Henry has always had issues with his Gtube. Before we left the hospital, he was vomiting and retching. His nissen fundiplication was failing before we got him home.
He cried for nearly 18months after the surgery, as we learned how much formula he could tolerate. He was on a pump, for 18 months, with a constant feed, 24hrs of small amounts of formula dripping into his gtube, because he could not handle more than a few oz an hour.
Eventually, we were about to get him off of the pump during the day, with small 1oz feeds every hour. When we were able to feed him 2 oz every 2 hours, we stopped using the pump all together.
We were always looking for ways to improve his nutrition, but were restricted by the available formulas. When I read about blenderized diets, I was thrilled! We had been blending food for him, before the gtube placement. He had been taking blends through his bottle.
We started small, with steamed veggies and oatmeal in a tiny food processor. I would have to push it through a sieve before pushing it through the gtube. His life changed. He started gaining weight. He stopped crying. That was last March 2012.
Last July, I got a job. It no longer took two people to care for Henry.
In Obtober 2012, he got really sick. He was diagnosed with a strep infection in his gtube. Since then, he has been plagued with multiple bacteria overgrowth. On May 17, 2013 the labs came back with the results of the latest infection. Two types of staph, and another bacteria normal to the inside of his stomach. Staph is easily treated, but our Henry, is allergic to the two most common options. That leaves us with choices that would change Henry's quality of life, and damage his dignity.
We opted for no treatment.
Last week, we met Henry's Hospice team.
Casey is Henry's nurse. He's a couple of years younger than me, a redhead, and looks like he could be my brother. He has never had a peds case before, but landed Henry's case, because he's the strongest team member. He said he read Henry's files, and was moved to tears. He has a four year old son, himself and said he couldn't help but see his face in Henry's.
We also met Trevecca the social worker for our case. She offered counseling for our family and for the kids. She has been doing this for about 12 years. When she saw that Henry had a little brother, she ordered some books, so that we will be able to help him through this process too.
And we met Suzette, when she went to the pharmacy and brought meds for Henry on a Friday night, so that we would have what we needed over the weekend. She also gave Noah some tips to help soothe his sinus infection.
We don't know how long Henry will be sick. We don't know how the staph will attack his body. Right now, he is happy. He's happier than he's been in a while. He smiles and 'dances' and responds to everyone's voice. He sleeps through the night and likes to cuddle.
Our friends and family have asked what we need. Our friends and family ask us what they can do. For now, there is nothing we want more than time.
Here is a list of how to help.