We're back...

So our first full day at home yesterday was eventful. It was so wonderful to be home, but Ethan definitely kept us on our toes.

Ethan had diarrhea from morning through late afternoon. I am not sure what caused it, but my suspicion is all the laxatives over the past weeks kicking in and finally being comfortable at home to go to the bathroom easily. The diarrhea apparently messed with his electrolytes and his potassium dropped once again. He seems to be very sensitive to potassium drops as this caused his arrhythmias the previous week in ICU. His heart rate started spiking randomly to 180s-190s and then dropping back down to his baseline around 100. This went on for a few hours and his nausea worsened causing him to vomit a couple of times with his feeds.

Ethan took two baths during the day because he was really gross from not having a bath for two weeks, was covered in adhesive residue from all the tape, bandages, and monitors that he had all over him, and he said it just felt really good to be in the tub (but of course we didn't submerge his incisions).

All cleaned up after his bath :)

When he went to bed for the night his heart rate was up around 190 and not dropping. He felt horrible and asked if he was going to die. Poor baby. We told him that we had to go to the ER because obviously he needed some help getting his heart rate stable. He burst into tears saying "I'm going to miss my comfy bed." Trust me buddy, I will too. :'( We arrived at the ER around 1am and they immediately got to work. Labs were drawn, EKGs were done, an echo was performed, shock stickers were applied, and two IVs were placed (the first one blew with our first attempt at an infusion). His poor veins are just completely shot after all these pokes these past few weeks. We were on FaceTime with our electrophysiologist who determined that he was in A-Fib. His potassium had dropped and his electrolytes were messed up from the diarrhea and vomiting through the day. He also had been taken off his beta blocker (Nadolol) during his blood pressure crisis a week earlier. Having the potassium drop and no Nadolol to protect him just made it very easy to slip into another arrhythmia.

Bonding time with the bucket in the ER waiting

Definitely not feeling that great :(

In the ER we did an infusion of Digoxin and took a full dose of Nadolol. He almost immediately had his heart rate stabilize and drop to mid 80s. Thank the Lord! At this point he was completely drenched in sweat - so much so that he sweated off his leads and even his IV taping which is extremely sticky! We transferred up to PICU around 5am and settled back into our old room.

Heart rate 177 at this point

Around 6:30 surgeons rounded and he was doing well. Docs rounded again at 8:30. We discussed how Ethan definitely cannot be taken off his Digoxin or Nadolol as he is way too prone to arrhythmias. I voiced my surprise before discharge that he was taken off originally considering his past rhythm issues, and one of the doctors actually said "Well, you were right."

Since then we have been doing respiratory therapy, tube feeds, taking meds (and vomiting some back up), and trying to rest a little bit. We are both exhausted but it's almost impossible to sleep here, especially when all the different specialties keep wanting to come check in. We are hoping and praying that everything goes perfectly from here on out and we can be discharged tomorrow. If not tomorrow it should be Thursday. Ethan is already slipping back to his super whiny depressed hospital state, refusing to even attempt eating food, and doesn't seem to want to even sit up in bed much less get out of bed. We should be seeing behavioral health during this stay since he struggled so much last time and it seems he is right back in that mentality now. :( Hopefully this will be a very quick stay and he can snap out of it quickly.

Tomorrow and Thursday nights are open houses for the kids' schools. I really wanted to be out of here to go to them! I spoke with Ethan's school nurse on the phone this morning and we have to coordinate a meeting when we get home so we can discuss all that needs to be done as far as returning to school. Our original plan was for Ethan to start school on Monday with everyone else, but only attend part-time (just come for a few hours in the mornings so he doesn't get too far behind the rest of the class). Now with this setback I'm thinking that is unfortunately doubtful. We have to see what alternatives can be done - having tutoring at home or the library, sending home work for us to work on at home, etc. I really don't want him to start even farther behind everyone else on top of having to adjust to his new class after everyone else has already been acclimating to the start of the year. It is frustrating, but hopefully it will all work out well.

Thank you so much for all the prayers from my Facebook post. We are so thankful that you all are so supportive and praying for us to get over this new hurdle and get back home soon!