Busy busy!

School:
I can't believe it has been so long since my last post! Things have been busy here!
Ethan is doing well. He started back to school half days last week and full days this week. So far he is handling it well. He is physically good. His school has been wonderful about making any accommodation he needs in order to be able to be back at school. He has a classmate carrying his bookbag for him since he isn't allowed to carry it for another week. He also goes to the intervention room for math and reading class (smaller class size and extra help). He likes his teachers thankfully and I really hope that he will do well this year! He has been still having outbursts in class, but they say it is nothing they cannot move past so far. I really hope things improve and he can do much better this year! He still is five days of being absent and not made up for the year, so thankfully we still have his homebound teacher over after school. They are able to work on homework together and go over anything he doesn't understand. I have loved it since he works so much better for her than for me! :)

First day of 3rd grade!

After school!

Psychology:
We were finally able to get back to the psychologist last week. We were able to discuss all the major emotional issues he has been having, the lack of independence from me, the lack of sleep, as well as our goals of more self-control especially in school. Emotionally he has been incredibly exhausting, so hopefully we can get him doing much better soon. He definitely has improved since his hospitalizations, but we have a LONG way to go still.

Cardiology:
We went to cardiology a few weeks ago. The appointment went well and Ethan was cooperative! He interacted with Dr. Z and chatted with the nurses a little bit. I was definitely pleased to see he didn't just shut down immediately again! His lungs sounded a little less wet thankfully, but we are going to continue on his Lasix to try and clear them up completely. Overall he sounded really good and we just need to give him more time to recover. We discussed his esophageal and GI issues. GI wants to do a scope soon to biopsy and check for EOS (eosinophilic esophagitis) which is an allergic/immune condition that causes a lot of the symptoms he is having. Cardio also brought up the idea of doing another cath soon to check his lung pressures. That is the only true way to find out how his lungs are doing, heart pressures are, and to see if anything needs to be adjusted with the valve between his ventricles. John and I are very much opposed to doing any cath for a LONG time since we know he will just revert back to square one emotionally/mentally. He cannot handle another hospital procedure anytime in the near future. Hopefully we can get things figured out to where we don't have to do anything invasive for a while. We return at the end of the month for another check.

His pulseox has been amazing - low to mid 90s! He has not had any big issues with his heart rate since tripling his Nadolol dose. His electrophysiologist said his Holter monitor showed a lot of irregularities, but there wasn't anything that was SO concerning it would require intervention immediately. He wants to do another Holter soon (maybe next cardio appt) to recheck his rhythm after more time with the updated med doses and more time for healing post-op. Hopefully things will show that they are improving, but if not we will have to consider what other options to look at (most likely an ablation). We are still trying to get stabilized with his INR. We are now down to once a week blood tests instead of twice a week - YAY! Once he is stable and in range we can start spreading it out a little bit more, so hopefully that will be pretty soon!

Eating is still a huge issue. He is not eating much food at all. Some days are better than others, but at most he will eat about one very small meal a day (on a good day). He is supposed to drink Pediasure three times a day, but it is hit or miss whether he will cooperate with it. Some days he drinks it perfectly, and other days (like yesterday and today) he gags relentlessly and refuses to drink. I hope he drinks the Pediasure his school nurse makes for him today since he refused this morning!

Pediatrician:
Yesterday Ethan had his yearly physical. It went well and both he and Callie were able to get flu shots. Ethan is down to 70 pounds (pre-surgery he was almost 76). He grew a few inches this past year and our doctor is curious to see how much he is going to grow now that his oxygen levels are so completely different! She updated his script for physical therapy, but definitely wants us to wait for cardiac clearance before starting with that. His left lower lobe sounded worse in her opinion and he had a huge coughing/choking fit last night as he was trying to sleep. Hopefully his lung clears up soon without worsening again!

