Had a Bad Day

Chest draining tubes, an IV in his main artery in his groin, how bruised and swollen his body was, (more than double his normal size from all the IV fluids.) To me that photo is a strong reminder that no matter how much we do, our lives are in God’s hands. Within the next year my 19 year old niece Maddy drowned, and my best friend Lonni lost her 9 month old daughter Sarah to EB. If I try to make sense of it all, it doesn’t. Ben lived, he has some permanent damage form this episode but I believe he needed to be here longer- (I am sure it’s so I can learn more as a person because I think he is already perfect.)


I found this picture and I don’t remember seeing it before, it was taken right before we went to the hospital that day. I just had a really good cry because looking at this photo I see now how sick Ben was at that moment, and how close he came to not making it back home with us. The pictures below are graphic, but they show how serious this was.

The day that Jonathan dropped me off at the ER and went back home to watch our 3 older kids was life changing. I thought we had already been through the really hard stuff. Like walking out of the hospital every night for two months leaving my newborn baby (and it felt like my heart) there without me, like spending days at the hospital and having to rely on others kindness to watch my other children- and feeling so torn between the two! Mourning the loss of mothering my baby- I couldn’t sleep with him at night, couldn’t nurse him, and as relatively minor as it may seem, one of the most heartbreaking things to me was not being able to hear his little baby sounds (the trach is placed below the vocal cords so no air is forced up and through them.) And those are just the emotional things. The physical side of it all was crazy too. Ben could not be out of my sight. We couldn’t hear him cry so I had to constantly be aware of his every need. Constant suctioning to keep his airway clear, and breathing treatments through out the day to keep his lungs from getting too dry.

Ben could not have been a sweeter patient. He was so loved and doted on from the moment he arrived. I remember when he was a few months old I was laminating to a sister over the phone about some problem with Ben and my son Scott who was 7 at the time said “What do you mean? There’s no problem with Ben he’s great!”

But that day at the ER made every thing we had been through seem like a walk in the park. It started with one nurse and quickly grew to 6 surrounding him. They realized he was dehydrated and they could not get an IV in. They moved him to the larger ER and the full size bed with his tiny body was completely surrounded by people trying to save him. I was in a bit of shock- I couldn’t let myself admit it could be so serious but when one of the nurses told me to squeeze in and “hold his hand” my heart just sank- since when do they want me in the way??? I just called his name over and over trying to give him a reason to want to stay with me. He coded the first time when they pressed a hollow needle straight into his shin bone- no anesthesia just desperation to get fluids in. They placed 7 of those before they were able to stabilize him. (After we counted over 100 pricks all over his body where they had tried to get IV’s in.) During this a nurse called Jonathan and all she told him was “you need to come your son is not doing well.” So he drove to the hospital not knowing if Ben was alive or dead. (To this day he prefers being at the hospital during any procedures because he does not want to ever get a call like that again.)

Over the next 12 hours Ben coded 3 more times. I remember standing at the edge of his room and watching the head doctor work. He never touched Ben, but stood moving his hands like an orchestra conductor directing every single thing that was done to save Ben. At one point they did an emergency surgery to check Ben’s internal organs and we got the call to RUN to the OR because Ben had coded again. He was stabilized when we got there but it was not the last code. We kept asking “is he stable NOW?” and the doctor kept saying “your son is very sick.” It wasn’t until the next day when the nurses who had worked on Ben kept coming in to look at him in amazement that we realized they had not expected him to live. As I write this and listen to Ben’s mist running while he sleeps next to me I am still so thankful for the miracle that happened that day.

Nothing I can put in writing does justice to the way I feel about it.

We were so glad to see him open his eyes!

Miracle baby a few days later…..

At that point we weren’t sure what we could expect for Ben’s future, he had seizures and brain bleeds so the doctors said we would just wait and see. We know believe Ben’s mental delays are a result of this “bad day” but we are so grateful to have this sweet little monkey still with us!

Jonathan is not much of a journal writer but he has been good about keeping track of the kids births and I just found THIS DOCUMENT on the computer where he wrote to all our families his viewpoint of what happened. He is really good at the details!