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.