He discovered and loves the Geronimo Stilton books :)

The kids had a day off of school yesterday, so after Ethan's appointment we were able to go apple picking! The weather was beautiful and we stocked up on a lot of apples! :)

 

After apple picking and some lunch (which of course Ethan didn't eat), we headed to Callie's appointment. She broke her ankle in the spring and has been in a brace/boot all summer that was switched to a cast at the start of school. Last week during her cast exchange the tech cleaned her foot with something before putting on the new cast. She complained of itching over the weekend, but I assumed it was just the normal "my foot itches under my cast" kind of thing. Her doctor wasn't available over the weekend anyway, so I didn't think too much about it. Then Monday and Tuesday she complained it was a lot worse and burning feeling now. I called the doctor on Tuesday and we were able to get in for the Wednesday appointment to exchange the cast again. The cast tech removed the cast and we were shocked to see that her foot was completely raw! Not what we expected!! We were sent over to see our doctor at a different location to try and figure out what to do. Apparently she had an allergic reaction to something (most likely whatever the cast tech cleaned her foot with) and it just burned through her foot over the week. She now has the rest of the week off of school since her doc wants her to rest her foot, she is in no cast to protect the broken foot now, and to hopefully let her wounds start to heal to alleviate her pain. She is on a lot of meds (steroids, antibiotics, painkillers and anti-inflammatories) so hopefully she can start improving quickly. We also have a whole wound care regimen to follow. Poor girl.

Next Monday Callie is supposed to have a recheck with her doctor to check on the wound healing. Hopefully it is after school, but I am waiting on the call to let me know exactly what time it will be. She might miss more class on Monday depending on their schedule. Then on Tuesday she is missing the entire school day since she is getting her upper braces put on in the morning (lower braces were put on last month), and in the afternoon we have her surgical consult for her ankle. The doctors are thinking they have to surgically remove her bone fragment since the casting did not help. :(

At least after Callie's appointment we were able to use a gift card to Mitchell's ice cream (Ethan got this while he was in the hospital). He was so happy (as we all were) to go get ice cream, and they even had delicious dairy free ice cream for me! YAY! :)

Ethan resumes his counseling next week (back on our weekly schedule) and then has psychiatry downtown as well. Hopefully we can start coming up with a good plan for helping him out emotionally/mentally. I want him to restart his microcurrent therapy, but I have to discuss that with cardiology and electrophysiology before resuming that. We might need to wait until he is farther out from surgery and we are comfortable where he is rhythm-wise. I also found a therapeutic karate center near us (about 15 minutes away), so once he is cleared physically I would love for him to try that out. He enjoyed karate when he was younger, but since it was a regular center he spent more time being punished (on the pushup board) than actually doing the karate class. He was just unable to control himself, stay quiet, and pay attention. I am very excited about this center and I hope we can start in the next couple of months!

Now we are just going to focus on everyone being in a nice school routine soon and hopefully doing really well with it. We also plan to enjoy the start of the Cavs season and watching our Indians continue in the postseason! :) We are so excited to watch October baseball!

Please keep us in your prayers! Thank you all for your love and support! :)

Cardiology, etc

We had a decent week with just a few hiccups along the way.

Ethan is doing well with his schooling. He loves working with his teacher at home and seems to be doing well so far! Today he was able to go in to his school and participate in picture day. He was very excited to meet his teacher and class! He was happy to see some of his friends and his new teacher seems very nice. Hopefully Ethan will do well in his class this year!

We had a good Labor Day weekend. After we were discharged from the hospital we were able to enjoy the rest of the weekend. John and I finally made it back for an Indian's game. Then on Sunday we went out on the jet ski to watch the air show. We had a great time and it was so nice getting out to have some fun!

Unfortunately when we returned to my parents' house (for dinner and they had the kids) we found out that my Grannie was sent by helicopter to the hospital for heart issues. She had a pacemaker put in. She is doing better now and is being discharged from the hospital, but prayers for her are very much appreciated!

Yesterday we had a cardiology appointment downtown. It was a very long day. We started off the day with Ethan in a great mood, and I was very excited that the docs/nurses were finally going to see him in a good mood! Unfortunately once we went through the doors to the cardiology floor Ethan's mood changed completely and he went right back to whining and being in a terrible mood. :(

They could tell that Ethan is not feeling good. We did a chest x-ray to check on his lungs, and we found that his collapse has opened up more but now he has fluid built up on both sides! We had to restart his Lasix to try and remove this fluid. We had thought that his wonderful weight gain has been because of his tube feeding providing good nutrition as well as eating a bit more real food in addition. Apparently that is not the case. Upon weighing him this morning he has already lost 4 pounds. Now we have to make sure we remove his excess fluid without drying him out too much and messing with his electrolytes causing his heart rhythm to mess up again. It is a delicate balancing act.

 

We also took blood work to check all of his levels and his INR. Hopefully the results are good, but I have not heard yet.

