Thursday, December 5, 2013

My Energy Reserve

Drew is getting sick again. Well, not really again as much as he's not ever really getting better. It's a little hard to explain, but I'll give it a try. Last March, Drew started to culture an antibiotic resistant bacteria in his lungs called Achromobacter. While a bacteria in a petri dish may or may not respond to different antibiotics, the reaction of the bacteria to the antibiotics inside the body isn't always the same. The achromobacter that Drew cultured appeared to be resistant to most antibiotics in a petri dish but we tried anyway and Drew had a positive response to a few of them. His symptoms would disappear for a period of time but would always return and we continued to culture achromobacter. After months of trying to suppress symptoms and eradicate this beast, we had to move on. There are literally no other options suitable for Drew to try to get rid of this bacteria, and trust me I have searched the globe. A common practice in CF, to manage symptoms and keep bacteria suppressed to a point where it's not symptom causing, is cycling inhaled antibiotics on and off for different periods of time. It's a reasonable way to manage these different and persistent bacteria and prevent them from casing lung damage by keeping the bacteria suppressed to a sort of non-damage causing degree. Anyway, we've been cycling Drew on an inhaled antibiotic called Ceftazadime since this summer, 15 days on and then 15 days off. The problem is that he hardly makes from the end of an "on" period to the beginning of the next without. About a week after he finishes his 15 day on cycle, he starts coughing quite a bit, his oxygen saturations start to decline, his energy level bottoms out and we end up starting the antibiotics again to help bring him back down. As time has gone on, these episodes that occur during the off cycles seem to be getting worse, and today we decided that he needs a bronch, a tune up with IV antibiotics, and then a CT scan to determine if all of these exacerbations are causing lung damage. Lung damage is inevitable, but it hasn't happened yet and I am not ready to see it. Many people with CF start to develop lung damage or bronchiectasis early, so it wouldn't be abnormal if we saw it on a CT scan, but it still sucks.
Right now we are in a bit of a waiting period. His doctor is going to get a bronchoscopy scheduled, and since they have to sedate him for the procedure, they will place a PICC line at that time to start the IV antibiotics. Drew started the inhaled antibiotics last night, so he's had several doses now as we do them 3x a day, but his oxygen levels haven't yet gone back up to where they should be. If they don't start to get back toward normal tomorrow then they will admit him to the hospital where the bronchoscopy procedure and PICC line can be expedited. It would mean spending a few days in the hospital, but after the procedure we could probably go home and finish the IVs at home. He will probably respond to the inhaled antibiotics at home like he usually does, but the IVs will hopefully work a little better and give him more and longer periods of time without this bacteria causing a problem.
I know this all sounds crazy and complicated, and it sort of is, but it's also par for the course. Tune ups are commonplace, done in an effort to return patients to their baseline, but it doesn't make it any less stressful or scary. I hate to see Drew not feeling well. It's mentally, emotionally, and physically exhausting trying to figure out what's going on, what's causing it, what our options are for fixing it. The rest of my crew is out of sorts as we spend hours doing treatments and on the phone with doctors and schedulers and concerned family and friends, missing lessons and appointments but needing to prioritize. I will not lie, it is not easy. We are stressed and tired and guilty about who we should be spending time with and what we could have done differently to prevent the need for this even though we know we are doing the best that we can.
At times like these, I wish that I would have appreciated those down times a little more, the opportunity to bank a little bit of energy. I wish I would have gone to bed earlier, said no to a meeting or a dinner, and just taken a deep breath and relaxed. I don't know that it would make a difference, but during times like these I need to dip into my energy reserve, and it is dangerously low. Patience is shot, tempers are short and I am tired.
We should have more information by the end of the day tomorrow. I'm hopeful that his oxygen will start to go back up and that his doctor can get him scheduled for what he needs to have done sometime in the next week or so. I will try to keep the blog updated with how he's doing, though i've been noticeably absent from the blog for the past few weeks. I have so much fantastic stuff going on, stuff that will change the face of this stupid disease, and I will blog about it soon!

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