Greyson was born with a complex congenital heart defect. This is our journey through life with a CHD.
Got our echo and xray done. Waiting for dr J to look at them and then were headed home! Greyson is doing awesome this morning. He wasn't really happy to have his IV taken out or the huge bandage on his groin but he didn't do too awful.
He also stole my yogurt this morning but I'll take it. He has been eating like crazy!
Got to see our little man. He was just laying in his recovery bed calm as could be. Getting ready to move to the floor soon. I'm both sad and happy at how he has handled things. This morning it made me sad that he was so upset after he took the versed and so upset when we had to part. He has been such a big boy after the procedure which is not normal for him. The last few times I've come back to a crying for me and not happy at all. This was very different.
Look at those numbers!!!! He's never seen sats that high in his life! Look out everyone. Crazy greysons comin through.
Greyson is now nearly 7 months post fontan. He has been getting winded more than after the Fontan and his color is somewhat blue. His sats are running in the mid 80's. Yesterday we walked up a flight of stairs to my moms office and he was breathing pretty heavily when we got up there.
So we are headed up to stl to have a cath done and either close the fenestration they left open during his last surgery or he had some small collaterals before surgery that were just too small to coil and they may have grown and need attention now. Either way we are hoping to get the issue handled today.
The small issue we have is a little runny nose and some coughing. Hopefully they will still do it. I spoke with beth and she said if its not green (infection) then he should be fine. Of course there is still the chance he might be sent home. Fingers crossed we get to stay and get this taken care of. Ill keep updating throughout the day.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
