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! :)

CT scan

Today's CT scan went well. Thank you all so much for your thoughts and prayers throughout the day!

We arrived at the Clinic for 8am registration. They took us right back and we prepped for the scan. We met with anesthesiology and found out it was the same one we'll be having for the cath on Thursday. The plan was for a short CT scan (should be a total of about 10 minutes of scanning) with medium sedation. He would be asleep but breathing on his own and easily awoken.

He took his Versed (happy medicine) to relax before being put to sleep. He was doing very well with it and became very loopy while watching Paw Patrol on TV and snuggling with me. :)

We went back to be put to sleep. He went down on the table and we went to give him the gas to go to sleep. He said "I'm not really in the mood for that right now." Well, tough it's happening anyway LOL. He did well with it and only said he was scared once through the mask. I hate that. :( I went and waited in the waiting room for what was supposed to be 20-30 minutes. After an hour I had them check back in the room to see what was going on. He had just gotten out and I went back to see him. They said they had to intubate him (put the breathing tube in) because they had to give him more anesthesia. They weren't able to see the small vessels that they wanted without knocking him out more apparently. He was OUT!

Thankfully they were able to extubate (remove the breathing tube) him quickly and easily so that wasn't a big deal. It did take a long time for him to wake up - and we actually made him get up by wiping him with a wet rag and irritating him. He finally woke up enough (with some bribes from the nurse to pick a prize from the treasure chest) to somewhat sit up in bed. He kept flopping over, but we propped him up with blankets and kept trying to keep him awake. He attempted coloring, but was very tired and out of it. Poor little man!

He also was very confused about what was going on. He would randomly look around and ask where we were. He also asked multiple times when we were going to do the donut test (that's what he calls the CT scan machine). He didn't believe me when I told him he already did it LOL!

Even though things went really well and he's doing great, he did have a couple questionable rhythm concerns. About every 15 minutes he would have an irregular heart beat (PVC). Once we started waking him up they increased from that every 15 minutes to all the way to about every 30 seconds. They said it was most likely due to the anesthesia, so hopefully that's all it was. I will be asking Dr. Golden/Dr. Zahka about it this week.

They unhooked Ethan and discharged us pretty quickly. In fact, he was still basically sleeping and flopping all over the place when we were supposed to leave!

Thankfully they gave us a wheelchair since he couldn't walk. I wasn't very comfortable leaving the hospital with him that out of it still, so we went down to the cafeteria for lunch. He was starving so he ate an entire McDonalds happy meal and still wanted to go to Starbucks after that! I told him to hold off on the Starbucks because the last thing I wanted was for him to overdo it and puke all over my car!

We headed out to the car and stopped to watch the construction going on outside (and spotting some garbage trucks that he insisted were there - I didn't see any!)

We had a great ride home and Ethan was in a rare chipper mood. He was watching a "Leap Frog sight words" video in the backseat. I could hear him repeating the words they were showing and saying them weirdly. He'd keep repeating them and start cracking up at himself and the way they sounded. Needless to say, the drugs were making him feel pretty good today! :) He even was nice and giggly with Callie when she came home from school!

He ate a great dinner, ate tons of snacks, and just went off to sleep easily. Hopefully we'll get a great night sleep tonight to catch up on some rest. Last night he was up screaming for hours. I don't know if it was because of some caffeine he had in the afternoon or if he was nervous about the scan. Either way, the combination of not falling asleep plus waking up to head downtown early this morning was not appreciated! He's looking forward to going back to school tomorrow, so hopefully things go smoothly and he can have a great day back.

I don't know when we'll get the results of the scan. I most likely won't know any details until Wednesday or maybe Thursday at the cath. Once I find out some info I will let you all know. Please keep us in your prayers that we stay healthy this week for the cath. In the hospital cafeteria, a woman sat down right next to Ethan and started coughing all over herself. It was disgusting. I packed up as quickly as possible and left, so hopefully no damage was done! You would think that if you're sick and you see a little kid in a wheelchair sitting as far away from people as possible, you wouldn't go sit right next to him and start coughing up a lung! *sigh* Anyway, thanks for all the prayers and please keep them coming. Thursday is going to be huge, so we appreciate all we can get!

