E ʻoluʻolu e hana i kēia mea inā hoʻopiʻi kāu keiki e pili ana i ka ʻeha hui

Anter

• ʻIke wale wau ua hewa kekahi mea ...
• No nā mākua, ʻehaʻeha kēia
• E hana paha ʻo ia me kēia no ke koena o kona ola ...
• Eia ka mea e hana ai ke hoʻomaka kāu keiki e namunamu e pili ana i ka ʻeha pū

Hoʻopili mākou i nā huahana a mākou e manaʻo nei he pono no kā mākou poʻe heluhelu. Inā kūʻai ʻoe ma o nā loulou i kēia ʻaoʻao, loaʻa iā mākou kahi kōmike liʻiliʻi. Eia kā mākou hana.

Ma kahi o ʻehiku mau pule aku nei, ua haʻi ʻia mai iaʻu e loaʻa paha i kaʻu kaikamahine i ka ʻōpio ʻōpio (JIA). ʻO ia ka pane mua i kūpono - a ʻaʻole i makaʻu loa iaʻu - ma hope o nā mahina o ke kipa ʻana i ka haukapila, nā hoʻokolohua hoʻowahāwahā, a me ka hōʻoiaʻiʻo i loaʻa i kaʻu kaikamahine nā mea āpau mai ka meningitis a i ka hikoko lolo i ka leukemia. Eia kā mākou moʻolelo a me ka mea e hana ai inā loaʻa i kāu keiki nā ʻōuli like.

ʻIke wale wau ua hewa kekahi mea ...

Inā ʻoe e nīnau iaʻu pehea i hoʻomaka ai, e hoʻihoʻi wau iā ʻoe i ka pule hope loa i Ianuali i ka wā i hoʻomaka ai kaʻu kaikamahine e namunamu no ka ʻāʻī o ka ʻāʻī. Wale, ʻaʻole ʻo ia namunamu maoli. E haʻi ʻo ia i kekahi mea e pili ana i kona ʻāʻī e ʻeha ana a laila holo aku e pāʻani. Ua manaʻo wau ua hiamoe paha ʻo ia a huki i kekahi mea. Ua hauʻoli loa ʻo ia a inā ʻaʻole i kūleʻa ʻia e nā mea āpau. ʻAʻohe oʻu hopohopo.

ʻO ia a ma kahi o hoʻokahi pule ma hope o ka hoʻomaka ʻana o nā hoʻopiʻi mua. Lawe wau iā ia ma ke kula a ʻike koke ua hewa kekahi. No hoʻokahi, ʻaʻole ʻo ia i holo e aloha mai iaʻu e like me ka maʻa mau. Ua hele ʻo ia i kēia ʻūlū liʻiliʻi e hele ana ke hele wāwae ʻo ia. Ua haʻi ʻo ia iaʻu ua ʻeha kona mau kuli. Aia kahi leka mai kāna kumu e ʻōlelo ana e hoʻopiʻi ana ʻo ia e pili ana i kona ʻāʻī.

Ua hoʻoholo wau e kāhea wau i ke kauka no kahi manawa i kekahi lā aʻe. Akā i ko mākou hoʻi ʻana i ka home ʻaʻole hiki iā ia ke hele wāwae i ke alapiʻi. ʻO kaʻu keiki 4 makahiki ʻeleu a olakino kahi maloʻo o nā waimaka, e noi ana iaʻu e hāpai iā ia. A i ka hele ʻana o ka pō, ʻoi aku ka ʻino o nā mea. Aia a hiki i kahi i hina ai ʻo ia i lalo i ka papahele e uwē ana no ka ʻeha o ka ʻāʻī, ka ʻeha o ka hele ʻana.

Kuhi koke wau: he meningitis ia. Ua kiʻi wau iā ia a hele i ka ER a mākou i hele ai.

I ka manawa ma laila, ua maopopo ʻaʻole hiki iā ia ke pelu i kona ʻāʻī me ka winking ʻole i ka ʻeha. Loaʻa iā ia kēlā ʻoʻopa pū kekahi. Akā ma hope o kahi hoʻokolohua mua, X-ray, a me nā hana o ke koko, ua manaʻoʻiʻo ke kauka a mākou i ʻike ai ʻaʻole kēia he meningitis bacteria a i ʻole kahi pilikia. "E hāhai me kāna kauka i ke kakahiaka aʻe," ua haʻi ʻo ia iā mākou i ka wā e hoʻokuʻu ʻia ai.

Ua komo mākou i loko e ʻike i ke kauka o kaʻu kaikamahine i ka lā aʻe. Ma hope o ka nānā ʻana i kaʻu kaikamahine liʻiliʻi, ua kēnā ʻo ia i kahi MRI o kona poʻo, ʻāʻī, a me kona kuamoʻo. "Makemake au e hōʻoia ʻaʻohe mea e hana ana ma laila," i ʻōlelo ʻo ia. Ua maopopo iaʻu ke ʻano o kēlā. Ke ʻimi nei ʻo ia i nā tumors i ke poʻo o kaʻu kaikamahine.

