Catching up

Ethan had a parent-teacher conference last week. Apparently he is really coming out of his shell and participating in the classroom activities. I was really happy to hear this! He is doing his activities with minimal reminders to stay on track. He has also started raising his hand to answer questions! However, when he raises his hand he puts his hand in the air and yells "Me! Me! Me! Me!" We definitely need to work on calm ways to get the teacher's attention! Honestly, I'm just happy he's listening to the questions and wants to give an answer! In addition to answering questions, he volunteered to read a page out of a book in front of the class earlier that week! He stood up and read to everyone at circle time. I'm so excited! :)

He was tested per the state requirements and apparently did not do very well. The teacher was not happy with the way the tests had to be administered and did not think they were accurate and fair for his age. She also feels that he does not test well because a lot of the things he missed on the tests he is able to do at home and privately in class. We definitely need to work on his math skills and higher number recognition. He's behind in that, so we'll incorporate that into his tutoring and working at home. We've been so focused on practicing his reading that we've totally neglected math! Oh well, at least he's really loving to practice reading his books right now! His teacher is a bit concerned about how he's going to handle the work load next year. She says first grade is so much more intense than kindergarten so she's not sure how he'll do. We will need to discuss this at his upcoming IEP appointment to see how much additional help he'll need to make sure he doesn't fall behind. I know we're going to be fully using Common Core at the school next year and those concepts will probably be a huge struggle for Ethan. Hopefully we can figure out a way to help him understand and not become frustrated.

Another issue we discussed was Ethan's outbursts in class. We struggled a lot with this in preschool. Then things calmed down and he was extremely quiet once he started his ADHD medicine. His teacher always said he was perfect in class - sat silently and never made a noise. Now he's apparently making weird noises like saying "boop boop" repeatedly as the teacher's trying to teach or write something on the board. Another thing he's doing is randomly whistling in the middle of class. The teacher does not think that he's doing it on purpose or even is aware of the fact that he's doing it. She tells him to stop making noise and he'll stop for about an hour before starting up again. I don't know why he's suddenly doing this, but hopefully we can get it under control quickly! Other than that he seems to be doing pretty well in school and seems to be enjoying himself!

After such a long time waiting, we went to see The Lego Movie! We were all so excited and thought everything was awesome! LOL! Ethan thought it was hilarious and plans on having the basement from the movie in his house someday! :)

We have had plenty of snow days from school to relax and hang out around the house! The kids have loved it, and the weather finally cooperated enough to let them play OUTSIDE on their snow day last week! :)

Since the big boys were all out snowplowing, the kids and I were able to enjoy a movie and "Taco Tuesday" picnic in the living room.

Callie also had a really busy weekend! Saturday morning she participated in the Greater Cleveland Problem Solving Competition. Her math teacher was able to select the top four students from each team of teachers. Callie was one of the two selected from her class. Each school had a couple teams of four participate in this. Thankfully our school hosted the tournament that happened in our area. Around 200 students showed up from the various schools. Callie and her team spent their morning working on math problems. They had fun and did a great job! :) I'm definitely so proud of her academic accomplishments! :)

She also finally was presented with her trophy for winning the school science fair a while ago! I'm glad that's all done with! :)

Callie's been pretty busy with Girl Scout activities too! Last week they volunteered at a local church to serve the free community meal to those in need. I think the girls got a lot out of it and I hope they continue to volunteer there in the future. I know they return in a couple weeks for another night of serving.

Saturday night I took her to Southpark Mall for a Girl Scout lock-in! Around 2000 girls attended the lock-in and they had a blast! Some stores stayed open throughout the night for the girls to shop, activities were available for them to do, they watched the Muppet movie at the theatre, and had a giant dance party with a DJ! Callie had so much fun and can't wait to do it again next year! :) 

When I was drying Ethan off after his bath last night, I noticed he had some big bruises on his leg and arm. I asked him what happened and he didn't know, so of course I immediately worried about his INR level! We took out the INR testing machine and started to do the blood work. Well, we kept getting an error code when we inserted the test strips. We then realized that the strips expired a month ago! I couldn't believe it! These are not cheap - in fact they're $175 for a pack of 24. The entire 24 pack was useless. I could just scream. Fiona found the container of expired test strips and decided to eat them this morning. She is SO lucky that we knew they were already expired! I probably would have lost my mind if they were good strips!

