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!