Saturday, September 1, 2012

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. 


Wednesday, August 8, 2012

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.


Friday, July 13, 2012

Catch up and new news...

So first off let me apologize for not making an entry sooner.  Yeah I know it has been 3 months since I made a post.  This one won't have any pictures since I can't seem to find the time to get on here enough anyway. 

Greyson had a cardiology appointment on June 29th.  We brought up the fact that Greyson gets VERY winded when he runs, since he doesn't know how to walk, a short distance.  He said that they had always been a little worried about what Greyson's lung pressures would do and they can put him on some medication to correct it but would need to do a heart cath to check the pressures and make sure there is nothing else going on in there.  He did say that they may have to balloon something or put a stint in and that would cause us to have to spend the night.  He wants to look at his Glenn surgery to make sure that every thing in there is the way it should be and said he can't get a good look at that through an ultra sound. 

We also discussed with him if it would be better for us to see him at Cardinal Glennon rather than at the pediatric clinic in Jefferson City.  I am worried that his next appointment would be in the winter months and I don't like to take my kids to the pediatricians office during those months.  The hospital will still have sick children, with colds and flu's, but the cardiology office shouldn't so I feel better taking him there.  He told us that bringing him to Cardinal Glennon will allow him to do further tests if he should want them rather then trying to get all the information from their portable ultra sound machine.  He said they have better ultra sound machines at CG as well.  So from now on we will be making the trek to St. Louis for all of Greyson's appointments and care. 

I got a call from Jodi in the Cath Lab today and they have scheduled Greyson's cath for August 6th at 8:30 am.  We should plan to spend the night in case they find anything they do need do while they are in there.  At that hour though I think we can just drive up the morning of the cath and spend the night if we need to.  I guess I should have asked where he would go after the heart cath so we could decide if we needed to get a room or if me and Nate can just stay in there with him.  I am sure that is likely what will happen anyway. 

The cath was scheduled for August 29th  (Papa Dave & Grams Birthdays) but Dr R wanted it within the month so they changed it up.  I have to admit I am obviously worried about it but I will be glad to get it taken care of an hopefully get him on some medication to help him get around with less work. 

We are doing the heart walk again on August 26th.  We have been selling Team Greyson wristbands and have made over $400 by selling those.  There will be a benefit the weekend before the heart walk that we will be able to raise even more money for CHD research.  If you haven't made a donation yet, many of you have and we really appreciate it, let me know and I can send you the Team Greyson link. 

I will update the blog again with some pictures, hopefully, soon and will be updating it through out the day of his heart cath. 

Thanks for checking in on Greyson.


Monday, April 9, 2012

Closer to 2 years old then 1 year old & Easter

So Greyson was officially 18 months old on the 7th.  Where did the time go.  I remember so many things from before he was born and after that it is hard to believe it has been so long ago that all those things happened.  Either way I am glad they are over and we can move on.  I have picture frames on the wall with the kids newborn, 3 month, 6 month, 9 month, 1 year, 18 month, and 2 year pictures in them.  Addison's is all full (and I need to get another frame to start the 3, 4, & 5 year pictures) but Greyson still has 2 empty spots in his.  I used to have pictures taken of the kids but now that we got this great camera I use all the time, we take our pictures our selves.

As I was trying to decide what Greyson should wear for Easter I came across an outfit Grams got him. Too stinkin' cute!

Addison wanted to wear a dress but we don't really have a use for frilly dresses so we don't buy them. She wore a comfy dress and took other clothes to change into to play later.

We had tons of fun dyeing eggs at home on Saturday night and then finding them the next morning along with all the fun stuff the Easter bunny brought them. I seriously think the flip flops were favorites.

Sunday after we did our Easter thing at home we headed up to Aunt Sharon's house for our usual Easter gathering. The Easter bunny leaves clues in eggs all around the farm for the kids to find and then their basket is waiting for them in the end. Addison really enjoyed it, although her blondness showed a little Ha!

I told Addison the Easter bunny pooped out plastic eggs all over the back yard and she could go gather them. So we went down to get the eggs and she kept saying "Why are we doing this?" I think she said it 3-4 times through the short process of gathering the 100+ eggs (along with her 3 other cousins.) After we showed her they had candy in them she understood a little better why we were doing it.

I will leave you with a few more of Greyson's 18 month pictures. I think the one at the top there will make the wall, though I did get a few more great pictures.