Two years. TWO YEARS for what what supposed to be “temporary” and “Likely about 3 weeks.”
I had no clue how much my life would change on October 13, 2011. The vastness of the implications of that day are surreal.
Here’s a quick synopsis of the events leading up to that day.
Manny was born and had troubles eating from birth. It got severe by 8 months and he was placed for adoption and hospitalized. It was then they did a swallow study and gave him a Gtube and a Nissen Fundoplication. The Gtube is because he was aspirating the formula (means some was going down his lungs and not his stomach.) The Nissen Fundoplication (also known as a “Nissen” or a “Fundo”) was because he was having some severe retching and that was ending up in his throat and also into his lungs from there. Aspiration pneumonia is not pretty, especially for a child with weak lungs.
We picked Manny up from the hospital the day he was being discharged from these procedures. It happened to be the day he turned 9 months old.
From the very beginning, he was having troubles with what I called “retching”. The episodes were scary. He was losing his breath, he’d gag and turn bright red, eyes would water and he looked scared. They would last for hours sometimes. And he would often crash after for hours. I got numerous of these on video. Doctors didn’t seem concerned or perhaps they just didn’t know what to do. But I tucked this away in my heart.
Over time, the episodes became more severe and pronounced. A test was done and showed his stomach was not emptying at all. 50% of stomach contents should leave the stomach in this hour study and less than 1% left. We thought we had the solution. We did a GJ tube. So rather than food going directly into his stomach, it would go into the bowel.
This never worked. There were problems from the start. The pressure in the bowel would send food and even the tube in the wrong direction. His episodes of retching became worse.
At one point, it was so dangerous, I thought I’d end up killing him just by feeding him. Local doctors seemed stumped so we were referred to a different city for treatment. They initially thought is was a malfunctioning jtube. Then they thought maybe I was making the whole thing up or even worse, making him sick.
I was told numerous times, “Anatomically, that’s not possible.” They were saying I was lying. I was about to be discharged. Then the head of the GI department was consulted and something in my story resonated with him. He took the case. He immediately dismissed the rest of the team that had not listened to me.
We started fresh. I told him EXACTLY what Manny would. I showed records. I showed videos. I had them try the experiments themselves. They saw what I was talking about. They didn’t understand it but they saw it.
He was very, very ill whenever fed. We tried lots of different things ... speed, amount, type of formula, etc. Everything made him do these episodes. Some just did it worse than others.
The only thing that didn’t cause troubles was pedialyte. Problem is ... it’s only about 100 calories a day at the rate he could tolerate. He wasn’t getting dehydrated this way but he was getting no nutrition and was losing weight fast.
Eventually it became clear ... something had to be done. Meanwhile I was researching and discovered that Total Parenteral Nutrition or TPN would have to be started.
I remember the day I felt like this was inevitable. It was a cloudy, gloomy day. I sat in our hospital room and just cried. It was a very somber day.
Why? Because TPN is very difficult on the body. While some people can live a lifetime on it with few to no complications, it’s not always that easy. I knew that this decision might be one that was shortening his life. It was a heavy decision.
When I asked if we were to TPN yet, she assured me we weren’t there yet and they would keep trying. But I knew it was just a matter of time.
Sure enough, on October 13, 2011, the doctors determined he had lost too much weight and was too weak to continue on with the experimental feeding. We would have to start TPN “Temporarily.” As the head doctor said, “To get him out of nutritional debt. Then we can start again.”
What we all looked like back then.
Well ... two years later and we are still on TPN. In fact, we have yet to have anyone even give a possible solution to weaning him off.
I still have hope this isn’t lifetime, but it sure looks like it will be without divine intervention. (Thankfully I believe in that though!)
I call TPN the biggest miracle that I hate.
It’s certainly a double edged sword.
On the one hand, it’s very hard on his body. Within 3 months of being on it, he lost his gallbladder and he barely survived the event. His kidneys are now damaged. His liver is starting to fail. And that’s not to even talk about all the crazy Vascular Access emergencies like broken lines, sepsis, blocked lines, etc. Those events have been the most life altering events of all!
But at the same time, TPN has given us freedom from the heartwrenching episodes of retching. He’s stopped looking at me with those eyes and begging me to stop choking him. His heart rate no longer goes close to 300. He never turns blue from lack of oxygen. He no longer has hour long sleeps where he has just “passed out”. He’s stopped “drowning”. (The formula would go into his lungs and he couldn’t breathe.)
I had a very frank discussion with our new GI. I’d rather him die of liver failure than drowning. And while I say that very bluntly and very matter of fact, it was a decision that I came to after much prayer and many tears.
So as I reflect back on these past two years, I cannot believe the incredible ups and downs we’ve endured. They have been the 2 hardest years of my life ... BY FAR.
And yet, I still have Manny.
Happy Anniversary buddy. I love you with all my heart. I’ll never stop fighting for you.