Life is hard. Chronic illness is hard. CF is hard. Transplants are really hard. The treatments. The doctor appointments. The medications. The inconsistency. The fear. The hope. The reality. The surgery. The recovery. The waiting. The hoping. The ups and downs. So many ups and downs.<\/p>\n\n\n\n
A lot has happened since my last post\u2026. A LOT!\u00a0 We thought we were going to be discharged from the hospital June 18, but it was determined that keeping the chest tube in longer, blasting it with some powerful meds, and remaining in the hospital longer was in her best interest. Last place we wanted to be, but better a few more days now versus a few more weeks down the road. We finally headed back to our apartment on Monday, June 23. Tuesday, we had almost four hours of testing and visits on the ENT. \u00a0Her vocal cord is still paralyzed but her body is compensating. End result, she can\u2019t tip her head back to drink, but she is allowed to drink normally through a straw and finally eat ice cream! We will reevaluate in 6 months and hope to see continued improvement. Wednesday, after almost a 3-hour delay in surgery start time, she had two ports removed and a new power port placed; she finally got something to eat at 5:30 pm! Lots of pain with this one. For some reason, after almost being in place for 13 years, her initial port just did not want to let go! CT scan today, doctor appointment and lung function test tomorrow, and then…….. hopefully ……. heading home to Green Bay early evening.<\/p>\n\n\n\n
This journey is hard. It is hardest physically on the patient for sure, but it is hard on the caregivers too. Hard on the family members who remain at home. It is just REALLY REALLY hard. The silence, or lack of updates isn\u2019t intentional, but some days it doesn\u2019t even feel like I have a moment to breathe. I definitely don\u2019t have the energy to remember who offered help, even though I most likely really need it. We just keep chugging along, one moment at a time.<\/p>\n\n\n\n
If you want to help (and this applies to anyone who you might think needs your help, for any reason), please reach out and ask. \u2018Hey, you, how can I help today?\u2019 \u00a0\u2018Can I pick up or drop off anything for you?\u2019 \u2018I have a free hour, anything you need?\u2019 \u00a0\u2018I am going to be in your neck of the woods, need anything?\u2019 Don\u2019t assume a homecooked meal is wanted, because that doesn\u2019t work for everyone, and yet it might be exactly what is wanted. Just ask. Ask, \u2018How can I help? You name it, I\u2019ll do it.\u2019 Don\u2019t say \u2018Call if you ever need anything\u2019 because we won\u2019t call. We can’t call. We are too exhausted. We have already forgotten your offer, not intentionally, but our focus is elsewhere. We don\u2019t mean any disrespect, but we are barely surviving most days.\u00a0 The reason for the silence is because sometimes we just can\u2019t do one more thing.<\/p>\n\n\n\n
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Life is hard. Chronic illness is hard. CF is hard. Transplants are really hard. The treatments. The doctor appointments. The medications. The inconsistency. The fear. The hope. The reality. The surgery. The recovery. The waiting. The hoping. The ups and downs. So many ups and downs. A lot has happened since my last post\u2026. A […]<\/p>\n","protected":false},"author":1988,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-219","post","type-post","status-publish","format-standard","hentry"],"acf":[],"_links":{"self":[{"href":"https:\/\/cota.org\/cotaforteamerinc\/wp-json\/wp\/v2\/posts\/219","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/cota.org\/cotaforteamerinc\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/cota.org\/cotaforteamerinc\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforteamerinc\/wp-json\/wp\/v2\/users\/1988"}],"replies":[{"embeddable":true,"href":"https:\/\/cota.org\/cotaforteamerinc\/wp-json\/wp\/v2\/comments?post=219"}],"version-history":[{"count":0,"href":"https:\/\/cota.org\/cotaforteamerinc\/wp-json\/wp\/v2\/posts\/219\/revisions"}],"wp:attachment":[{"href":"https:\/\/cota.org\/cotaforteamerinc\/wp-json\/wp\/v2\/media?parent=219"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}