Well, I guess it's time to order the next set. :/ Since we weren't able to get a reading on his levels, I had to take him into the lab this morning for a full blood draw. He definitely wasn't happy but he did SO well! The nurses there were excited to see him and all were shocked how big he was since the last time we were there! :) They always are so nice and make him feel special! We sat in the chair together for the test. While they were feeling his arm to find a good vein he said "I don't think I'm feeling very brave today". He was though because they poked him and had to maneuver the needle around 3 times before hitting his vein. He didn't cry once! I couldn't believe it! Of course he earned his bouncy ball as a prize afterwards, then we dropped him off at school. :)

I emailed the doctors and let them know what was going on. They let me know that his levels are great - he's at 1.8. That's actually a little low since our range was 2.0-2.5. But we're happy with it so nothing's going to change. :) Apparently he's just bruising from being his crazy little self lol! I was very relieved!

We're all dealing with some sort of cold in the house. We're all congested and crummy feeling, and Ethan of course still has his nasty cough. We're continuing with his breathing meds and hopefully we can get his lungs cleared up soon!

I think that pretty much sums it up. Now we're just finishing up goalie training with Callie, preparing for the start of the spring soccer season, school, girl scouts, and getting healthy. Please keep us all in your prayers and I'll keep you updated with any news!

Ethan's Journey

It's Congenital Heart Defect Awareness week! Even though I wanted to do a LOT for it this year to raise awareness and support research, once again I failed at that. I did however update his CHD awareness video! Yay me! :) Here it is if you haven't already seen it on Facebook, or if you just want to watch it again. Make sure your volume is up because there's music that goes along with it.

I have just a couple other updates from this week.

Ethan had an great day on Tuesday! I picked him up from school a little early because he had his sleep doctor appointment downtown. Since he's in Kindergarten, the school has a child bring a buddy down to the office so they don't get lost and start wandering the halls. Ethan has walked down with random boys from his class throughout this year - I have to get him from school pretty often due to his appointments. I always ask him who brought him down and he never knows the kids' names. They also walk down the hall like they don't know the other kid is there. Ethan doesn't look at him or acknowledge him in any way. Tuesday however, I was shocked when I saw Ethan walking toward the office with a girl on each side of him - HOLDING HANDS! I could have cried. I wanted to take a picture, but there were other parents in the office and I didn't want them to think I was some weirdo taking pictures of their kids (if one of the girls belonged to them). :/ I was so happy though! When they let go of hands in the office, I told Ethan to say bye to them. He did! On our way out to the car I asked who the girls were and he knew one of their names! I know this may not sound like much to most parents, but Ethan has never told me the name of ANY child in his class. I assume it's because he never interacts with them enough to learn their names. This made me so happy! :)

The appointment also went really well. Ethan was in a VERY cheerful mood, which we don't see a lot so that was awesome! He was laughing and very talkative! He spoke to the nurses in the office, looked at the doctors when they were talking and responded to them, and even interrupted me when I answered questions for him! It was like a completely different child! :) He even sang along with our entire bedtime song!Either way, I hope we see more and more of those days. It was really great to see him so happy and comfortable. I don't know what brought it out, but it was great!

The doctors did not want to increase his melatonin even though it's still a 50/50 shot as to whether he'll go to sleep easily at night. I do have to say it's getting better and better, so hopefully we'll just continue to improve. He's extremely sensitive to his pre-sleep schedule, so I know that usually as long as we keep that perfectly he should do well. It gets hard especially in the summer since Callie has activities in the evening and that would completely mess up his schedule. He's supposed to sit in a darkened area with no stimuli - no TV, no movies, no electronics whatsoever. He basically just colors at the kitchen table with the light off for at least an hour and a half before bed. I don't know how that will work in the midst of soccer practices and evening softball games - as well as the sun being up later at night! We'll see how things go.