No nā mākua, ʻehaʻeha kēia

Ua makaʻu wau i ka lā aʻe i ko mākou hoʻomākaukau ʻana no ka MRI. Koʻu kaikamahine pono e waiho ma lalo o anesthesia no ka mea o kona mau makahiki a me nā hola ʻelua pono ʻo ia e noho hāmau. I ka wā i kāhea mai ai kāna kauka iaʻu i hoʻokahi hola ma hope o ka pau ʻana o ke kaʻina hana e haʻi iaʻu ua maopopo nā mea āpau, ua ʻike wau e paʻa ana koʻu hanu no 24 mau hola. "Loaʻa paha iā ia kekahi maʻi viral ʻano ʻē," ua haʻi ʻo ia iaʻu. "E hāʻawi kāua iā ia i hoʻokahi pule, a inā paʻakikī kona ʻāʻī, makemake wau e ʻike hou iā ia."

I loko o kekahi mau lā, ua hele a maikaʻi kaʻu kaikamahine. Ua kū ʻo ia i ka namunamu no kāna ʻāʻī. ʻAʻole wau i hana i kēnā kau hope.

Akā i loko o nā pule i hala, ua hoʻomau ʻo ia i ka hoʻopiʻi liʻiliʻi e pili ana i ka ʻeha. Ua ʻeha kona pūlima i kekahi lā, kona kuli i ka lā aʻe. Me he mea lā ke ulu mau nei nā ʻeha iaʻu. Ua manaʻo wau e loaʻa ana paha iā ia nā maʻi āpau i hōʻeha i kona ʻāʻī i ka mua. ʻO ia a hiki i ka lā i ka hopena o Malaki i ka manawa aʻu i hāpai ai iā ia mai ke kula a ʻike i kēlā ʻano ʻeha o kāna mau maka.

ʻO kekahi pō ia o nā waimaka a me nā ʻeha. I ke kakahiaka aʻe aia wau ma ke kelepona me kāna kauka e noi ana e ʻike ʻia.

I ke koho maoli ʻana, ua maikaʻi kaʻu kaikamahine liʻiliʻi. Hauʻoli a pāʻani hoʻi ʻo ia. ʻAneʻane lapuwale wau no ka noʻonoʻo nui e pili ana i ke kiʻi ʻana iā ia i loko. Akā ua hoʻomaka kāna kauka i ka hoʻokolokolo a ua maopopo koke ua laka paʻa ʻia ka pulima oʻu kaikamahine.

Ua wehewehe kāna kauka aia he ʻokoʻa ma waena o ka arthralgia (ʻeha pū) a me ka maʻi o ke kuamoʻo (ka pehu o ka ami.) ʻO ka mea e hana nei i ka pulima o kaʻu kaikamahine ʻo ia ka mea hope loa.

Ua weliweli wau. ʻAʻole wau i manaʻo ua lilo kāna pūlima i kekahi ʻano o ka neʻe. ʻAʻole ia ka mea e hoʻopiʻi ai e pili ana i ka hapa nui, ʻo ia kona mau kuli. ʻAʻole wau i ʻike iā ia e hōʻalo ana i ka hoʻohana ʻana i kona pulima.

ʻOiai, i kēia manawa ua ʻike wau, ua ʻike wau i ke ʻano o ka uku nui ʻana no kāna pulima i nā mea āpau āna e hana nei. ʻAʻole maopopo iaʻu ka lōʻihi o ka hana. ʻO kēlā ʻoiaʻiʻo wale nō ka mea e hoʻopiha iaʻu me ka hewa nui o ka makuahine.

E hana paha ʻo ia me kēia no ke koena o kona ola ...

ʻO kekahi ʻāpana o nā X-ray a me nā hana o ke koko i hoʻi mai ka hapa nui o ka maʻamau, a no laila ua waiho ʻia mākou e ʻike i ka mea e hana nei. E like me ka wehewehe ʻana o ke kauka a kaʻu kaikamahine iaʻu, nui nā mea i hiki ke kumu i ka maʻi kōā i loko o nā keiki: kekahi mau ʻano autoimmune (e like me ka maʻi lupus a me Lyme), ka maʻi ʻōpiopio idiopathic (ʻo ia mau ʻano he nui), a me ka leukemia.

E wahaheʻe paha wau inā wau i'ōlelo i kēlā mea hopeʻole e hoʻomau iaʻu i ka pō.

Ua kuhikuhi koke ʻia mākou i kahi rheumatologist pediatric. Kau ʻia kaʻu kaikamahine ma luna o ʻelua mau manawa naproxen e kōkua ai me ka ʻeha ke hana mākou i ka loaʻa ʻana o kahi hōʻailona kūhelu. Makemake wau e hiki iaʻu ke ʻōlelo ʻo ia wale nō ka mea i hoʻomaikaʻi i nā mea āpau, akā ua loaʻa iā mākou kekahi mau ʻeha ʻeha ikaika loa i nā pule ma hope mai. I nā ala he nui, ʻeha wale ka ʻeha o kaʻu kaikamahine.

