Loving the energy!

Lucas is doing great. Honestly, besides being a little pale you wouldn't know he just had heart surgery. He is happy and has a lot of energy. He is a little pale because his blood count is low. They were fine with his levels, they weren't low enough to transfuse. The reason he has a low blood count is because his chest tubes drained for so long. So, he was loosing small amounts of blood through those for several days, well it adds up when you are only 3. The team said as he starts eating more and getting back into a sense of normal being, they will come back up. He already looks less pale than he did. The slight problem is he cant' have green leafy vegetables because they interact with the coumadin, and he can't eat red meat because there is too much fat in it. So, he is taking his vitamin and hopefully he is getting enough iron.

Every day when he wakes up he says "we're not going to see the white nurse today mommy?" He calls the phlebotomists "white nurses" because they wear white lab coats. He does NOT like the "white nurses"..ha! We do have to go see them this week to get his INR level drawn, but he doesn't know this yet.

We have follow up cardiology on Friday. He is being such a little trooper about the no fat. He doesn't even question it. He did put on a few pounds when in the hospital, but we're pretty sure he has since lost that again, because he getting to be more and more active and he is barely getting any fat. We are thankful our kids are such good fruit and veggie eaters to begin with, it really helps that I don't have to put up a fight every time he needs to eat.

Yes, he needs a haircut beyond bad....but that will have to wait just a few more weeks until he can be out in public again. His hair is wild, but I think Claire's is more wild..ha :)

Headed home

I can't believe it, but we're headed home!! Lucas' X-ray looked great this morning.

Happy 3rd Birthday Lucas

Lucas turned three years old today. What a wonderful three years it has been. He has filled our lives with love, happiness, spunk, A LOT of personality, and amazing courageousness. Lucas has been amazing the past few days. All of the nurses LOVED him so much, he just chats and chats with all of them. Several nurses just stop by even when they are not taking care of him just to chat with him.  One of his favorites brought him fat free frozen yogurt today for his birthday (because he can't have any fat). My aunt brought him fat free angel food cake with fat free whip cream and berries... mmm mm amazing! He got tons of presents and lots of attention today. On rounds all of the doctors and several nurses sang to him. Then they all just chatted with him, barely even talked about anything medical (a nice change) and then the fellow said.."he is way too good to be here anymore." 

Last night before we went to sleep Peter and I decorated his hospital room, We hung streamers, banners, and cards he had received. When he woke up he was so happy to see it was his birthday.

No words can describe our feeling for our son. He is beyond words. He is smart, funny, witty, stubborn, very brave, and SO loving. He is like no one we have met before. To say we are proud of him is an understatement. I don't even feel like words can justify our feelings right now. 

Lucas decided today that he wanted to walk all day. He walked to each of his nurses and gave them hugs goodbye, he walked to the elevator and pushed the button for the first floor, he walked to the parking lot, and he walked to our room at the Ronald McDonald House. Yes, he has been discharged from the hospital and we are all sleeping together under one roof for the first time in a long time. Can't wait to get our Claire Bear and Cooper dog back soon!!

To be at a children's hospital is very humbling. Even though our son has a severe heart defect, once you get here, you feel like that is nothing. There are amazing families here that go through so much more. The families we have met are inspirational with their perseverance and faith.

We will stay in town for a few days and follow up with a chest x-ray and blood draw on Wednesday. If all looks good we will head home. If not, we will deal with it from there. 

Happy 3rd Birthday Lucas. You are Mommy and Daddy's true Hero! Love you bubba!!

Doing great!!!

Lucas got both of his chest tubes out this afternoon!!!!

We even got word of the "H" word.. Maybe tomorrow???? We may stick around the area for a few days to follow up, but haven't decided yet. Praying for a good night, and good echo and X-ray in the morning!

Day 8-gratitude

We could not be more humbled by the number of people who are supporting us. Family, friends, colleagues, fellow heart families etc. It makes us truly feel like we are not walking this journey alone. Thank you to each of you who loves and cares for Lucas and our family. Lucas has gotten so much: presents, balloons, cards, memos, face time from special people, visits from a lot of wonderful people, time with a lot of family and friends. He feels the love, we can tell. And it certainly helps lift his spirit and strengthen his healing!