Tomorrow I have a conference at Ethan's school. Hopefully I can hear that progress is being made and he's doing well. He brought home another "Shining Star" on Tuesday as well, so hopefully that means he's behaving himself and doing well in school. I know he's really doing well with his reading at home. He reads a story every night to me - either a "Bob" book or "Dick and Jane". He thinks they're hilarious and he's reading almost all the words by himself! He's making huge strides and I hope things continue to improve! :)

Ethan was invited to a birthday party for a boy in his class. Even though I tried to convince him that it would be fun to go, Ethan keeps insisting that he's going to be sick that day. I didn't want to push him into going and stress him out about the socialization, so hopefully he'll have another chance when he's older and maybe more comfortable in those settings. Callie finishes up her basketball season this weekend and has big plans for next weekend. I'll post about that when it's over! :)

We had a new baby cousin born into the family (Luke) this week. He is currently in NICU, but doing much better now. Please pray that he continues to improve and can go home very soon! :) Also we just found out that one of Ethan's heterotaxy friends is in the hospital with RSV. Please keep Vivi in your prayers that she feels better and can go home soon! Thanks for all your prayers and support!

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Neurology

We had our neurology appointment on Friday. Ethan was thrilled since that was the first day school was open since Christmas break started - and he was able to miss it again! :) He's already threatening that he's going to be too sick for school in the morning. Sorry Ethan, not going to work! He has not caught on yet that trying to play the sick card the night before makes it a bit less believable!

Anyway, the appointment went really well and we discussed a lot of concerns we've been having. One of the things we discussed was his headaches. Dr. Friedman feels he's still having too many headaches, so we increased his medicine to help with that. Hopefully it does the trick!

Another concern that the doctor raised was the fact that he hasn't gained any weight in the past two appointments. He still was at the same weight at this one even though he grew in height. This makes over 9 months of no weight gain, and this is not something we want to hear with a heart kid - he needs the weight! In addition to increasing the headache medicine dose, we are also giving some of it in the morning now. This is the medicine that has a side effect of increased appetite and weight gain. Hopefully with the new dose and taking it in the morning it will help make him hungrier to eat throughout the day! The medicine is supposed to also cause sleepiness, so hopefully it will help with his sleep issues at night! We can hope!

We discussed his anxiety and tics that he developed. Dr. F brought up the fact that this is really common in autism and it's not really something to be too concerned with. The medicine that would help ease the anxiety and tics are not safe for heart kids. It affects the blood pressure so it is not even an option for him. I let him know that I didn't want Ethan on another medication anyway, so that's good news. He did let me know that these tics come in waves. They should ease off over time and only really return when he's overly anxious and stressed. He's already been improving with it over vacation, so hopefully it will keep improving and go away completely soon!

Dr. F also discussed Ethan seeing a psychologist to evaluate his autism. We've known that Ethan has had autistic tendencies - we've been discussing it for about two years now. However it is not severe autism. He is high functioning and mild thankfully. Even though it's not severe, we still need to address it. The psychologist will evaluate him and apparently be able to tell us where on the spectrum he is. This will help determine what kind of therapies or help he may need. Unless Ethan suddenly becomes social during the next six months, at his next appointment we'll set up the evaluation.

Other than that, we had an evaluation for OT again. We did this testing a year ago and it showed that Ethan would benefit from occupational therapy. His school did their own evaluation when I submitted the forms, and they claimed that he did not need it after all. I let the doctor know this, but he said that the school would only test for things that would affect his schoolwork. This includes things like holding a pencil and other fine motor skills. He actually excels in this so school denied the OT request. The doctor said to look into returning to outpatient therapy. He can receive therapy to help with his motor apraxia, coordination, and sensory issues.

Overall, the appointment went really well. Hopefully his new med change will really help out his headaches, weight issues, and sleep problems! Please keep him in your prayers for this! Also please pray for his anxiety as he returns to school. I know he's really nervous and stressing about going back. Once he gets back into the swing of things he'll improve, but he's gotten used to being off for so long it'll be tough in the beginning for him.

Here are a couple of pictures we took today. :) We went down to the metroparks to watch giant ice chunks going down the river. The kids (and I) were really impressed!

Trying to catch up!

Apparently the holidays kept me too busy for blogging this year!

Cardiology:

playing the computer in the waiting room

We'll start with Ethan's last cardiology appointment. It was a long appointment, but it went pretty well so I certainly can't complain! He had been showing signs of low oxygen saturation numbers for the week prior to the appointment. When we were at the doctor they took good readings - mid 70s for him in his right hand. However his left hand was low 60s. I almost always get around a 10 point difference in his hands, but just commented about it to Dr. G at this appointment. I assumed it was normal due to his anatomy, but Dr. G gave me the weirdest look which made me say perhaps it's not that normal after all! He said that Ethan does not have the anatomy to cause that issue. He was pretty confused and surprised as to why that's happening! Oh well, apparently it's nothing to worry about since it's been going on for years!

