😢 1/3 8:50 pm

Ethan is maxed out on the vent settings meaning they can’t go up on the oxygen level, pressure or anything. He is getting the highest settings.  His oxygen level is still dropping.  They are trying to coordinate a staff to do a broncoscopy in the evening, on a Sunday. Not ideal timing. 

It was pointed out to me that maybe I should reframe how I am looking at this. I am frustrated this isn’t going as expected. Maybe it goes to show how long Ethan has been sick but seeming OK externally. This kid has been fighting and pushing through this for a long time. Most people that have  a congenital defect don’t develop a completely unrelated serious heart condition on top of it. He has struggled with lung deficits for years and suffered through multiple bouts of pneumonia.

With the timeline, perspectively,  what feels like a lifetime is just a small snippet of the time he has been sick. He was just really, really good at compensating. His body is tired and all the extra stress has been taxing for him. It may just take longer.

Obviously as a parent you never want to see your child struggle. Well, with the exception of stupid things like “put your coat on.” The kid then gets cold and you don’t really care that much. If they just followed the directions they wouldn’t have struggled. This kid has seemed to struggle a lot throughout his life. I wish to see him thrive.

His “deep tissue injury” (bed sore) has gotten a little worse and likely will be addressed by the wound care team tomorrow.  

His blood pressure and oxygen have not been cooperating. He is teetering for on the pulmonary hypotension crisis. The last time he had a broncoscopy he didn’t do well with it. Now being so fragile it is frightening. There is hesitation due to safety concerns. But hopefully if they are able to do it,  it will give us some answers as to why he is struggling so hard.

A long time ago, when I was feeling stressed or frustrated I developed a coping skill of pulling my shoulders back, standing tall with my legs hip width apart. If I were walking I would fix my gaze on something and shut everything else out. For some reason it offers me comfort and strength. When I went to talk to the doctors, I did this and felt like I can take on whatever they are going to throw my way. I am scared. I am worried. I am surrounded by lots of caring people that help. We are going to get through this.

The doctors shared that ideally they would like to do the least invasive procedure. But keeping in mind Ethan’s safety. The least invasive procedure may end up being the most invasive procedure due to his compromised state.

ECMO offers the highest level of support to the heart and lungs. They are sending up someone to ultrasound his peripheral access to determine the best place to put ECMO cannulas again. It may be more tricky now that he is on dialysis. He likely might be headed in the direction of ECMO. They have held all agitating procedures on him until further notice, including his bath and turning him. No one is rocking the boat.

ECMO the second time he was on it wasn’t as bad because he had the cannulas in his legs. If it helps him heal we can’t be bellyaching about the steps backwards. We are going to focus on the forward steps and not dwell on the past. How would this be helpful in any way?

He has been stable this afternoon but very fragile this evening. The last hour and a half has been intense.  Tweaking this and changing that dose.

Lots of people in and out of the room.  They are going to do what he can safety handle and whatever will offer the most support.

They have had to call in the pulmonary on-call doctor. They are consulting with cardiology, critical care, and the ECMO team.

It seems as though it will not be a restful night. That’s ok. As long as they keep this kid going. I am glad we are taking action. I am glad we are at the number one rated hospital with all this brain power working together to figure out what Ethan is trying to tell us he needs.