without opening his eyes.  Then we offered him some watermelon, which is one of his favorites but he still didn't want to open his eyes.  Daddy would fork a piece of watermelon, tell him to open and he would take his bite, then tell us when he wanted another bite.  It was actually sort of funny, but we felt terrible for him that he couldn't open his eyes.  We had the lights off all evening and he did try to open them a few times, but I think it hurt his eyes and he would shut them again quickly.  

 

So before the appointment when we found out we were going to have a heart cath we had been working on potty training...and it had been going pretty well.  We decided to give up on it at least until after the cath but the morning after his cath his diaper was dry so I asked him if he wanted to go in the big potty and he said yes.  He went...and went...and went but I was pretty darn proud.  (DISCLAIMER: Don't be fooled he wants nothing to do with the big potty now.)  He was a totally different kid the morning after.  We went down and had an X-ray and got all the big stuff checked out.  Then we went back to our room to relax some while daddy got some more sleep.  

 



 

They came in and took out this IV, poor little guy.  Doesn't his hand look tiny with all of that tape and tubing on it :(

 

This is the bandage he had on his leg from the cath, the one on his neck was just a cottonball taped on.  Dr. Jardini said we could take the bandage off and Greyson wanted to do it himself.  He pulled the tape right off.

 

This is the spot where the cath went in.  They put the plug in through his neck and even that hole looked tiny.  Just a cars bandaid over it.  We got to watch the video of the cath with Dr. Jardini after Greyson was moved to the floor.  It was really neat to see everything.  They would shoot some dye through there and you could see all the anatomy of his heart.  The collateral vessel was very obvious and they showed us when they put the plug in as well.  They would put it in place then shoot dye to be sure it blocked it off.  When they had it just where they wanted it they unscrewed it and it popped off and stayed in place.  It was really neat to be able to see my kid's heart in such detail.

 

After the bandages were off Greyson and daddy decided to sit down and relax until breakfast got there.  Breakfast and our discharge papers were delivered at the same time.  So we ate breakfast and headed out.

 

Daddy wanted to stop by Cabela's on the way home.  Greyson got this cool new hat and got to check out the fish and all the neat mounts they have there.  Then we headed home to see sissy.  See his wrist band in the picture.  Mommy, Daddy, and Greyson all got one and we had this thing we would do the whole time we were there where one of us would say "I got one!  You got one?"  Then the others would say "Yeah I got one, you got one?" Usually Greyson would start this and we would have to answer.  It was fun.  Anyway the heart cath wasn't too great but we got through it.  It is one small step in the Greyson recovery.