The plan, fall fun, and school reports!

Things have gotten pretty busy here lately - and will get even busier these next two weeks!

First, let's start with Ethan's parent-teacher conference. I went in a week and a half ago for his conference. It went better than expected at least! She said Ethan is behaving wonderfully in class. He is one of the best behaved kids there actually! This is mainly because he won't talk to anyone so he never gets in trouble for goofing around with the other kids and stuff. He just goes into the classroom, puts his things away, and sits down to wait for class to start. He still refuses to socialize except for one incident where he got into a verbal argument with a girl over where to put a toy away. The teacher was shocked! She said she was actually thinking "yay, go Ethan!" because he was standing up for himself with the another kid! Granted, I would much rather his only socialization is NOT in an argument, but I guess it's better than nothing. :/

Academically he's still struggling in some areas. He is doing well with his letter, letter sounds, and number recognition, but struggles with actually building words and putting numbers in correct order. His interventional specialist comes in and works with him to help on these skills. Hopefully we can see more improvement because of this. One thing she brought up that he is top of the class at is his artwork for journal time. Every day they are given a prompt to draw a picture about. She is so impressed with his drawings and uses them as her example to the class each day. She claims she holds up his journal and says "see class, this is what I want everyone's journals to look like!" :) YAY! She took his off the shelf and showed me some of his work. One example was the prompt about a healthy snack. Most kids drew a couple random snacks. Ethan drew a complete fruit bowl with bananas, grapes, oranges, apples, etc! And it actually was really good! Another was about trick or treating. He drew a paper bag with various candy pieces falling into it. There was so much detail in his drawings and he does a great job with it. You can tell he loves that part of the school day! He still chooses to draw by himself instead of play with the kids at recess, but he claims he's happy with that. I'm not going to push him to play, but hopefully during some colder days he will do something with the other kids during "inside recess".

Callie:
Callie thankfully is doing great in school again. This week she's going to turn in her science fair project, so thankfully that will be over and done with. I'm so relieved I don't have to worry about her academically! She loves school - especially the socialization part! It's kind of crazy how different these two kids are! :) She's also keeping busy with her girl scouts, basketball tryouts next weekend, and goalie soccer training. She loves it and is having fun, so that's a big relief. And hopefully it will really help her excel in goalie for spring season!

5th grade pictures!

She went to her orthodontist evaluation a week ago. They said the best plan is to wait until the rest of her permanent teeth come in before getting braces - she still has a lot of baby teeth. They asked if the way her teeth stick out bother her. If they did, we can do a round of braces now and then another round when her teeth come in. She said no, she was happy with her smile. :) I love her self-confidence! So we decided to wait. If she changes her mind later we can always return and see about doing something then.

She also saw her rheumatologist again. The appointment went well. Her ability to bend over still has not improved even after these months of stretching and Naproxen. The doctor checked her out and said there doesn't seem to be any joint swelling and her joint pain has gone away these past couple of months. :) We are going to stop taking the Naproxen to see if the pain returns or any swelling happens. Hopefully we can just stay off the pills because obviously we'd rather her not have to take it! She also needs to see a new orthopedist. Her scoliosis is still a big concern for the doctor, so she wants us to go see someone to  make sure there's nothing that needs to be done to improve it. It's not apparent at all when she's standing normally, but when she bends over it's very obvious. Hopefully the orthopedist can shed a little light into the situation and figure out something to help her.


We were able to spend a little bit of time outside enjoying the leaves this fall. We took a few pictures and played in the leaves. We gathered a huge pile together for the kids and dogs to jump in. They had a blast!

We also took a couple pictures around the backyard.