Ethan had an echo at the appointment. Things looked good, but they once again weren't able to get a view of his pulmonary artery. Hopefully it's still open and doing well! His SVC looked perfect though! YAY! This is the one in his neck that they just stented for the first time during his last cath.

Dr. G did talk about his upcoming plans. He said he is done with the caths for Ethan. There's nothing else he can work on in his heart cath-wise. He's basically been stented and re-stented everywhere possible, so the next step is the open heart surgery. There are no specific plans for this surgery yet - and we usually don't know the exact specifics until the day before surgery anyway! Things always change with him so much that it's hard to get an exact idea especially this far in advance. The basic idea is to do what we planned for him last winter. He was going to have this open heart before they decided to try a couple more stents instead. They will replace his conduit with a larger one and remove his aneurysm. We are going to wait as long as physically possible before doing the surgery. It will all just depend on Ethan and how he feels. We'll keep an eye on his sats, energy level, and echos to see when things start narrowing again and he needs the surgery. We don't have any idea right now how long it will be, but we're hoping to get like another year out of his heart the way it is! That would be amazing! :) We return to cardiology in 3 months for another echo and recheck.

That pretty much wraps it up for cardiology. Now it's just a watch and wait game.

Other medical:

Ethan has his junky lungs back. They were clear for a few weeks and that was a nice break! Now he's junky, coughing, and back to full-blown treatments and vest therapies. He's definitely not happy about that!

He had a rough couple weeks with his headaches. This was right before his cardiology appointment time. About a week after the appointment his headaches decreased again. Now we're back to just about one a week thankfully! He had a really bad one last week where he just curled up in a ball on the floor pressing his face into the carpet saying his head hurt so bad. :( I'm so relieved that they're not every day again! Hopefully we can keep them away.

Ethan lost his first tooth! It took so long for this tooth to come out because he would never let anyone touch it! It finally popped out when he was trying to pry a Lego piece off another Lego piece with his teeth! Thanks to his Coumadin it bled quite a bit. I was surprised since it was so loose for so long! Well, after some wads of gauze for a little while it stopped and he was pretty excited that it came out! The one right next to it is now pretty loose. We'll have to see if he works on getting this one out faster than the last one!

We're still dealing with on and off sleep battles. He'll go a few days of going to bed well and sleeping most of the night, then suddenly it will stop and he can't fall asleep at all for a week! Now I've resorted to rocking him to relax him before sleep and bribery. He also has his lavender scented Scentsy buddy to cuddle with to help relax him. He gets a coin for his new piggy (truck) bank every night he goes to bed and sleeps through the night. So far he has four coins!

Christmas prep:

We had a very quick but fun Christmas season! John and I were able to take Callie to her first concert - TSO! My parents and brother-in-law also came with his girlfriend. It was a great show!

It seemed time really got away from us this season. We didn't even get to put all of our decorations up this year!

The kids went to a Christmas activity at the metroparks. They had a lot of fun doing crafts, decorating and eating cookies, and of course seeing Santa! Ethan was pretty stressed out and anxious about the whole experience, but he really wanted to tell him what he wanted for Christmas. The Santa must have thought Ethan was crazy because he was super nervous and doing his anxious face tic thing he developed recently. It's so frustrating, but hopefully he'll calm down soon and stop doing it. Well, the Santa was really good and patient. He kept talking to Ethan and let us take lots of pictures to get one where Ethan was somewhat smiling. :)

We also attempted professional family pictures this year too. LOL, that was an experience! We always just take our own at home in front of the tree or something to send out as Christmas cards. Well, since I had a coupon we decided to go to Portrait Innovations this year. I expected to have the place to ourselves during our appointment time. Silly me. There had to be at least 40 other people there - all the families and tons of kids running around! That sent Ethan (already in stress mode from the thought of going out and taking pictures) into super anxiety. He apparently forgot how to smile completely and just kept making weird faces in each picture attempt. It was insane and he just couldn't calm down and relax with all those people around and watching. It was definitely not an experience we're going to have again for a LONG time! They took 79 pictures and only 2 were acceptable. Granted, the ones of just Callie by herself were gorgeous! I don't know how I can have one child so photogenic and the other one so not. LOL!