We are getting a bit (ok, a lot) of hospitalitis. We want to go home !!!! We so want to return to our jobs and our lives as we know it.  I know it is weird, but I really want to sweep and scrub my kitchen floors and dust.. ha, it is the little things. I know Peter is missing his work, but he is trying to keep up on it from afar. It is amazing the day to day things you miss when you are deprived of them.  Hopefully, it will be sooner than later, but for now we just wait for those chest tubes.

Lucas still has drainage from both of his chest tubes. When I asked the team this morning how long they think it may be until we pull the chest tubes they said it could be a day or two up to a few weeks. Goodness. It is really difficult, because Lucas is wanting to return to playing normal, but his body isn't quite ready yet. All of his grandparents are here this weekend, which of course he is eating up. He is requesting to walk everywhere we go. He walked all the way from the play room to his bed pulling his wagon of tubes. He is amazing!

We were warned from several people about the fontan hospitalization. Our surgeon directly told us "it is frustrating because he will be ready to go, feeling great, eating wonderfully, but he will have to stay because of the chest tubes." And that is certainly the case right now.

But, it is in times like these that you have to step back and look and be thankful for everything we have. Our son just went through major open heart surgery a week ago and now wants to push and pull wagons around the hospital. We have a daughter who is an AMAZING trooper through all of this. And, we have amazing support! As easy as it is to get down, we have to remember how incredibly lucky we truly are!

Claire has been such a little angel. She has been 100% off schedule and adapting to change every day depending on what Lucas has going on. We feel incredibly guilty for trying to have her here with us, so my parents (thank goodness for them) are going to take her for the remainder of the time. She just can't stretch her legs enough around here. We really went back and forth as to what to do because she has an incredible ability to make her brother happy. He just laughs at her. But, she will be much happier with grandma and papa for a little bit until we get home. She has been a genuine trooper. We will miss her sweet smile like crazy. But hopefully it is just for a very small amount of time.

Thank you you to all of our family and friends for the love, support, prayers, positive thoughts, sweet treats, gifts, meals, time, etc, etc, etc. We couldn't be more thankful!

Random Photos

Here are a few pics from my phone from the past few days.  Since I am not sending this from my regular computer, I have placed the captions the same order of the photos at the bottom of this post.

1. Thankful Claire goes with this very unnatural flow we are in right now.

2.  Lucas got to meet Carly  the golden retriever. He couldn't get enough. Carly is part of the pain management team. Unlike our golden, Carly gets groomed weekly so she's really soft.

3. Sweet girl, out and about while Lucas naps.

4. If you notice in a lot  of the pics of Lucas he has a sheet or something on his chest. He always wants something on him there. We think it is sort if like his security blanket, like no one can touch  him or give him owies with that on.

5. Sats in the 90's. The last time we have seen this was when he was just a few days old. 

  

Post op day 7

Lucas is getting stronger and stronger. He told us today "I don't want to be in bed anymore." He requested to eat lunch in a chair with the bedside table stand. Love that. We spent a lot of time out of the room today. Playing, walking, coloring, cuddling, reading books on the couches, and playing House and cars with daddy in the play room. He is balancing and taking several steps on his own. His only real limitation are the wires, tubes and cords we have to drag behind him. His legs are still a little shaky but getting better. Anyone who's been in bed for several days will need Bit of time to regain leg strength. He's doing great , he is motivated to play!

Today as I was trying to get him to nap he said " mommy, after all this I won't get out of breath anymore when I run." so sweet. Also today when we were out an about he looked down at his chest tube and said, " is that my blood" I said yes, then he said " coming from my chest?.....I think we need to take it back to the room and dump it in the trash" I find that one funny because they are always talking about how much his chest tubes are "dumping." he picks up on everything.

