I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Thursday, March 5, 2015

Why a g-tube for Orson?


Orson is our third child in birth order and our 2nd born with Cystic Fibrosis. He was literally born cheerful. There is something about him that draws people to him. Some sort of magical kindness & joy powers he was given. Knowing he had CF before he was born we were able to start with his enzymes right away and had more knowledge about how to help him with his CPT (chest percussion therapy) and meds because of our experience with our daughter, his older sister with CF.

We assumed he would be similar in his journey with CF as his sister and that his body would react in ways that hers did. Of course, just like any parent who makes assumptions about how a child would grow and change based on their previous siblings we were wrong. Our daughter was literally a miracle for size in regards to her CF. Her growth chart soared above the 90th percentile all the way until she was about 4 years old. We were told by many on our clinic team that she was an obvious exception to the typical CF child in terms of growth. We had this first daughter who loved milk, cheese, and peanut butter and then our next child with CF comes along and would choose a bowl of tomatoes and ice water over any of those foods our daughter got her size from.

Totally awesome of course that he is such a healthy eater naturally but not so good for beefing our boy up to increase his healthy lung function. At 7 months old he stopped wanting to drink any milk. It could have been for any of the reasons that a baby starts to refuse milk. A sore throat, ear ache, upset tummy, or maybe he was sick and tired or having salty applesauce and enzymes put into his mouth before he could eat anything. But try and try and try as I may I could not get my kid to eat. He remained totally happy though and cheerful. My pediatrician put him on the scale and saw he had lost a significant amount of weight. He told me to call the clinic right away and get seen by our pulmonologist. Our team at PCH got us in and took some blood tests revealing that his sodium level was so low that he is in real and immediate danger of having a serious physical failure such as a heart attack.

Throughout the first 24 hours of his hospital stay as he flirted and smiled with all his nurses, x-ray techs, and doctors. They all kept asking me “is he always this happy?” Yes actually he is. He is a very fun kid to be around. The first night in the hospital I was standing with our shift nurse and the tech who was trying to get an IV into my sons dehydrated body. The tech was having a difficult time getting the IV in because of his dehydration and it took quite a few tries to get it in. The tech looked at me and said, “How could you let this happen?” That question felt like a gun shot. She didn’t really I mean to upset me as much as she did I am sure. But it felt like she was confirming what I was absolutely already feeling. This is all my fault, I am his mother and I couldn’t feed him.

As he became hydrated his body revealed that his lungs had developed a nasty virus. We stayed for a week clearing everything up. It happened to be the week of our middle sons 3rd birthday so it was even more heartbreaking to be away from home in the hospital.

This experience made us very aware that our sons natural nutritional tendencies would be very different than his sisters. So here we are 3 years later and we have come to the point that our team at PCH has recommended that our boy get a G-tube (a gastrostomy tube is a tube inserted through the abdomen that delivers nutrition directly to the stomach). That way he can get a bolus feeding at night to boost his standard calorie intake from his day. The surgery will happen sometime in the next few weeks.

Looking at him he looks about the same as other children his age size wise, but CF has a different growth chart and growth goals than a non-CF person because their weight has a direct correlation with long term lung function. This is something he could grow out of needing. Other CF families we know have kids that only needed the tube for a few years. We are really hoping that it all works for our son and gets him where he should be!
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