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!