So I'm back with the continuation of our story as promised. It's been so many days now since I've left off.
I'll try to make this novel of mine a bit more concise since I'm basically exhausted. There are a few aspects of life here on the farm that are unknown to most, simply because some family business just isn't fit for public consumption.
Mostly because I like you all, and I wouldn't subject anyone I really liked to it.
Ugh, needless to say, I'm tired.
So... where to begin?
When I left off we had just been told of V's "mass" at the base of his right lung.
The doctor arrived shortly after my brief and unpleasant exchange with the nurse to let us know that he really didn't know what it was. A CT scan was ordered for confirmation.
The CT showed that this "mass" was in fact, my son's intestines and liver inside his chest. It was filling most of the right thoracic space and collapsing his lung.
Theory is, that he had a Morgagni congenital diaphragmatic hernia at birth, but the defect didn't fully open until some time after his open heart surgery. From the stress of having such severe RSV.
It needed to be repaired ASAP, but after such a severe case of RSV, anesthesia is out of the question for at least six weeks. So we brought him home on a full 2 liters of O2 and more monitors than I care to remember.
It was like walking on eggshells. I don't think I slept much that month but we made it. During presurgery testing they also found a blockage in his duodenum that would have to be opened.
The day of surgery I was nervous of course, but I thought if we made it through open heart, we could get through this. I had no idea what we were in for.
After the procedure, all 3 surgeons involved took us into a side room and layed out a number of photos. They were pictures of Vincentio's insides. The defect in his diaphragm was huge. You could look up through the hole and visualize his heart and both lungs. The surgeons all commented that they had never seen a child with such a large diaphragmatic hernia live for so long that way.
They asked for permission to use V's surgery photos for medical research.
The recovery part was truly nightmarish. His scar extended from the middle of his chest (they reopened part of the open heart scar) down to his belly button.
In the short time it took to move him from recovery down to ICU he was crying in pain. He was given more morphine, but before report was finished to the ICU staff he was in pain again. His dose was increased. During that first night, his morphine was increased two more times and fentanyl was added as well.
His chest tube to reinflate his lung was really big and obviously uncomfortable, after four days it was decided that the tube could be removed. Not long after, his O2 sats began dropping rapidly. An x-ray showed a pneumothorax had occured and there was a fair amount of air surrounding the outside of his lung. If it wasn't addressed the lung would collapse again.
There was talk of reinserting the tube but one of the docs had heard of using high flow O2 to help the body reabsorb the air. We decided to try and he was placed on 10 liters by mask. This stayed on for a total of 14 hours.
Vincentio is an avid thumbsucker, so he was NOT a happy camper during the whole thing. To avoid another chest tube, I became "super entertaining keep your mind off your thumb and keep your mask on mommy" for a really long time. It worked though, after 14 hours my man's lung was good to go.
He was finally discharged home after 11 days. The first couple days home we uneventful, then on the third I noticed what appeared to be a string in the center part of his incision. I figured it was a leftover stitch that would dissolve.
Within a couple more days the area around the stitch looked to be opening. To my absolute horror, I realized his incision was opening and we were seeing the subcutaneous layer of sutures.
Dr.P saw us pretty quick and when he used a scalpel to cut the stitch hanging out, he knicked the skin and a gush that looked something like guacamole came shooting out of the openeing. V had a pocket of infection under the skin that had caused it to open. Dr.P had to open the whole center of the incision to drain it then he packed it and sent us home.
We have to do what???
For nearly a month we had to clean this hugh hole in his belly and repack it twice a day. Finally, after several weeks it was closed enough to simply bandage over, then after six or so weeks it closed completely. To this day it's not an attractive scar, but it reminds me of just how strong he really is.
I know grown men who would be brought to their knees by that kind of pain on a daily basis.
During the repair Dr.P fixed the hole in his diaphragm, pulled his intestines out and replaced them side by side (Ladd procedure) to correct a malrotation from being in the chest for so long. He pulled his liver back into place as well and reinflated his right lung. The blockage in the duodenum couldn't be opened so a bypass was performed there.
That is what causes V's "stomach" issues to this day. He eventually required a Nissen Fundoplication for intractable vomiting and a G tube for "failure to thrive". Many heart babies have trouble putting on weight, but V's intestines were also traumatized and they don't seem to absorb nutrients as well now.
You all know the rest of tha G tube "drama" that has followed.
Since his GJ placement in July, he's gained several pounds and actually looks almost chunky for the first time in nearly four years! His skin looks good too, but due to some other factors Dr.P doesn't think his stoma site is viable anymore, so on August 24th we'll have a consult to schedule a revision.
That's Vincentio's story so far, far from over. It's not just a Down Syndrome thing. It's a Congenital Heart Disease thing, a Congenital Diaphragmatic Hernia thing, a G Tube thing, a "failure to thrive" but I'm Still A Survivor thing, and more than anything...
It's a story of how one little boys strength can bring an aching family together and make them whole again.
He's really something, so keep watching, keep reading, keep enjoying life with us. There's surely lots more exciting stuff to come!