Throwback Post #3: 191 Days (December 5th, 2022-June 18th, 2023)

This is just a snapshot of some different aspects of our life during Roman's 191 days with an open chest wound last year.

Where it all started...this was before the first minor day surgery to remove the broken sternal wires.

Waiting for Daddy to pick us up at the front of the hospital afterwards.

Unfortunately, four days later, on December 9th, he had a half a grapefruit sized swelling on his chest, and he had to have an emergency surgery to drain, clean it out, and place a wound vac on.  That began a longer journey than anyone expected to getting a closed chest on June 18th.

During these 191 days, he was hospitalized 5 different times and had 5 more surgeries in addition to the first two mentioned above.  There were two more serious infections, one PICC line, and countless ER visits, wound vac changes, wound checks, bedside debridements, IV's, MRI's, and tears shed.  It was rough for sure.  I had to have a bag packed every time I drove to get a wound check in case they admitted us which was two or three times a week for the entire six months.

The first wound vac (in my maroon fanny pack to keep him from pushing buttons) that he got was small enough to be drug around behind him and not pull on the suction.  However, it also had a super short battery life and had to be plugged in a lot more than just at naps and bedtimes.

Lots of swing time was one way we kept him happy and busy.

Learning to use his Honey Bear straw cup.  This was his first time holding it on his own too.

I was stuffing his clothes with a blanket for a long time because I thought it would make him more comfortable, but, as his CT surgeon joked, it was more for me than for him.

Defying all odds and learning to stand even with a wound vac!

We got a 5 foot by 5 foot playpen for the living room when we realized the wound vac was here to stay for a good while.  He needed a place to be able to play and not go further than his tube, AKA "leash," would allow.  It turned out to be a great investment, and, now a year later, even without a wound vac restricting him he is still happy to play in it.  Sometimes I'd say he even feels safer and happier within the boundaries of this comforting familiar area.

This is how he slept with the wound vac in the black bag at the bottom "hidden" behind his stuffed animals with the cord strung through the bottom corner under the mattress that plugged him in to the wall to recharge the batteries while he slept.  The cord did get wrapped around him a couple of times, once around his neck in the middle of the night.  Thank God that he started moaning and crying out because I was sleeping right next to him and was able to unwrap it.

The great thing about this play pen is that it rests on the ground and anyone could get in with him to play if he got bored...like in this picture.  The kids were constantly hopping in and out to entertain him.  His therapists got in sometimes too.

Here's one of our creative ways that we used to give him time out of the playpen and allowed some exploration.  We tied the wound vac into the wagon.  We still had to watch carefully to make sure it didn't get stuck on anything.  If he pulled too hard on it, it could loose suction and that would mean another 30 minute drive to the hospital ER for the doctors to replace it.  We did have to make that trip about a half a dozen times over the 191 days that he had the open wound.  One time it lost suction when we were out of town, and we made the decision that we'd seen it don enough times that Brian and I could do it ourselves.  We did it!

Fell asleep to "Sweet Child of Mine" while awaiting anesthesia.

Practicing eating food at the hospital which for the most part was majorly put on the back burner during this nightmare.

Brian and I took turns staying overnight with him when he was in the hospital.

 But on June 18th, his wound was officially closed and he took his first unassisted steps!  Praise God!  No one knows why this happened, and we just have o trust in Jesus on that one.  But, oh, how grateful we are that it is finally done.  As I write this in January of 2024, he does have a couple sutures trying to come out around his scar, but so far none are inflamed or any cause for concern.  Although we will continue to pray for his health daily.  He currently is sick again; he started showing signs of illness within days of finishing his antibiotics for the strep.  Oh, this boy!