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!

High Flow Oxygen, Just What the Doctor Ordered

As I mentioned at the end of the last post, Roman got RSV on Friday after coming home on Wednesday of the big kids' fall break.  He did okay for a couple of days, but Saturday night was pretty bad.  I slept in the rocking chair with him upright to help him breathe.  The humidifier was working overtime and we even tried to sit in the steam in the bathroom although it didn't seem to help much.  By Sunday morning I was pretty sure his wheezing and retracting was bad enough to warrant a trip to the ER.

His oxygen saturation was in the 80's.  They did an RSV test which eventually came back positive, but because my sister's baby already had a positive RSV test, and we'd been living in the same condo, they proceeded with the assumption that he had RSV.  They tried a breathing treatment with little hope that it would help.  Then the doctors ordered a high flow oxygen cannula and an IV and admitted him.

He had not had an IV put in since his heart surgery.  I was hopeful that it'd be easier now that his heart is working great, but I was wrong.  It took them 5 tries before they finally listened to me and decided it was best to wait for anesthesia (no matter how long that might take) to come and do an ultrasound guided IV.  Unfortunately it took him 2 tries.  Poor guy was wiped!  We had listened to a lot of Living on a Prayer while trying to get that IV.  The nurses thought it was awesome that he loves that song so much.

High flow oxygen was so irritating to him that he was trying to rip it out, and his Aunt Kristen came to the rescue with the perfect swaddle with snaps to keep arms in and let them out when I was at his bedside.  It also zipped from both directions to allow tubes to run into it.

The large tube in the pictures is the high flow oxygen tube.  He wasn't allowed to have bottles or anything by mouth while the oxygen was above 6.  Once he was allowed to eat, he wasn't super interested, but we were confident that this would change once the nasal cannula came out because this guy is "just so" about his eating.  It all has to be the same, feel the same, look the same.

"Let me outta here!"

Once he was feeling a little better, he would lay and play with the cord of the call button/remote if I hung it over just so.  This kept him distracted from the tubes attached to or coming out of his own body.  You can also see how the wires got tangled.  I slept lightly because I was so afraid he'd roll over a couple of times and get a tube around his neck or pull out his treasured IV.

Once he had the lower flow oxygen, the nasal cannula didn't bother him so much, and we were able to let him play more.

This was a rough experience for us all, but the most amazing thing ever did happen.  When we got up to the Peds floor, we found out that the senior doctor on the floor was a pediatric cardiologist and the very next morning his rotation ended and Roman's pediatric cardiologist came on for his shift...his ONE WEEK A YEAR shift.  We were so grateful for that because the nurses and other doctors didn't know Roman and his regular breathing pattern.  Dr. Black is the doctor that we have seen the most times, hands down.  Pre-heart surgery we were in his clinic once or twice a week.  The nurses and doctors would panic because he was belly breathing when they turned down the oxygen a bit, and Dr. Black knew that was normal for him.  We were sooooo grateful for this blessing!

"Oh, my dearest Hedgehog!  How much we've been through together!"  Roman fell in love with his music-playing, vibrating hedgehog in the CICU after his surgery.  He's slept with him every nap and night since.

Home really missed this guy!

 When he finally got released, after 4 days, his sisters and brothers were showering him with kisses, cuddles, and hugs.  I always worry that I'll be greatly missed by the kids when I am at the hospital all day ever day, only coming home to sleep every other night, but it's always Roman that is missed the most!  I wouldn't have it any other way.