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.


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.

Tuesday, March 26, 2013

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.

Monday, March 25, 2013

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. 

Thursday, March 21, 2013

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. 


Friday, March 15, 2013

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 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.


Tuesday, March 12, 2013

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.

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 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 ;(. 
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 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.