The doc said there are likely a few main factors that are causing all these setbacks with his recovery. These are his lungs still being horrible, his esophagus still hasn't been addressed and could be causing issues, and he appears to be developing an infection around his incision. It started getting red two days ago. The docs called in an antibiotic prescription for him, but it still got a little worse the next day. It is still red and irritated, but so far he has not had a fever or any kind of drainage from it. We took a swab of it at the doctor's office so I hope to have the results of that soon. Hopefully the antibiotics work well and his incision improves quickly. There was talk of placing a PICC line for IV antibiotics, but we are not doing that now. Hopefully the oral ones do the trick and we don't have to resort to that!

day 1

We are still waiting for our GI, psych, and counseling appointments that will begin next week. Hopefully we get a lot of these emotional, behavioral, and GI issues addressed quickly! He still is struggling with his intake, but at least is improving each day so that is really great! Hopefully his progress will continue and we will be finished with the NG tube before too long! He definitely needs his esophagus checked out, potentially a scope and to check for possible ulcers (doc suggested he may have stress ulcers), and making sure his diaphragm is okay (it looked changed on his x-ray). He complains still of "I can't breathe" spells a lot. We don't know if it is mental or if there is some physical problem that is causing this, but it is definitely one of the top things to be addressed in the next few appointments. Also addressed was his hunchback. Ever since surgery he has been hunched over and I wanted to see when we should start addressing this before it gets to be too late. The doc thinks we should have neurology make sure there is no neurological reason for weakness. If he is cleared with that, then it will probably just be address with physical therapy.

He still unfortunately refuses to sleep well. That is a huge issue that will be discussed with psych. He is not allowing us to sleep more than very short spurts at a time before he wakes up screaming, and actually getting work done is becoming extremely difficult. Hopefully we can get this fixed quickly!

Please keep us in your prayers that Ethan starts to improve with his lung function, his eating, and his infection control. Also please pray that he starts sleeping well at night and that his pain improves. Also please pray for a couple of our heart friends who are currently in the hospital, and one is really struggling tremendously. Please pray specifically for his family as they are going through such a horrific time.

Eventful week

We had a great few days at home with Ethan making progress and starting to feel a little better each day.

Ethan started his home schooling this week! He loves his teacher and works so much better for her than he did for me! :) His new class all made cards for him and he was so happy to read them all.

Mrs. Wright and Ethan

Cards from his new classmates

Playing legos

Callie ended up with a cast and crutches for her broken ankle. Every two weeks she will have it replaced and we will see if her bone chip that broke off will reattach. If not we will need to consider surgery to repair it, but hopefully the cast will do the trick!

Friday morning Ethan woke up not feeling well. He complained of being hot yet his body felt ice cold. I took his temperature and he was 95.3 degrees. He was lethargic, nauseous and vomited up a drink he tried, and had a heart rate in the 160s. He had a neurology appointment downtown anyway, so I emailed his cardiologist to let him know we would be at the hospital and would stop by for him to check him out.

Too tired and had to rest walking from the bathroom to the living room

 

Scars are healing up well

 

Waiting in cardiology

EKG time

Neurology wasn't able to do too much because of how he was feeling. We discussed how once he is all healed up from his surgery and heart issues we will have to look into a med change for his ADHD. Right now is not the time to address it though.

We went over to cardiology and had him looked at. Unfortunately it was confirmed that he was back in SVT and would have to be admitted. We were sent over to PICU where we attempted Adenosine [sp] medication to get him out of SVT. It worked for a second but then he reverted right back to 162bpm and continued to hold steady there. Since the meds didn't fix the problem he needed to be shocked. The little PICU room was packed with docs during all of this and had all the equipment just in case things didn't go according to plan. Ethan was sedated and shocked, and thankfully his heart rate went to the mid-80s and stayed there! Seeing him get shocked is definitely not something that I ever want to experience again, but I am so grateful that it did the trick without any complications. For the rest of our hospital stay his heart rate was wonderful. We did double his Nadolol dose to hopefully keep his heart from going into SVT again.

Admitted to PICU

Shock pad on his chest and another on his back

 

 

The docs said that his heart could very easily become tachycardic again and it would not surprise them. They said "when", but I will say "if" he becomes tachycardic again we will have to add on a much stronger medication to control his rhythm. This will require a multiple day admission for monitoring. If that drug does not do the trick then we will have to look at a cardiac ablation to try and ablate the cause for the arrhythmias and everything going on with him. A pacemaker will be his final option, but they don't think it will come to that.