Callie also sang in our church's children's program the week before Christmas. She was so excited and they did a really great job! She's in the gray dress with the red tie around the middle. She's in between the girl in the black dress and the boy in the sweater vest. I took this before the rest of the kids came in and blocked her from view!

We had a great Christmas seeing our family. The kids of course were inundated with gifts and they've been very busy playing with them all through this school break. We also were able to celebrate my grandma's birthday and a New Year's dinner at my other grandma's! It's been very busy, but a lot of fun! They also have an extended Christmas break from school since the cold weather has cancelled school today and tomorrow as well!

 

 

We have a neurology appointment and genetics appointment this Friday morning. I don't know what all to expect for this, but hopefully it goes smoothly!

Friday is also John's birthday! :)

I'll post up after his neurology appointment to let you know how things went! Please keep us in your prayers! Please pray that Ethan's lungs clear up, his headaches stay away, and that his sleeping can improve! Also please pray about his anxiety. I don't know what can be done about it at this point - I think he's probably too young and unwilling to talk to anyone about it to see a psychiatrist or something. Last but not least, please pray for Ethan's appetite. I know he goes through swings with it, but right now he is struggling a lot with it. Hopefully it'll kick back up soon and he will start eating again before he loses weight!

And if you follow me on Facebook you've already seen these, but here's some of what our naughty dogs have been up to as well.

 

 

Thanksgiving fun :)

So I know I'm really behind with blogging again! I'll start by trying to catch up with our Thanksgiving holiday.

John's family came to Ohio to spend a week for the holidays! It was so great to see everyone -- well almost. One of his brothers and wife couldn't make it. We filled the whole week with lots of activities, games, movies, and of course Thanksgiving dinner. It was a great week!

I was finally able to hold my brand new nephew. He is so sweet and calm!

While they were here we also celebrated John's mother's 50th birthday party! We had the family over for dinner, cake, and ice cream. During the party we noticed the police shut down the intersection next to our house. We quickly found out that a huge police chase had happened and the car caught on fire right by us! The driver escaped and was hiding in the woods around our houses. It was pretty unnerving since he was armed! Thankfully a friend of mine works for our local EMS so we were able to keep updated throughout the night. Luckily he was found the next morning about a mile away. Even with all the excitement we were able to have a good time at the party. :)

The next day we went to a baby shower for John's aunt. It was a great shower, but unfortunately I didn't get any pictures.

After that we went downtown to see the Christmas lights. It was freezing, but we walked around a little bit anyway. The kids liked the window decorations at the casino (Higbees) and had a great time seeing all the lights everywhere.

We definitely are going to miss having them nearby. It's always good for the kids to get together with their cousins!

The Sunday after Thanksgiving we were given tickets to attend the Browns-Steelers game! Brandon Weeden donated the tickets to Children's Cardiology, so we were so blessed to be given them! Unfortunately with Ethan still fresh from the cath and the weather being absurdly cold, the kids definitely weren't able to go to the game. We did find friends who were more than willing to come though! :) Even though it was freezing and the Browns apparently forgot how to play football, we still had a great time! Lots of hot chocolate and layers upon layers of clothing helped us make it through. We even made it up on the jumbotron! It was very fun!

Ethan returned to school and has been making big improvements academically! He learned all his color words and almost all of the first stack of sight word flash cards! I'm so proud! He does have a long way to go still, but at least he's working on getting better with it!

He was very proud of his Indian hat he made in class. :)

He's also started expressing himself through doodles on his schoolwork. I'm a little surprised it hasn't happened earlier since he loves drawing so much, but it finally started up last week. He brings home his writing assignment that the kids do each day in class. Suddenly his letters started making really strange squiggles and turned into trains, vehicles, and people being arrested! After two days of question marks all over his paper and comments about needing to do better from the teacher, I put my foot down to insist on no more doodles. Thankfully his Friday writing assignment had writing instead of drawings! :)

Callie also has been doing very well in school! She actually won 1st place in her science fair! She competed with around 100 other fifth graders and did so well! I'm so proud of her! :)

