66 roses: March 2015

It has been a rough week. At this time last week we started to have the conversation with Drew's doctor about whether IV antibiotics would be necessary to get him well again. I say it was out of the blue, but maybe deep down I knew, or feared, it was coming. It sort of felt a little like everyone on the healthcare team had had this conversation without me - if his cough still isn't improving then we need to talk to mom about getting him on IVs. Well, his cough wasn't improving, his BMI was down along with his appetite, and his lungs didn't sound great. I sort of wish I had been included in the conversation, if there was one, about this plan, because I feel like I was blindsided a bit. It sounds strange to even write that because this isn't our first rodeo. There is always a chance that we will need a hospital admission or a course of IVs. He looks well, everyone says, and while I agree, I knew that he wasn't. The cough had been going on for more than a month, and it was time. I just wasn't ready for the conversation, and that sucked.

One of the hardest parts of the conversation about starting him on IV's was which antibiotics to use. The problem that we have is that Drew has a multi-drug resistant bacteria in his lungs called achromobacter. In CF patients, often times treatment is based on symptoms, and this bacteria seems to have permanently increased his cough and taken away his appetite. He's had this bacteria in his lungs for over two years, and there is little hope that we will get rid of it. Drew spends 3 hours a day inhaling a series of medications to try to keep this bacteria suppressed so that he can live and breathe well. This bacteria has one antibiotic that seems to be effective in helping him to stay well, and that's a medication called Ceftazadime. The concern that we have is that, like anyone else and any other antibiotic, if will eventually lose its effectiveness, and that's really scary for me. To know that he is 5 and only has 1 antibiotic that works is scary. Does this mean he's going to die? Not tomorrow. Probably not this year or next or the year after. Hopefully, dear God hopefully, he will be with us forever. Everyone tells me we will cross that bridge when we come to it, but in the meantime I'm searching desperately for anything that might offer a new hope. I cannot wait until we get to that bridge to figure out how we will cross it.

So when we were deciding which antibiotics to treat him with, we decided to use two medications that his bacteria doesn't usually respond to well. Why, you ask? When done via IV, the hope is that they will work together to attack and suppress the bacteria and keep it from causing problems. We decided to do this because his body needs a break from Ceftazadime so that it remains an effective treatment option for us. The concern with using the other two medications is that they won't pack the punch that we know the one that works usually does. So we risk being on IVs for a longer period of time if we run into the need switch the medications because he's not getting better.

The good news is he seems to be improving. His cough is down from what it had been earlier this month, and his appetite is like I've never seen it. The homecare nurses say that his lungs sound clear. He's just not back to 100%. I worry that we will get him to 80% and end up on IVs again before we want to be. We are going to hang on and keep trying, hoping that this works, and make a decision on whether he needs to try something new later this week.

Life in our house when Drew is on IVs is sort of miserable. The positive spin is that at least we aren't in the hospital. However, we have nurses coming two or three times a week, sometimes twice a day, to draw labs to make sure that the medication he is on is potent enough to kill his bacteria without being too potent to kill his kidneys. He needs regular dressing changes on the PICC, which are awful because its like an incredibly well stuck band-aid that's twice the size and stuck on to an open wound. He hates it, and so do I. If you added up the time that I have to spend on the phone with insurance, homecare nurses, homecare pharmacy, and his medical team, I would estimate 2+hours a day. They're all just a quick 10-15min call, or series of calls when we have to leave a message and then find time to call back when they return your message with a message. That's all on top of our 3 hours of regular maintenance treatments per day. Our schedule is completely screwed up because of the times of day that we need to give the medications - 7:30am 8:30am, 3:30pm, 11:30pm - and the times that we must be available for nurses to come and draw labs, usually two and again 6 hours after we dose one of the medications. Homecare delivery drives are knocking on our door with supplies from 8am until 9pm, which I am so grateful for, but I'm overwhelmed. And the exhaustion isn't helping that any.

Drew asked us, jokingly but nonetheless, if the PICC was going to make him die. No sweet boy, the PICC is our hope for keeping you very much alive. It highlighted that we haven't had time to help him or any of the kids really understand what is going on, both with this acute illness but also overall with regard to CF. We don't keep any secrets, but we answer questions like you would answer questions related to anything a 6yr old or 4yr old might ask, by addressing what they asked and not going to far off track so as to confuse or scare them. I've found that just listening to them provides far greater insight than asking does. Its so hard at the end of a long day to find the time and patience to to listen to them at bedtime, but they need it. It's also hard that the listening is often interrupted by one of those phone calls that I have to take or knocks on the door delivering medication that I must sign for.

I need to publicly thank our family and friends for showing up when we need them. From delivering dinner to facilitating work phone calls that I cannot attend to sending coffee and coming by to say "you need a drink and a distraction", to just listening to me complain, and worry, and wonder...it is all so appreciated. I may not have time to write you a thank you note, or the energy to even tell you in person, but we appreciate all of it and all of you.

You may have seen something that was recently shared on Twitter about a day that I spent partnered with Susannah Fox in an empathy building exercise organized by Smart Patients. The project was called "Just for a Day", and I spent the day sharing all of the details of what its like when cystic fibrosis is a part of your life. You can read the first part of the story that Susannah captured by clicking here . The outpouring of love and compassion and empathy has been overwhelming, in a mostly good way. It's hard to do this CF mom job, and so many of us do it quietly, trying to fit in with the rest of the world, when really our lives are nothing like those in the rest of the world. The congnitive burden is heavy, and we are forced to make a ton of decisions many times a day. We weigh benefits against risks daily, hourly, talking with care teams and others who have walked in our shoes. While all advice sent and recommendations made for ways that we could better care for Drew or keep him healthy are recognized as well intended, we are already struggling with the weight of the decisions that we have to make when things don't go as planned. And it's often not because we did or did not do something, but because the complexities of this disease and the path it takes regardless of effort. Please know and trust that we are trying the best that we can, and please keep sending your support and advice and evidence, but kindly leave your judgement at the door. We are trying.

The next time you see me or text me or call me and I don't answer or seem flip or look tired, don't take it personally. I am totally exhausted. I'm physically tired from running this life. I'm mentally tired from having to make at least a dozen serious decisions a day, and manage 4 different people and a disease that has a life of its own. I'm emotionally tired from the worry about the decisions that I make, related to and not related to CF. I know that this, too, shall pass, but right now I feel like we are in the trenches and it is exhausting.

Thats all for now,
Me

66 roses

Tuesday, March 31, 2015

Dear everyone,

Tuesday, March 24, 2015

What we need most

Saturday, March 14, 2015

He's FIVE (and he's still alive!)