Day 5 & 6

Yesterday Lucas had another good day. Still a lot of chest tube drainage . He is feeling better each day. We went to pre school yesterday morning. ( my pictures are on the camera so i cant post them right now.) He is slowly getting his strength back. On tuesday when he tried to walk he couldn't . It looked like his body was so used to being in the supine position that his equilibrium was so off, almost like he wanted to lean way back when trying to walk. He cried when he couldn't walk, I think it was frustrating for him. Yesterday at preschool he was motivated by thomas the train toys and took some steps.

Today has been good also. Got to get out for a wagon ride for a bit, we read books and cuddled in a little common area with couches. He is Such a little trooper.

We are adjusting to this diet. It is just 100% opposite from how we usually eat. He can only have white bread (wheat bread is on the bad list ) and he can have as much sugar as he can eat. They actually recommend eating a lot is sugar (we usually really limit his sugar, I mean I still dilute his occasional juice for goodness sakes) only because he turns into a wild man with too much sugar. The reason for now increasing his sugar is to replace the calories he is not getting from the fat. The dietician recommended adding fat free substitutes such as ranch or fat free sour cream to substitute not being able to cook with by olive oil, etc? He cannot even have "good" fats like from nuts or avocado. This is just different from the way we normally eat. We generally try to stay away from foods high in preservatives and artificial sweeteners, but a lot of the fat free foods are really high in these things. But, oh well we will what we have to to get him better. So far he hasn't complained too much about it. when he asks for pancakes, or even Cheerios ( yea they are in the bad list ) we just say they don't have them here. I hope he accepts that answer when we go home. I am going to have to empty out all of our "bad foods" like cheerios, wheat bread, almonds, etc out of his view.

The one problem that is going to be an issue is obviously Claire cannot follow this diet, and they always want what the other is having, so we are planning on buying identical things for them but one version for Claire and another for lucas. Like regular and fat free string cheese, yogurt, milk, etc. so hopefully it won't be that big of deal.

We have had tons of great family and friends come to visit. Lucas is one lucky boy!

Day 4

Yesterday turned out to be a bit of a better day for Lucas. We had a fabulous nurse on Monday night who I think helped to regain his trust. He actually smiled a few times. Later in the day after his afternoon nap we got to get him in a wagon and take a walk. Today we are hopefully going to make it to the play room or the pre-school.

We did get some news yesterday about a small bump in our road. Yesterday morning the nurse noted a slight cloudiness in Lucas' left chest tube drainage. On rounds, they didn't seem overly concerned but decided to have it tested. Unfortunately, the fluid is what they call chylous, meaning high in fat. So, Lucas has a chylo thorax. Essentially what is happening is his lymph duct near the site of the surgery was either stretched or nicked during his operation. This particular part of the lymph system is associated with fat/protein drainage. So essentially Lucas has lymph (fat/protein) drainage into his pleural space where his chest tube lies. The big bummer is that this type of drainage does not respond to diuretics like normal drainage does. So, you just have to let it runs it's course. The one "treatment" for it is limiting fat intake. He has been put on essentially a no fat diet, he can only have 5g per day.

This diet will have to continue for at least six weeks at home, after we get discharged. Unfortunately, kiddos with chylous drainage often have to keep their chest tubes in longer because of the "slow leak" they experience. So, we are just trying to be patient with the situation. It is just hard because he did so great during the surgery, so great in recovery, seems to be bouncing back very well...and then you have something like this that is going to set us back a bit, and will take longer to resume "normal life" after discharge.

They also are limiting Lucas' fluid intake to 960ml/day in order to limit the build up of fluid in the pleural space. We were warned prior to the fontan that the chest tubes will be the most frustrating part, and indeed that is what is happening. He is looking better, feeling better, finally eating fully...and now he has to have no fat and very limited liquids. It is hard because this whole time when talking about the surgery we have been saying that he can order whatever he wants, that they have anything he would want to order. We were trying to put a positive spin on the hospitalization. So, when he asked for pizza last night, the fact that he got a hard piece of cardboard chicken didn't fly to well.

The fluid limitation is hard because both of our kids drink water all day long. And now that Lucas is coughing a little bit when he needs to clear his lungs, it really hurts him to cough. He likes to hold his little cup of water and take a sip when he's coughing. But, we have to count every ml that goes in so we'll need to be careful.