Medically, things have been going fairly well. Right after the cath he went for a while with only one headache! He also had great oxygen sats - ranging from 78% to 83%! Those are great numbers for him! However, a couple weeks ago (right after I returned a checkup email with his doctor) the headaches returned. He is back to having 4-5 headaches a week! I don't know what happened, but I'm definitely not thrilled about this. His sats also dropped right away. He went down to 58% to 64% for about two weeks. He had no other symptoms, so I was really confused as to what was happening. I emailed the doctor again to let him know about the change. I was also hoping to jinx it back the way it was before! So far it might be working - he was at 73% today! :)

He seems to be coming down with a bit of a cough this evening and was feeling kind of rough. He insisted he was getting a bad fever - although the thermometer showed he was fine. He also had a pretty bad headache this evening. Hopefully a good night's sleep will help him feel better for tomorrow!

We have a cardiology appointment on Wednesday. We'll do an echo and post-op checkup to see how everything looks. Please keep us in your prayers that everything looks good and he feels better. I have another post coming soon about our Christmas prep activities! :)

 

Cath #15!

We are home - thank the Lord! Here's a recap of the hospital stay. I hope it makes sense. I'm running on no sleep, so my brain is not quite working perfectly right now! :)

We went in yesterday morning at 7am for the cath. Preop went very fast - in fact, so fast that I didn't have a chance to take our usual pictures and Versed videos! I have one preop picture of John and Ethan in the waiting room.

Ethan did very well for his anesthesia. The Versed worked better than usual and he was so doped up he couldn't even say complete words this time! He was very relaxed and went to sleep without a problem. :)

The cath went very well! They ended up ballooning his conduit instead of placing another covered stent there. One side of the conduit was narrowing, so he ballooned it open to match the other side and there were no problems. Dr. G said this will be the last time we mess with the conduit. We'll watch how things improve and how long this lasts before having to replace the conduit with the open heart surgery again. This will just be a wait and see process. Dr. Prietto (don't know if that's the correct spelling of her name) came in on the cath again. She is the pulmonary vein specialist. She wasn't sure that the images of his pulmonary veins from the CT scan were as good as Dr. G thought. It was hard to tell for sure on pictures, so they decided to go and take pictures/pressures with the cath. They worked on accessing his pulmonary vein for over 2 hours but couldn't get to it. His anatomy is just so incredibly difficult it's pretty impossible to reach it. The only option for accessing it would be through his liver. I'm not sure what the eventual plan will be for this, but as of right now I think we'll be leaving it alone. That all might change at our next appointment, but as of right now I think that's the plan. At the end of the cath, they placed his 9th stent in his SVC. I saw the images of his SVC and was very surprised at how narrow it was! We saw the stent placed and opening, and it looks amazing now! :)

This could hopefully really help out with Ethan's headaches. Ethan has a neurology appointment in December for a headache and ADHD recheck as well as genetic screening. We can discuss the possibility of weaning off the Periactin (his headache medicine) to see if he truly needs it after all. My hesitation with this is his appetite has been much better on the medicine, so it would be a shame to go back to not eating!

Dr. G finished up with the cath around 6:30 and we were able to go back and see him in recovery. He looked really good! And we saw he still had his tooth! I can't believe that wiggly tooth made it through two intubations this week! :) We found out he didn't have any major arrhythmia issues this time. He had a couple rounds of irregular heartbeats but it was due to the catheter triggering it. They were able to get him back into his normal rhythm with just maneuvering the catheter and not needing any medications for it! Big relief! I was worried about it since we had those questionable rhythm issues at Monday's CT scan. Thankfully everything went so well!

After about an hour in PACU recovery area we headed upstairs to our room to "sleep" for the night. Yeah. Before we even entered the room I knew we were in for a long night. We shared the room with a little 3-yr-old boy recovering from surgery. He was in pain and had the highest pitched scream you could possibly imagine. We heard it all night long. But it's not like Ethan was sleeping anyway. Somehow he was WIDE AWAKE and starving all night long!

We stayed awake building Legos, eating, and watching "Beyond Scared Straight" on TV. Ethan loves jails and for some reason is very interested in that show!

