Zoe's hospital stay went well. She was in for 5 days then got to go home. She was quite happy! She went home on 2 i.v. antibiotics, Tobra and Timentin, every 8 hours. That puts me starting i.v.'s at 10 pm finishing at 12. Getting up at 5:00 a.m. to get them to room temp, starting at 6:00 a.m., finishing at 8:00 a.m. Then doing it all again at 2:00 p.m. Plus an hour of breathing treatments and cpt 2 times a day. It is a full time job just taking care of her medical needs. She is showing improvement. Her cough had decreased in frequency and junkiness.
We went to her CF appt. Friday, thinking the PICC would be pulled and we would be done with i.v.s. Her doc said, I have good news and bad news...the good news is we are stopping the Tobra. The bad news is we are continuing the Timentin for another week. She had just coughed up quite a bit of yucky mucus on the way to clinic. Ugghh. So they weren't quite ready to let her be i.v. free.
Now, Zoe was happy. You see, the worst thing about a PICC and the i.v.s to her is the bandage being removed. It has to be changed once a week. She cries, big alligator tears...."Please don't take the band-aid off...." It is so sad. She has to be tough for so many things...tons of oral meds, hours of breathing treatments & cpt, i.v.'s, but you get to that bandage thing and she loses it. Way too much for a 4 year old.
Yes, I suppose I am feeling sorry about now. It happens. I hate CF. I hate what it does to Zoe, what it does to everyone that has this terrible disease.
We lost 2 cf'ers this week. Young people in the prime of their lives. I can do nothing but pray for their families. It makes you feel so helpless.
So...enough whining...off to take Timentin out of fridge....
Thank you for you thoughts and prayers for Princess Zoe,
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