Yesterday on his wagon ride he started coughing and coughing. He was just crying asking for water. Who denies a three year old water? I get the reason, but again his age makes this all really hard and he doesn't need anymore things to be sad about.

Overall, yesterday was more positive, just some tough news to swallow. It sounds like the chylo thorax is not that well understood as to what exactly causes it and what it takes to fully stop it. But, they have found that limiting fat intake seems to be the key in getting it to stop. When we resume a normal diet at home he will have to have xrays to make sure he isn't getting another chylous effusion.

One day at a time. But, the most important thing is that the surgery went well. Lucas seems to recovering from that very well. Now we just have to do what we need to do to get these chest tubes out and get him feeling better. 

3 cont...

I don't think anyone could have prepared us for the amount of sadness Lucas is feeling. I never expected such a huge difference in his emotional state. As I have mentioned in previous posts, yesterday and last night were very busy. Lots of lines being pulled, tugging, pulling, dressing changes, 2 IVs infiltrated, central line being pulled, constant vital signs and lung auscultations, not to mention the extreme constipation he is enduring...apparently it is all adding up. I think he feels 100% out of control...and he is almost 3..the age where control and decisions are very important. People walk into his room, do things to him without warning him and act like it is no biggie. Well, let me tell you, it is a biggie.

He got moved to the floor this afternoon (see he is a stud) but before doing so a nurse walked into his room, started unplugging everything, moving everything, getting him ready to move, not even really acknowledging Lucas (which would be no biggie to you or I) well we could see in Lucas' eyes he was nervous.. like what is this person going to do to me now. Then we told him that he has been such a big and brave boy and is doing so well that we get to get out of the ICU..he proceeded into a full meltdown. Screaming.".Don't move me.. I don't want to go, don't do it". He feels like he has no control over anything. It is absolutely breaking our hearts. I can't see my son like this.

When we finally got up to the floor, he got put into a room with 4 other babies..it was the only space they had left. Remember how hard we worked a few days ago to get him out of the baby pod. Well, we are now back to square one. Lucas wouldn't even look at me when we got up there. He seems so intensely sad right now. I think yesterday was too much too fast.

We proceeded to have the child life specialist paged. She saw him after his cath a few weeks ago and they sort of bonded. He just happen to be sleeping when she got there  (he hadn't slept since 3am last night) so she is going to come back. He needs a friend. Someone who's not going to poke, prod, or move him. She said maybe in the next day or so we can head over to the pre-school or play center and have some fun. Make him feel like he is still a 3 year old little boy.

I just lost it when we got to the floor. I have held it together pretty well this whole time. But, my son is not even 3 full days post open heart surgery..give the boy some slack. Not to mention I have so much guilt about not getting to spend enough time with Claire. I am feeling pretty torn, not to mention tired.

Lucas is doing amazing, I just wish he felt amazing. It is incredibly hard to see him like this.

I think once he "gets things moving a little better" he will feel better. He is so backed up, but just cries in pain. We have tried stool softeners and suppositories. And nothing is fully helping. I have heard that the way the blood flow is changed with the Fontan it can cause some constipation. The bottom half of the body is adjusting to the new blood flow. I will spare the details, but he did go a bit yesterday and I felt like we should have been in the Labor and delivery unit...

I can't help but cry when I think about the change in his attitude, just this afternoon he won't look at anybody, he answers most questions with a head nod instead of words. I pray he is feeling better and can progress enough in the next few days to start getting his chest tubes out. I think when that happens he can move more and get up and start feeling a bit more normal.

We want our feisty, stubborn, lovey boy back!

Post Op Day 3-Cuddle Bug

We got to cuddle with our little man today! Lucas has been down and asking to be held every time he had pain or checkups done on him. He was so happy to be held and we think he finally felt safe. He even fell asleep on me for quite a while.

Yesterday was a day of progress! Lucas is recovering wonderfully, they started him on toradol two nights ago and that seems to have really helped him. Since starting it he hasn't really complained of his throat hurting much which was his primary complaint.

