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! :)
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| First day of 3rd grade! |
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| 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!
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| 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! :)