He had IV antibiotics, groin pressure dressing removal, and an EKG scheduled for midnight so I didn't even bother trying to get him to sleep earlier than that. The doctor came in and did the EKG. She returned a few minutes later asking if Ethan's heart was backwards. I'm so used to our usual technicians doing it that I didn't even think to tell her it was. She said that explains a lot! She redid the EKG and I tried to get Ethan to settle down to sleep. He decided he was hungry and talkative instead. Around 1:30 our wonderful neighbors woke up. They turned on their lights and TV for the kid. I couldn't believe it! After about an hour of them acting like it was the middle of the afternoon, they turned everything back off and went to sleep. At 2:30 the child was screaming. He wet the bed, and this made everyone wake up to change all his bandages and bedding. This is not an easy and pain-free procedure on a little kid recovering from surgery! At this point my pity for the poor little kid was fading quickly. :/ We went back and forth between Ethan demanding snacks and the neighbor screaming for the rest of the night. Our nurse couldn't believe that Ethan didn't sleep a wink the entire night! With all the sedation in him we totally thought he would've slept through the night - or at least part of the night! That kid never ceases to amaze me!

This morning Ethan ate a big breakfast, played his new LeapPad game, and played with Legos some more. He was in a good mood, still surprisingly hungry, and still not tired. We went downstairs this morning for a chest xray. It was his first time up and out of bed, and he was sore. However, this was the very first cath he did not need ANY pain medicine! I was very pleasantly surprised by this! Usually he doesn't need much, but he's never made it through without a dose of Tylenol. He earned a prize of a bag of craft supplies from the xray lab for being brave. :) He was happy about that.

When we returned to our room, respiratory therapy came and did his treatments. Ethan wasn't thrilled with that since he hates treatments anyway, but this time the coughing really was irritating his throat. :(

Dr. Zahka stopped by this morning and dropped off some of his famous homemade cookies! They were delicious! :) He also did a happy dance for us over how great the cath went and how the stents looked! LOL

After a lot more lounging around, snacking, playing games, and watching TV, Dr. Golden stopped over. We discussed how great everything looked on the cath again and how well he was doing. We also discussed his hemoglobin levels. His heart had always made his body have levels of around 17. His reading at this cath (and apparently for the past few months to a year) have dropped to 13. We're not exactly sure the reasoning behind this decrease, but the topic of starting to take iron was brought up. We sent the orders in, but they have been delayed until a final decision is made on Monday. The docs need to determine exactly what dose they want him at as well as ensuring that it would be beneficial to take iron. I am wondering if any hereditary anemia is happening. I struggled with anemia throughout my life. In fact, the past couple of weeks especially I've considered getting my levels checked to see how bad I am right now. I'm have constant exhaustion, my persistent nausea, and chronic headaches. It may not be related at all, but it's definitely a possibility to look into. We'll find out about the iron supplement early next week.

After our meeting with Dr. G, we were sent down to have an echo done. Ethan walked the entire way down to the cardiology office for this! He was obviously feeling much better by this point! :) The echo went really well thankfully. I believe they were able to see everything they wanted and his stents look good!

After the echo we returned to the room to eat lunch. Ethan was thrilled about this since he was once again starving. LOL! I don't know where this sudden huge appetite came from, but I'm loving it! He ate a huge lunch and built a Lego dumpster.

Around 2:30 pm we were discharged! They pulled his IV, removed leads, signed paperwork, and sent us on our way! :) We stopped in the cardiology hall on the way out to see the "wall of heroes" or something like that. I can't remember what the display name was and of course I didn't get it in the picture. His picture and description was displayed! We were very excited! :) Famous LOL!

About halfway home Ethan's head was nodding in the backseat. The sleep deprivation was finally catching up to him. He fought it off and stayed awake for dinner. Then at 6:30 begged to go to sleep. We kept him awake until 7 but gave up when he fell asleep sitting up on the floor. He went right to sleep and hopefully will sleep really well through the night! He still has his pressure dressing on his neck because we were a little nervous to take it off right before he went to sleep. I'm sure it would've been fine since we haven't had any bleeding issues with it, but we figured it couldn't hurt to keep it on until morning. Hopefully it won't irritate his skin too much.

Thank you all so much for all your support and prayers! We are so appreciative of all the messages, prayers, and visitors! We even had our church pastors visit twice to pray with us! It means so much and we are so thankful for all of you! Please continue to pray for us for healing and continued great news! :) I'll keep everyone updated with how he's doing.

We return for a cardiology recheck on December 18th. That day will be his 6th anniversary of his second open heart surgery, so what better way to spend it than in the cardiologist's office! :)