He had his common atrial line pulled yesterday, his arterial line was self dc'd by Lucas on accident. It got caught on something when he was trying to get comfortable. One of his IVs was hurting him so they took that out. All of his IV fluids have been stopped since he is tolerating fluid and foods. They are planning on pulling his IJ central line today, he had labs drawn from it this morning and if his labs continue to remain stable he will get that line pulled. He had his sternum dressing removed this am, and chest tube dressings changed. So indeed yesterday and this morning have been productive....but with all of that stuff going on means that Lucas is constantly being messed with. I am not sure if it the constant stimulation or what but he is really tearful. It's hard because the parents have to leave for shift change which is 30 mins two times per day, well Lucas just cries when we leave then I feel like he is mad at us when We get back.

They are trying to figure out what to do right now in regards to pulling his central line. Lucas' IVs don't pull back blood, and he will need daily lab draws. Right now the central line can be used to draw blood but once that's gone then if he doesn't have more venous access he will have to get poked daily...which is not ideal obviously. So we wait for a decision.

Lucas is at a really hard age for all of this. He keeps asking me to cuddle with him. Honestly there is nothing I want more than to snuggle with my little man! Maybe later today. Fingers crossed.

Overall he is progressing well. Chest tubes are still putting out quite a bit so we need to keep a close eye on those. But he's eating, and drinking and the best part is we've even seen a few smiles.

Lucas is still in a lot of pain, it is so hard for me to see him like this. He did have a good rest today when they gave him sufficient pain meds. But We are having to walk a fine line because his abdomen is pretty distended and backed up so the narcotics are not the greatest if we're trying to get him moving, but the NSAIDs have a bleeding tendency, and Tylenol doesn't work for him.

It breaks my heart when he reaches up to be held!, he is doing so well handling this, we could the be more proud of him. Praying for better pain control tonight for our bubba. His little body needs to be able to rest and relax.

Post op day 1

Lucas had a good night. He was extubated at about 1am, this is of course after he tried to do it himself several times. That's our boy!

Pain is a big issue right now, as to be expected. They are going light on the morphine since he is extubated they don't want to suppress his respiratory drive. They also are holding back on the toradol (IV Motrin sort of) because he still is having some bloody drainage from his chest tubes and toradol can increase the risk of bleeding.

We are in a very busy pod type are area, Lucas seems very agitated and anxious, he really didn't sleep much at all last night, he was so agitated and antsy. They just gave him a dose of Ativan and he seems to be resting better.

I asked him if he wanted to run earlier and he said "yea", it was so sweet also after he was extubated last night he raised his hand and said I'd like to order a kids milk."

The team just rounded, the plan for the day is get his pain under control , let him rest, monitor chest tubes, and hopefully move to quieter room. I is hard for kiddos his age to relax in this loud environment. Overall he is doing great, such a brave boy!

He is our hero!!!

He's out!

He's out of surgery. It went great! We haven't gotten to see him yet! But, dr. Hanley seemed very happy and his sats are 100%!!!

Amen!

Can't wait to see our bubba!

Sent from my iPad

Surgery

Lucas went into surgery at 230, Finally after waiting all morning! I guess the first case took a lot longer than anticipated. Lucas was such a good sport, it's a good thing he ate so much yesterday, he didn't even mention food until about 130.

We were just told that they started the operation at about 350. It takes a while to get them prepped and ready with all of the lines and such. Please keep praying for Lucas! They anticipate a 5-6 hour surgery!

I just have to share this, on the way to the hospital this morning lucas says "so, what are we going to do today after my heart surgery?"

We feel so many emotions. Scared, anxious, worried, but the strongest emotion right now is peace and gratitude that we have such a strong boy and that we are fortunate enough to be at one of the best hospitals in the world for pediatric heart surgery!!!