Ethan tolerated this stay better than the previous one, but still was definitely NOT happy to be in there. We were so relieved to be released today and able to get back home. He is tired and very sore (the cardioversion - heart shocking - made his chest even more tender than before).

Bloodwork was another huge issue while we were inpatient. He had so many sticks for labs and IV attempts, but his veins kept blowing. He got stuck over 25 times during our admission! His INR (blood thinner level) was way too high at 9! He is supposed to be 2.0-2.5. He also had diminished heart function and renal function at admission, but that was due to the heart beating so fast. A bunch of his labs (potassium, magnesium, etc) were elevated, but they all were corrected before discharge. His liver levels are elevated now, but hopefully as he heals more they will decrease. We were sent home with a Holter monitor to watch his heart for 48 hours. We will turn it in on Wednesday when we go back for our cardiology appointment.

Going home!

Holter monitor

He didn't eat while in the hospital but once we got home he requested pizza, so that is what we did. He ate multiple pieces of cheesy bread and a bite of a piece of pizza! Hopefully we can turn a corner with this food intake issue and he will start eating orally again! We still are waiting for our GI and psych appointments so that will also help with this. At home we sat by a fire for a while before going to bed. Ethan has already woken up many times. I pray that he will relax and start being able to sleep at night. I don't know how long it will take to recover from the hospitalizations (another doc mentioned the ICU psychosis), but it is exhausting so hopefully it is soon!

Finally eating!

Hanging out by the fire

Please pray for healing and that Ethan's heart stays in sinus rhythm and not too fast! Please pray that we get some sleep - he needs it as much as we do! Also please pray for his heart buddies. For some reason everyone seemed to be sick this weekend! Micah and Kolsen are now admitted downtown as well. Please pray for healing for these boys (and a few others heart kids who I didn't mention) and for rest!

Hopefully the rest of the weekend goes much smoother and we can enjoy the holiday!

Life at home

We were discharged from the hospital on Friday!

Grandma and Ethan in the playroom

Finally going home!

The first couple days were a little rough at home with a lot of moaning and just sitting around not moving. However it was better than he was in the hospital, so that was a huge relief! Sunday and today Ethan showed a huge improvement! He asked to walk around the house and in the backyard a little. Yesterday he went to visit his grandparents where he took a wagon ride down the street and then rode his scooter down the driveway. Today he sat at the kitchen table and did some schoolwork and coloring. We also went to the grocery store - he rode in the stroller, but at least he was out and about a little. He complained he was super bored today just stuck at the house.

Trying bites of popcorn!

We are working on oral intake still. He is drinking throughout the day and we finally have him swallowing his pills again - even though he has to do it in rounds and rest in between. He still is barely eating real food - only small bites here and there. He definitely likes having the tube, but I am afraid he is going to be too reliant on it since he is afraid to eat because he gets sick so easily. Thankfully his nausea has been very well controlled since we got home, but he also is not pushing it at all. It helped tremendously that we were able to cut his feeds down from 320cc to 120cc per feed.

Breakfast

Callie started 8th grade today! Ethan wasn't able to start 3rd grade since he is just not physically ready yet. He did think it was great this morning when Callie had to leave and he was able to stay home with the new kittens! He will have a teacher come to the house starting tomorrow. He will receive a few hours a week of in home tutoring until he is ready to start integrating back to school. Ethan loves his teacher so he should be very happy with this plan. :)

Off to 8th grade!

He managed to do a couple pages in his school book

Ethan has to get bloodwork done this Wednesday to check his INR, potassium levels, and other labs. He also has a neurology appointment this Friday. He then has a cardiology appointment next Wednesday. He will do a Holter monitor to check how his arrhythmias have been doing now that he has been back on his meds and receiving adequate nutrition. Hopefully it will show that his heart rhythm has stabilized and he is doing much better! He also needs to see GI and psych, but I don't have the appointments scheduled for those yet.

He is still receiving cards and packages in the mail, so thank you to all who have been sending him things! We also want to thank everyone for all of the prayers and support we have received! We learned a special Mass was said for Ethan today, so thank you Mary and Emil! We know that many churches and people are praying hard for Ethan's recovery and we are so grateful! Please continue to pray for him. Please keep praying that his pain eases, he is able to tolerate food, and that he starts to sleep at night! Hospital life has completely messed up his sleep schedule and he wakes constantly throughout the night. I will update again soon with how he is progressing.