Tuesday, November 9, 2010

The Vest

I've got a lot of random things to talk about tonight. I wish I could sit in front of a computer all day everyday and write down my thoughts when they come to me because by the time the madness of the day is over and I get the chance to sit down for a few moments of relaxation a lot of those thoughts have gone as quickly as they came to me.

We were back at the doctor again today. Drew has been on antibiotics for a week now and still doesn't sound any better. He's not sick, at least I don't think so. He just sounds like he is. He was put on antibiotics about a week ago for a cold that had been lingering for about 2 weeks, so we're on the 3rd week of a "cold" with no changes and they decided they wanted to listen to him. It was me and the 3 headed downtown because the appointment was made at 10am for 1pm. They were happy with the way he sounded, in as much as he was moving air, not retracting and his lungs sounded clear. But this noisy, rattled breathing is just confusing and concerning. They think that what we're hearing is mostly from the malacia, but there is extra mucus down there getting hung up on his floppy trachea and making him rattle. They decided to start hypertonic saline. Some of you may be familiar with the term "hypertonic saline" if you've been voting for the Pepsi Refresh Project grant. Its a concentrated saline solution that can be inhaled and is currently being tested in infants to see if the replacement of salt in the body can help to keep the mucus secretions thin and moving appropriately. It has been tested and proved effective in adults but hasn't been studied in infants (which is why you should vote daily for the Pepsi Refresh Project!). ANYWAY, since there is some data to support the use of hypertonic saline, the doctors decided to give it a try with Drew. We will start it tomorrow morning. Hopefully it will help to thin out some of the mucus which will help him to clear it more effectively and start sounding better. They did a deep throat culture too, just to make sure there's not something growing down in his lungs that isn't being addressed with the current antibiotic.

So there's that. I always hate the waiting that comes along with a culture. It takes a couple of days for the results to come back and I'm just always worried that its not going to be good news. Antibiotics are useful...on most things. But if something were to show up, like B.Cepacia, Pseudomonas, or MRSA it would just suck. I hope that in Drew's lifetime a cure can aleviate this constant worry and fear.

I also talked to the Respiratory Therapist about changing our technique of airway clearance from CPT (Chest Physiotherapy) to the Vest. Every morning, every afternoon and every evening we sit with Drew for 30-45 minutes of nebulizer breathing treatments of various medications followed by 30 minutes of beating on Drew's chest, sides and back with a cupped hand (or similar little device designed specifically for this task.) to loosen up the mucus in his chest. The whole process takes anywhere from and hour to an hour and a half or up to 2 hours depending on the number of nebulized med's we're giving him. The Vest is basically, well, a vest that you wear that hooks up to a machine and compresses and vibrates. It is proven just as effective as CPT and it takes just as long to do, but we can do the breathing treatments during the vest treatment, whereas with CPT we had to do breathing treatments first followed by the CPT because both required our hands to do. With the vest, we put it on him, set the machine to run, pour a nice glass of wine, do his breathing treatments and all is over around the same time, in just about 30 minutes. Thats an hour and change saved every day. I'll take it.

Here's the thing about the vest. You have to be at least 18in around your chest to get a vest. Our portly little fellow met that criteria about a year before they really expected him to. CF kids (hasty generalization) tend to be on the thin side because most, like Drew, have pancreatic insufficiency meaning their pancreas doesn't secret the enzymes that break down fat and therefore they need to take medication to help with that. With this insufficiency, a high fat diet is encouraged to replace the fat often lost because of the body's inability to break it down. So much research has come such a long way in such a short time that our dietician and I'm sure many dieticians with many other CF centers work so closely to manage fat intake and enzyme supplementation to ensure proper weight gain and growth. Its a lot of work, but we've been successful at fattening up our little man. So CF kids typically don't get a vest until they are a year or two old, so we've been told. But there's really no reason that he can't get one. Their only criteria is that he can sit on his own and he can certainly do that. So hopefully sometime in the near future (read: sometime before our insurance changes on Jan.1) we will be able to make that switch.

Finally, little man got a tooth. Not Lily, whose been screaming her head off for the past 3 weeks, drooling like a fool and chewing on anything that comes within reach. It came quickly and quietly, kind of how Ella got her teeth. There was no extra drool. There was no lack of sleep. A bite on the chin is how I knew it was in there. Hopefully the rest come in just as smoothly!

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