We're all adjusting to this new curveball in Bean's life. Beans and I are both still grieving the loss of the most basic human instinct - to eat and to feed your child. He's coping as well as can be expected. He hasn't cheated at all, knowing that one cheat could be the straw that breaks the camels back and sends him into a severe reaction requiring use of his Epipen (shot), 911, an ambulance ride, and a lot of other scary things. And though he understands a lot better than when he was 3, he cries several times a day wanting to eat. I would have dreamed of this day a few years back when he refused all food. Now he finally wants to eat and all I can say is NO. As soon as I can I want to get him a GameBoy DSI with a couple of games (Bakugan? Pokemon? something he'll LOVE) that he can play only when Little Man and I are eating. It's so hard to feed Little Man, let alone eat myself, when I can't feed Beans.
Physically, he's doing a lot better. His skin is almost clear for the first time in weeks! His gurgly/choky throat is clear. He has no eczema on his ears. The dark circles that have lived under his eyes for a long time are GONE. The cough that bothered him all night every night is gone too. It's exceedingly clear that food and Beans do not agree with each other.
So, I tell my 9 year old who has just gotten his taste of being a normal kid and all that entails, that I know life isn't fair, but that I love him more than life itself, that I would never have been complete without him, and I'm right here with him. I hold him while he cries then he happily jumps into his computer games or an art project. I hear him sleep peacefully at night, and I know this is what he needs. Someday maybe food will be a part of his life, but in the meantime the g-tube and Neocate are literally lifesavers and we'll continue on with his normal life.
Sunday, June 13, 2010
Friday, June 11, 2010
Sad. Mad. Scared.
I haven't updated for a long time. I try to always stay focused on the positive, but that's been incredibly hard lately. Not having a reason for Little Man's increasing neurological difficulties is scary. He has days that he's very much "there" and then he has days where he can't talk straight, makes no sense and is just so out of it. That was bad enough.
Beans has a very complicated medical history including 4 months NPO when he was 3 due to aspiration. It's been a lifetime of struggles with food. From refusing to eat, to aspirating, to food allergies, dysphagia, and other issues. It has taken years and tons of work to get him to the point he's at - wanting to eat even though his diet was greatly limited by the dysphagia (difficulty swallowing) and food allergies.
In the last few weeks, his system has gone to new extremes. Within minutes of eating ANY food he breaks out in massive hives, his throat gets gurgly and he's admitted to pain/weird feelings in his throat and chest. These are not avoidable - he has reacted to things like watermelon, chicken, banana, a chocolate rice bar, even blue slushie from Sonic. His CMS nurse had us get Epipens to keep with him at all times. Epipens are injections of epinephrine to use if he goes into respiratory distress from an allergic reaction.
I've been trying to get ahold if his GI for a few days and finally heard back from him today. It's not good news. Beans is not allowed ANY food whatsoever. None. He may have water and his special elemental (amino acid) formula thru his g-tube. He sees the GI at the end of July and we'll discuss things more then. The reactions are too severe to risk feeding him.
NPO is bad enough before surgery. It is HELL for a 9 year old boy who has recently discovered a love of eating that most of us are born with. I know we have to do it for his safety. We live 45 minutes from the nearest hospital and if his throat swelled shut, even with the Epipens, it would be a really critical situation. I know all that.
But I also know that Beans loves to eat. I know how horrible NPO was when he had to do it before. I know how aware he is of being "normal." I know how much he missed out on this past year with his limited diet, and now I have to take away all of that. I will do it, I have to do it. But my heart is broken.
Beans has a very complicated medical history including 4 months NPO when he was 3 due to aspiration. It's been a lifetime of struggles with food. From refusing to eat, to aspirating, to food allergies, dysphagia, and other issues. It has taken years and tons of work to get him to the point he's at - wanting to eat even though his diet was greatly limited by the dysphagia (difficulty swallowing) and food allergies.
In the last few weeks, his system has gone to new extremes. Within minutes of eating ANY food he breaks out in massive hives, his throat gets gurgly and he's admitted to pain/weird feelings in his throat and chest. These are not avoidable - he has reacted to things like watermelon, chicken, banana, a chocolate rice bar, even blue slushie from Sonic. His CMS nurse had us get Epipens to keep with him at all times. Epipens are injections of epinephrine to use if he goes into respiratory distress from an allergic reaction.
I've been trying to get ahold if his GI for a few days and finally heard back from him today. It's not good news. Beans is not allowed ANY food whatsoever. None. He may have water and his special elemental (amino acid) formula thru his g-tube. He sees the GI at the end of July and we'll discuss things more then. The reactions are too severe to risk feeding him.
NPO is bad enough before surgery. It is HELL for a 9 year old boy who has recently discovered a love of eating that most of us are born with. I know we have to do it for his safety. We live 45 minutes from the nearest hospital and if his throat swelled shut, even with the Epipens, it would be a really critical situation. I know all that.
But I also know that Beans loves to eat. I know how horrible NPO was when he had to do it before. I know how aware he is of being "normal." I know how much he missed out on this past year with his limited diet, and now I have to take away all of that. I will do it, I have to do it. But my heart is broken.
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