Ethan:
Medically...we finally have the plan! Dr. Golden called yesterday morning and said everything is scheduled for the CT scan on Monday morning at the Clinic. He will be sedated for it. Due to this he had to have a physical done within the past 30 days. Well, his last physical was 2 months ago so we had to get in to see someone to do it. His pediatrician couldn't see him on such short notice, so Dr. G said we could come down and see him instead. I picked up the kids from school a bit early and headed downtown for the checkup. Dr. G said his lungs sound great - YAY - so the new inhalers seem to be working well! He was very concerned about his face though. Ethan has a major problem with dry lips. Once they get dry he constantly licks them and makes them MUCH worse. He has been doing this for the past two weeks (even with me consistently putting creams and ointments on). Dr. G was concerned it was getting infected and didn't want to take any chances of having anesthesia cancel the scan on Monday. He called in a steroid cream for his face as well as an antibiotic cream just to make sure. Hopefully we can get this cleared up for Monday!

He also has a very loose tooth that he is too scared to let us pull out. If it's still there on Monday, we will be removing that once he's asleep! :) They're going to do the scan on Monday, and once he's awake and feeling good we can go home. Then Thursday morning we will return for his cath. This is most likely going to be his biggest cath yet (if they stick with the current plan), so please keep us in your prayers for this week. Going under anesthesia twice in a week will be tough for him as well, so that's another concern. I will keep you all updated on how Monday goes. This scan will tell us for sure what the cath plan will be and how things are looking. Thanks for all the prayers and support - I'll post again on Monday about his scan!

Halloween

Earlier this week, we were able to carve pumpkins! We had a lot of fun and the kids really got into it this year. I can't believe it, but they even scooped out their own pumpkins! They dug right in and didn't worry about how gross it was at all! :)

Callie, John, and I used templates to make our pumpkins. But Ethan drew a "pumpkin face" on his and cut it out! He was doing well but struggling a bit with the cutting, so we insisted on helping cut. He was NOT happy about that, so he changed his pumpkin to a "sad pumpkin" to match his mood. I love that he added in tears! LOL! He was so proud of it and I'm so happy he enjoyed it so much this year. We had a little contest on Facebook to see who made the best pumpkin. Ethan insisted that his would be the winner since it was so good. "Everybody is going to love my sad pumpkin!" according to him! :)

Callie made a cat and did it completely on her own! She was so happy with it too and had a great time!

John thought for sure his Jack Skellington face would win, but my Velcome bat was the best! :D

Halloween night we braved the wind and rain to trick or treat. The kids had a lot of fun and were so excited to head out! This was Callie's first year going as something scary instead of girly. *sob* John and Callie were thrilled about that though!

Ethan was very excited about being a police man this year. He had been planning for a long time prior to Halloween. Here's a picture he drew a few weeks ago to let me know what he wanted to be. ;)
 

Fiona even dressed up this year! I can't believe it, but she kept her costume on with no problem the whole time! She was a big baby and made us carry her half the time, but she enjoyed herself too. :) And I think she was the cutest little bumblebee or "bumblefee" ever. Some houses even gave her treats and lots of rubbings!

After we finished the first cul-de-sac, Ethan was tired and wanted to be done for the night. He outgrew his stroller and our wagon was filled with leaves and rain, so he had to walk. Thankfully he had gotten a good stash of candy by that point to go through. Callie wasn't finished yet at all, so she and John went to finish up the neighborhood! They really hauled in a TON of candy since not many kids were out in the rain!

Hope you all had a wonderful and safe Halloween too!

And to top it off, today Ethan brought home the "Shining Star" prize from school! I was so excited! They give this to a kid who is being good in school. :) Did not really expect to see this coming home from him!

MEDICAL:
Still no new news for Ethan. Our doctors emailed again and said they're working on making sure everything is set up the way they need it for the CT scan. We'll find out soon when that will happen. They're also already reconsidering what to do with the conduit. Maybe we'll just try to balloon it instead of placing the other covered stent. We can use the other covered stent if there is an issue or problem when ballooning it. I guess we'll just wait and see what the CT scan shows to give us some idea of the best plan for the cath. I'll let you know once I hear something.