Hi everyone -(I can’t believe I misspelled the title word “dodging” …. I told you, I’m tired. I just fixed it though.)
Sorry I’ve been a slacker today on the updates. I’m just drained!
Cohen had a good night after his surgery but starting about 5am he kind of took a turn. Since they fixed things up quickly, they didn’t let us know everything going on until they had him fixed up and doctor was able to meet with us.
I headed from Children’s back to Parkland today about 8am to get discharged. When I got to Parkland is when Brent called that the doctors wanted to meet with us. At that point, we had no idea why. So I had my mom get me back to Children’s…keep in mind..I’m in a wheelchair and at the time, I was still connecting to hospitals via basement. I tried to get her to run : /
When I got there we met in the family consultation room. Brent and his mom were in there along with our social worker and the hospital Chaplain. Of course, I immediately thought, oh my God, something has happened and they are going to tell us. The Chaplain introduced himself and said Cohen had been confronted with an issue but that he was stabilized. He let us know, he is often invited to the doctor/family consults to be there for support. I felt a little better at that point. The CV-ICU head doctor (who we talked to all the time) came in quickly after.
Dr.Koch let us know that Cohen had a atrial tachycardia incident. This basically means that his little heart went haywire and had gotten up to about 300 beats per minute. Luckily, since the team is so close by, they were able to start manually pumping his heart and get him stable. They told us with such a major operation his heart just needs meds and guidance in order to properly function and learn what do to. He is at risk now for this to happen again. So hopefully to prevent it, they added and increased medications.
The had the ECMO team bring in the ECMO machine. That is NOT what we want. ECMO is extracorporeal membrane oxygenation. This is a machine used for complete life support to allow the body to rest…usually after major surgery. Cohen is already medically paralyzed (medical induced coma) so it would have made things much worse to have had to go on the ECMO machine. The doctor said on the ECMO he would probably only have 3 or 4 weeks before he had to come off of it.
When we went in to see him after meeting with the doctor, the ECMO machine was in his room. This afternoon, it was across the hall from his room.
The doctor told us that the ups and downs just come with this territory. I felt like I knew that. However, it felt much harder when it actually happened so quickly. He had a successful surgery and we were on such a high. Cohen was such a trooper in the major surgery and he did so well all night. Then, his poor little heart just needed some help. It does not mean the surgery didn’t work. The surgery was still successful they just have to get his little body ready to work with his heart . We pray it all works together well. There is lots of adjusting meds and trying to ween him off of them so that they can test how other things are working.
Later in the day I was able to ask more questions. There are no timelines. They told us if this happens, that happens. They so encourage us to ask questions if we have any at all.
I needed peace and quiet after we met with the doctor and then saw Cohen briefly. Brent and I just hung out in the family consultation room. I napped for a bit because Cohen had a whole team in his room with lots of machines. We’ve been able to spend time and talk to him this this afternoon. He looks good. Well, he looks as good as he can. His color is good and I swear his hair is thicker or longer today.
They were pleased he did good all day today with the changes they added and made. We pray that continues.
I did make it back to Parkland today for a few minutes to get discharged. My OB, Dr.Santiago, has been wonderful at letting me be where I need to be and checking in on me. When she came into discharged me today she checked things with me and found out how things were with Cohen. She also got to watch his delivery slideshow. I would indicate which when she is in the slide show..but they are all kind of dressed the say. Anyways, I’ve loved having her as my OB in Dallas and I have a few follow ups in the future.
My pain is doing okay. As I mentioned, still in wheelchair. I’m just having to cover to many steps to be walking. I’m having that “burning” which I thought was on the outside of my skin but Dr.Santiago said though it may feel like that, it’s probably right under and internal. But man, it freaking hurts sometimes! Only a few times a day really bad..when I stand or move funny. My incision is healing good though.
The nurses and staff at Parkland were all super nice and helpful.
Back to the slideshow, thank you all for the sweet comments I do watch it ALL the time.
I’m going to post a few pictures from Tuesday and Wednesday. Tuesday I came to see Cohen at Children’s for the first time since I got to hold him when he was on his way to Children’s. When I got to Children’s they did already have him intubated but he could still open his eyes some Wednesday we spent time with him before he went into surgery. I am going to post a picture of him from last night after his surgery. He does have wires and cords all over him. It is sad. In case you don’t want to see the chest opening…..you really can’t all too well because the picture was taken with an iphone.
I will indicate which pictures are from Tuesday and which are from Wednesday.
Here we are on our way to Children’s. For me it was the first time to see him since the day before right after he was born….
Here is his room. We hadn’t really moved our things into the back of it when this was taken. There is a couch, chair, armoire. We are going to get Cohen some cute stuff but kinda want to wait until things calm down. Notice, whoever (probably a nurse?) made the cute sign for the bed, reads the blog I’ve had lots of sweet people tell me they are readers here!
On Tuesday (an some of Wednesday) we had to “scrub” in somewhat because they were still waiting on some specific tests results to come in.
He was having a sonogram done here…..
he likes my finger
Brent taking me back on Tuesday afternoon….
The next set of pictures are from Wednesday…
Brent showed up to my hospital room with a sweet little stuffy for Cohen on his surgery day.
Talking to our social worker….
This was before he went back for surgery. For the surgery updates, I did them in the previous post.
we named the stuffed pup..BT for the BT shunt Cohen was having put in during surgery.
waiting for the hourly phone calls during the surgery. I think it ended up taking about 5 hours.
Here is he after surgery He isn’t feeling any pain and he can till hear us. He is a medically induced coma so his body can heal.
All the pics (minus the iphone ones) were taken by Brent’s mom. I think she took a few today I’ll post soon.
I honestly wish I was better at describing all going on with Cohen medically and using all the terms, but I’m just not right now. Maybe (hopefully) I will be in the future. However, right now when a doctor starts talking to you with phrases like “he dodged a bullet” and “he isn’t out of the woods” you kind of just can’t think about anything else but your baby. He almost died. He is critical. He may be for critical for a while. It sucks, it really does. The doctor told us we need to take things about a half a day at a time because his situation can change so quickly.
Once again, thank you all for your thoughts and prayers. We greatly appreciate them!
I’m not big on talking on the phone at all right now. Sorry, and no offense to anyone. I am doing some texting though. I am reading and saving all the emails I’m getting. Someday, I will maybe have some time to reply for those..but in the meantime, thank you all for those. I will get back to twitter and facebook updates hopefully tomorrow. Praying it is a good night and day.