I know I kind of disappeared for a few months and I want to update everyone on how things have been going here. I have missed everyone and hope to be back here again.
Emily got very sick the week of that awful end of October snowstorm. We weren't able to take care of her as we should and I know that didn't help. She was sick through all of November, despite a couple oral abx and ended up inpatient on IV's as well as cleanout for partial obstruction. She was on home IV's for barely a week when she ended up back inpatient with a horrendous GI thing. Everything shut down, she had a high fever (which of course also had them worrying about a line infection), she was pooping chalk white- her bile ducts stopped working, I have not seen her so sick in years. She was in for 5 days and was gradually able to start eating again but we dealt with poop misery for weeks trying new meds, etc.
We finally got things the best they have been in over a year on a combination of Miralax & benefiber in Gatorade by tube daily, Actigall, and Amitiza- a chloride channel activator. She's continued with a lot of respiratory infection off and on and a CT last week at her clinic appt showed onset of significant sinus disease for the first time. She has an appt with her ENT in a couple weeks for a scope/exam to see what needs to be done.
Then all hell broke loose with Shawn. We've known all along he was a cf carrier and he has horrible asthma, actually has worse lung function than his sister. we thought we'd ruled out cf with a neg NPD. His asthma dr finally insisted on a pulmonary consult due to lack of control. Our 'consult' turned into a 90min appt picking apart his hx and reopening the cf can of worms. Then a week later he got sick. Really, really sick- all 3 kids caught it, Tim and even Emily got over it fairly quickly but he just never did.
We are approaching 7 weeks later and he is STILL not better. An asthma consult turned into multiple ped and pulmonary sick appts, sputum culture which showed a heavy growth of staph. Consecutive courses of zithromax, Augmentin, bactrim and starting the levaquin- and another culture still showed staph, and he is still sick. The levaquin and high doses of prednisone have helped the most. So we will see what happens when he finishes them. He is having a chest CT and then a bronch. He's been dx'ed with CRMS and cf is under consideration pending future cultures, how well his pft's respond to tx, and results of the CT and bronch, etc. Right now he is doing albuterol 4x a day along with Acapella and symbicort, and we wait and see for the rest of this testing. The last couple months have been so hard. He's been so sick and trying to push through it to go to school- falling asleep in class, he's lost so much weight, it's just so hard. And I never saw this coming, NEVER.
So... A lot going on here! Sorry so long- just wanted to update and let you know where I've been. <img src="i/expressions/face-icon-small-smile.gif" border="0"> hopefully things will settle down.
Emily got very sick the week of that awful end of October snowstorm. We weren't able to take care of her as we should and I know that didn't help. She was sick through all of November, despite a couple oral abx and ended up inpatient on IV's as well as cleanout for partial obstruction. She was on home IV's for barely a week when she ended up back inpatient with a horrendous GI thing. Everything shut down, she had a high fever (which of course also had them worrying about a line infection), she was pooping chalk white- her bile ducts stopped working, I have not seen her so sick in years. She was in for 5 days and was gradually able to start eating again but we dealt with poop misery for weeks trying new meds, etc.
We finally got things the best they have been in over a year on a combination of Miralax & benefiber in Gatorade by tube daily, Actigall, and Amitiza- a chloride channel activator. She's continued with a lot of respiratory infection off and on and a CT last week at her clinic appt showed onset of significant sinus disease for the first time. She has an appt with her ENT in a couple weeks for a scope/exam to see what needs to be done.
Then all hell broke loose with Shawn. We've known all along he was a cf carrier and he has horrible asthma, actually has worse lung function than his sister. we thought we'd ruled out cf with a neg NPD. His asthma dr finally insisted on a pulmonary consult due to lack of control. Our 'consult' turned into a 90min appt picking apart his hx and reopening the cf can of worms. Then a week later he got sick. Really, really sick- all 3 kids caught it, Tim and even Emily got over it fairly quickly but he just never did.
We are approaching 7 weeks later and he is STILL not better. An asthma consult turned into multiple ped and pulmonary sick appts, sputum culture which showed a heavy growth of staph. Consecutive courses of zithromax, Augmentin, bactrim and starting the levaquin- and another culture still showed staph, and he is still sick. The levaquin and high doses of prednisone have helped the most. So we will see what happens when he finishes them. He is having a chest CT and then a bronch. He's been dx'ed with CRMS and cf is under consideration pending future cultures, how well his pft's respond to tx, and results of the CT and bronch, etc. Right now he is doing albuterol 4x a day along with Acapella and symbicort, and we wait and see for the rest of this testing. The last couple months have been so hard. He's been so sick and trying to push through it to go to school- falling asleep in class, he's lost so much weight, it's just so hard. And I never saw this coming, NEVER.
So... A lot going on here! Sorry so long- just wanted to update and let you know where I've been. <img src="i/expressions/face-icon-small-smile.gif" border="0"> hopefully things will settle down.