Lucas was so happy and in such a great rambunctious mood this morning...it filled us with faith! When we got in the car this morning I was crying and my sweet boy said, " don't cry mommy, I will be fine!"

pre op

Besides the fact that our day started at 4am, it has been a great day. Lucas did so well for all of his pre op stuff. He actually gained a slight bit more weight since his last visit here, which is good news. He is doing great and super calm about all of this. His sats are lower after his cath 77% this time, they were 85% ish last time. He was slightly nervous about his xray, but that soon was gone once he got a new "mater" truck from the xray tech.  He was bummed about that fact that he had to have blood drawn again. Of course he was sad about it, but did great. This was the best phlebotomist we have ever had. She got a great vein first time and didn't have to fish. He is sitting next to me right now and said "mommy can you say I was a brave boy?" Yes, bubba, You were a very brave boy!

We went out to a nice outdoors lunch and Lucas proceeded to eat an entire personal pizza. My parents got here early this afternoon and we got to have a nice sea food dinner at a great restaurant, where Lucas proceeded to eat a second personal pizza (hey we're not going to limit the pizza intake the day before his heart surgery, if that is what he wants.. so be it). To say Lucas was happy to have company and all of this attention is an understatement.

It makes me so sad though because I think he has no idea what is coming his way tomorrow. We have really tried to talk to him about it.. but he seems to just move on from the idea sort of quickly. So, we will try again tomorrow. But, I am so thankful that he is SO happy right now.

A bit of a bummer, we are second case tomorrow. I thought we were going to be first, but they have a small baby that needs to go first. I TOTALLY get that. We have been there in the past with Lucas. It is really hard to have a baby wait and not eat. It will be hard for Lucas too, but at least he will have company to distract him.

So, we need to get to the hospital tomorrow at 10am. Nothing to drink past 8am. I will update as we can, but please keep Lucas in your prayers. Pray for sweet dreams for our sweet boy and that his body is ready for this. He is a HERO to us!

Update

Yes, we are still here. I apologize for our brief absence. We have just been enjoying being home and trying to keep everyone healthy. Lucas had a check up last Friday with our pediatrician to check on his ears.  His doctor always lets me look in...I love that. The left ear is getting back to the pearly color it is supposed to be, but the right one is still pretty red, but it did have a "reflex"." I guess when the eardrum is healing it appears shiny, and the shininess is called a reflex. So even though his right ear is still "angry" looking, it was very shiny, so he felt confident that Lucas should be ok for his surgery on Friday. We went ahead and made the decision to extend the antibiotics for a few more days to get him right up to his surgery. He will have his last dose on Thursday. Poor little buddy, he now asks "is this my antibiotic or my captopril?" Thank goodness he is such a good sport about taking his meds.

We had a nice quiet Easter, we are pretty much on quarantine. We would have loved to have taken the kids to the big town Easter egg hunt or hung out with lots of family or friends, but it will have to wait for next year.

Lucas keeps asking if after his surgery he is going to be able to run. It breaks our hearts that he even has to think about those types of things at this age. He knows he is having surgery this week, and I think in some ways it was good for him to have a little break away from the hospital before his surgery. I think it sort of calmed him down a bit. Now he sort of knows what sights and sounds to expect and has gained some sort of trust that life can be normal again after his hospitalization. He is also very excited about the new Thomas the train electric toothbrush that I got him to use in the hospital.. oh it's the little things at this age.

The pit in our stomachs is growing larger and the daily nausea has again increased. Please keep our little guy in your prayers. He is the absolute sweetest thing. Today we were eating lunch, and he leans over and says, "mommy I love you so much" totally genuine, then he just kept eating. Love that little guy. I know he will do great on Friday. He is such a trooper.

She's a natural egg hunter. No direction needed, she was on a mission to hunt. She had a little mishap with the side of the kitchen cabinet last week. She loves playing chase around the kitchen island and unfortunately she cut a corner a bit to quickly. It didn't inhibit the hunting abilities though thankfully.

Lucas not sure why the Easter bunny had to "plop" his eggs in the wet plants.

Claire turned 13 months on Friday. One of our favorite things about her right now is her innate ability to carry on a very "serious" conversation. She just starts babbling away and waving her hands, we have no idea what she is saying most of the time, but it is sure sweet to hear her talk and talk.