This is a little boy who is quite sick of being sick. Aside from a trip to the pediatrician on Tuesday, and again today, he hasn’t been out of the house, or even had his shoes on, since last Thursday. He is stir crazy and grumpy and so tired of being hooked up to his feeding pump.
He isn’t normally hooked up to continuous feeds but because any illness could send him into a metabolic crisis, we are trying to head off disaster by flooding his little body with fluids and calories. All of this, combined with his new medicine, have kept him out of the hospital. For now.
We were back at the doctor’s office today for some strange symptoms, including brick dust (increased uric acid?) in his britches but urinalysis show no infection but some “rare bacteria” was flagged. The doctor said he didn’t look dehydrated at all, how could he be with 100ml of liquid dripping into his tummy day and night? We have to wait for the sample to “grow” in the lab the next 24 hours to see what is up. He has tenderness in his lower stomach area and has moments of real pain because of that. Corrigan has a very high pain threshold so if he is whimpering and holding his stomach, we make a trip to the doctor. However, we came out of today’s appointment a little frustrated and without any real answers.
We are still using the nebulizer but only with saline treatments, not steroids. Corrigan has an incredibly sensitive gag reflex and the tiniest congestion can set him off on a coughing fit that inevitably leads to vomiting, which means that all of the hard work trying to keep him hydrated and full of calories ends up on my living room floor. Or the kitchen floor. Or the stairs. Or his bed. I dread my water bill next month, the washing machine is always running and it always seems to be full of the same things…bath towels and bed linens and whatever Corrigan was wearing ten minutes ago.
The vomiting has slowed way down though, mainly (I believe) to the inhaled saline, and he is pretty good about sitting still for the treatments. He won’t put the piece in his mouth, nor will he wear a mask, but it seems to be doing well just being used in the general area of his face, so we have taken to tucking it under the strap of his feeding pump bag while he watches his favorite Sesame Street clips on YouTube. (see photo above)
We are six days into this illness and exhausted. While it is always a really good feeling to be able to stay home and treat him, rather than hospitalize him and treat him with IV therapies, it is still very stressful. I am never able to tell how much volume he loses when he vomits, nor can I possibly know how much calorie/protein was absorbed before he heaves. If we do not keep the proper balances, he will become catabolic (when the body breaks down the muscle proteins for energy) and his ammonia will rise, threatening his brain.
This is the second illness that he has had since we decided on the g-tube that I’ve second-guessed whether or not home is the best place to be, rather than the hospital, but the pediatrician says he looks really good and he isn’t showing any signs of elevated ammonia so I suppose we just keep doing what we are doing until he either gets back to good health, or something changes for the worst. Help is only ten minutes away and I am a hawk about watching him carefully on a normal day, let alone a sick one.
My instinct is that tomorrow is the day that he will turn the corner and all of his symptoms will decrease dramatically. Spring Break starts tomorrow for our area, but Corrigan has missed school this entire week, so his vacation started early. Heck of a way to begin, but looking forward to a nice break, with decent weather and maybe, just maybe we can get this kid some fresh air and exercise.
That’s all for now. Have a great weekend!