Aia nō mākou i ke kahua hōʻoia. ʻIke maopopo nā kauka he ʻano JIA kāna, akā hiki iā ia ke lilo i ʻeono mau mahina mai ka hoʻomaka mua ʻana o nā ʻōuli e ʻike pono no ia a hiki ke ʻike i kēlā ʻano. Hiki paha i ka mea a mākou e ʻike nei ke waiho nei i kahi hopena i kekahi virus. A i ʻole hiki iā ia ke loaʻa kekahi o nā ʻano o JIA ka hapanui o nā keiki e hoʻōla mai ma hope o kekahi mau makahiki.

Hiki nō paha i kēia ke lilo i mea e pili pū ana me ia no kona koena o kona ola.

Eia ka mea e hana ai ke hoʻomaka kāu keiki e namunamu e pili ana i ka ʻeha pū

I kēia manawa, ʻaʻole maopopo iā mākou ka mea e hiki mai ana. Akā i ka mahina i hala iho nei ua hana nui wau i ka heluhelu a me ka noiʻi ʻana. Ke aʻo nei wau ʻaʻole maʻamau iki kā mākou ʻike. Ke hoʻomaka a namunamu nā keiki e pili ana i nā mea e like me ka ʻeha hui, paʻakikī e lawe iā lākou i ka mea nui i ka wā mua. Heʻuʻuku lākou, ma hope o nā mea āpau, a ke hoʻolei lākou i kahi hoʻopiʻi a laila holo i waho e pāʻani, maʻalahi ka manaʻo he mea liʻiliʻi a i ʻole kēlā mau ʻeha ulu ulu hewa ʻole. He mea maʻalahi ke lawe i kahi mea liʻiliʻi ke hoʻi hou ka hana koko, i hiki ke hana ʻia i loko o nā mahina mua o ka JIA hoʻomaka.

No laila pehea ʻoe e ʻike ai i kēlā ʻeha a lākou e ʻōhumu nei, ʻaʻole ia he mea maʻamau a nā keiki āpau e hele ai? Eia kaʻu ʻōlelo aʻoaʻo hoʻokahi: Hilinaʻi i kou instincts.

No mākou, ua iho nui ka hapa i ka ʻōpū o mommy. Mālama maikaʻi kaʻu keiki i ka ʻeha. Ua ʻike wau iā ia e holo poʻo-i mua i kahi pākaukau kiʻekiʻe, e hāʻule ana i hope no ka ikaika, lele wale i luna ʻakaʻaka a mākaukau e hoʻomau i ka hele. Akā i kona wā i hoʻoliʻiliʻi ai i nā waimaka maoli no kēia ʻeha ... ua ʻike wau he mea maoli kēlā.

Hiki i nā kumu he nui no ka ʻeha hui i nā keiki me ka nui o nā ʻōuli pū. Hāʻawi ʻo Cleveland Clinic i kahi papa inoa e alakaʻi i nā mākua i ka hoʻokaʻawale ʻana i nā ʻeha ulu mai kahi mea ʻoi aku ka koʻikoʻi. Nā ʻōuli e makaʻala no ka:

• ʻeha mau, ʻeha i ke kakahiaka a palupalu paha, a i ʻole ka pehu ʻana a me ka ʻulaʻula i kahi hui
• ʻeha hui pū me ka ʻeha
• palupalu, nāwaliwali, a palupalu paha

Inā loaʻa i kāu keiki kekahi o kēlā mau ʻōuli, pono e ʻike ʻia e kā lākou kauka. ʻO ka ʻeha hui pū ʻia me ke kuni kiʻekiʻe mau a i ʻole ka pāhaʻi paha he hōʻailona ia o kekahi mea ʻoi aku ke koʻikoʻi, no laila e lawe koke kāu keiki i ke kauka.

Kākaʻikahi iki ʻo JIA, e hoʻopili ana ma kahi o 300,000 mau pēpē, nā keiki, a me nā ʻōpio i United States. Akā ʻaʻole ʻo JIA wale nō ka mea e hiki ke hōʻeha i nā ʻeha pū. Ke kānalua ʻoe, e hāhai mau ʻoe i kou ʻōpū a ʻike ʻia kāu keiki e ke kauka nāna hiki ke kōkua iā ʻoe e nānā i kā lākou mau ʻōuli.

ʻO Leah Campbell kahi mea kākau a me ka hoʻoponopono e noho ana ma Anchorage, Alaska. ʻO kahi makuahine ma ke koho ʻana ma hope o ka serendipitous series o nā hanana i alakaʻi ʻia i ka hānai ʻia o kāna kaikamahine, ʻo Leah kekahi mea kākau o ka puke "Wahine Hoʻokele Hoʻokahi” a ua kākau nui i nā kumuhana o ka infertility, adoption, a me nā mākua. Hiki iā ʻoe ke hoʻohui me Leah Facebook, ʻo ia pūnaewele, a ʻO Twitter.