A New Chapter for Jeb

A few months ago, I came home from a check up for Jeb so happy and excited that I decided to blog about it. As I wrote the words regarding how well Jeb was doing, I thought that maybe I should delete them so I didn't jinx myself. Today, I can't even bring myself to look back on the post because we got hit hard. 'Jinx.'

Let's start at the beginning. Last week, Jeb started to get a cough. It didn't sound too bad, but I took a cough swab because I want to start learning which coughs are bad and which ones are harmless. I didn't hear back after 5 days, which annoyed me. So, I took him to our GP, who reported nothing in Jeb's chest and sats of 98. Ahhh, I breathed a sigh of relief. Until my phone rang 3 hours later. Dr. Holt, Jeb's CF consultant, was calling with results of his cough swab. There was something in her voice that didn't sound quite right and then she said it - 'psuedomonas.'

The mention of psuedomonas can bring chills down a CF mum's spine. It's a nasty little bug that would ignore coming to you or me, but loves to snuggle deep down into the warmth of Jeb's mucasy lungs. And the kicker is that it also doesn't like many antibiotics. It's quite a fighter. So, to get rid of it, you need to be aggressive.

Drugs. We haven't dealt much with them, but I have heard of many common CF drugs. Dr. Holt told me what she prescribed saying the after 3 months (that info was like a kick in a gut for me!), the colomycin would take care of it. If that didn't work, they'd prescribe Tobi. Ding, ding, ding! I knew Tobi and asked why couldn't Jeb just have Tobi - sounds like the better drug and I knew they prescribed it in the states. The answer - 'too expensive, NHS won't pay for it.' Another kick in the gut and I wasn't going to take it. I hung up and started researching. Thanks to my friend in the states whom has a CF daughter Jeb's age, I got all the info on what the states did. It didn't line up.

Tom called Dr. Hull, the head of the CF Center at John Radcliffe hospital and got the answers that we were looking for. It's not about expense (phew) - these are all extremely expensive, but it's more about the right drug for Jeb. The US has put all FDA funding into Tobi and is just started with Colomycin. While Tobi may work better for adults and some children, Jeb's case calls for this. He then named off studies that supported this. Not only that, but he explained the treatment - after a month, the psuedomonas should be gone and then two more months to make sure.

It's not about which doctor (or country for that matter) is right, but the fact that Dr. Hull explained the treatment and why it's the right one for Jeb. Tom and I relaxed immediately and felt confident that Jeb was going to be ok. Each bump in the road is a learning experience and I'm so glad that I am getting wiser so that I can confidently help Jeb and be his voice.

So, what happened? Today we started Jeb on ciprofloxacin, and oral antibiotic, and the colomycin, a nebulised drug. We went in to learn how to use it. The nurse and the rep for the machine spent a good hour and fifteen minutes showing us how to put it together and clean it. They also warned us that Jeb was going to freak out. Hmmm. So, we tried it. The mask was put on and Jeb breathed it in, giggled, breathed, etc. The rep's mouth was wide open - he said he'd never seen a child that good. (Thanks for the prayers everyone!). The entire treatment lasted 2 minutes. Amazing!

So we step into yet another chapter in our battle with CF. We had hoped that it wouldn't be so soon, but knew that at some point we would be here, doing this. The great thing is that Jeb doesn't care and doesn't know any different. This is the life that he has always known and all that matters to him is that he gets a little cuddle when he needs it. I'm always happy to oblige.

Our monthly meds and machine for the next three months (note that he usually has only the two small dark bottles in the back)