Cystic Fibrosis (CF) does not define who we are, but it is an important part of our lives. By sharing our story, I hope to raise awareness and connect with others whose lives have been touched by CF.

Tuesday, January 19, 2010

Crazy Days Part 1: The Morning Mad Dash

I’m attempting to get back on the blogging track. When I started this blog, I really felt inspired to share my stories. And then the lazy days of summer turned into the busy days of fall i.e. the school year. My days go something like this:


The Morning Mad Dash

6:10 AM …beep, beep, beep, beep. The dreaded alarm. Once upon a time, I popped out of bed at that sound and happily began my day. That was when my worst fear was missing the bus. Nowadays, I am the bus, and I’m happy if I get my son to school before the janitor locks the doors. For the record, we’ve only been officially tardy twice in the past year and a half. That requires signing in at the office and does NOT make my anxiety-prone son a happy camper. On those days, I felt like the worst mom ever. If only I could harness that guilt and train it to slap me in the face every time I reached for the snooze button, maybe I’d snooze less often.

The goal is to be up and moving by 6:30 AM, so that we can get Alex’s treatments going. Fortunately Alex IS a morning person and is usually trying to get me out of bed between 6:10 and 6:30 AM. When I finally make my way downstairs, I hook Alex up to his VEST. The VEST is a form chest physical therapy or CPT, which Alex is required to do twice a day for 30 minutes and more often if he’s having any respiratory symptoms. Next, I get his breathing treatments ready. He starts with Albuterol, which is a bronchodilator. Alex uses a nebulizer and breathes in the mist, which lasts about 10 minutes. Next up is Pulmozyme, a drug created specifically for CF which acts like scissors, cutting up the DNA of the thick mucus & secretions the white blood cells leave in CF lungs. Pulmozyme lasts about 5-7 minutes. The last nebulizer is TOBI, an inhaled form of Tobramycin, which was also specifically created for CF. TOBI is used to kill Pseudomonas aeruginosa, which is a bacteria that can get in CF lungs and do some major damage if left untreated. Alex cultured Pseudomonas in December of 2007 and has been doing the TOBI rotation ever since. (TOBI is done 28 days on, 28 days off until at least 2 cultures have come back as “normal flora.”) Alex has gone off TOBI twice, but Pseudomonas has always shown up in his cultures within a couple of months. TOBI is the longest nebulizer, lasting about 20 minutes.

While Alex does his treatments, he usually watches a tv show or plays a video game. I used to always sit with him, but now, I often do other things, periodically interjecting, “Take DEEP breaths!” or “Keep Breathing!” Alex often “forgets to breath,” and I guess I think my interjections are helpful reminders. I should also note that the VEST and nebulizers are very noisy. So if Alex is watching tv, the volume is cranked up so as to be heard above all the noise. Then add me yelling from the next room every so often…you get the picture. Our mornings are very LOUD!

My “other things” include packing Alex’s lunch (if I was one of those well-organized moms, I would do that the night before…), get my 9 month old out of bed (He’s almost always smiling and happy. Such a patient boy!), change him, make & feed him a bottle, and settle him with some toys. At some point, I also throw some clothes on myself and get ready for the day!

The order of CF treatments is important, and our doctor and CF Care Team give us guidelines on how to complete these. Recently we were told that, in an ideal world, the order should be Albuterol (10 min), Pulmozyme (7 min), and then wait 30 minutes for the Pulmozyme to do it’s work. Next the VEST (30 min), and finally TOBI (20 min). That would require 1 hour and 40 minutes! Who has that kind of time?! In real life, it is ok to do the VEST while doing some of the breathing treatments (Albuterol and Pulmozyme). We try to wait and do TOBI all by itself, but if we’re short on time, we double up on that too, so Alex’s morning treatments end up taking 30-50 minutes, depending on whether or not we’re doing TOBI.

On a good day, Alex begins eating breakfast around 7:00-7:15 AM. With breakfast (and every meal) he takes pancreatic enzyme replacements or “enzymes.” These come in capsule form, and he takes 4 with meals and 3 with snacks. Since Alex cannot yet swallow pills, we break the capsules open and pour the “beads” in applesauce, which he eats, no problem. He has done this practically his whole life, so it’s second nature for him now. There was a time when he was 2 that he refused to eat his enzymes…but that’s another story! At breakfast, I also give his other meds: 1 Prevacid (to help reduce stomach acid and help the enzymes work better), 1 Singulair (to help with Alex’s reactive airways, which is not necessarily related to CF), ½ capful of Miralax (to help prevent intestinal blockage, which can be a problem for CF due to the malabsorption of fat & protein), and Azithromycin, (a maintenance dose of antibiotic given on Monday, Wednesday, and Friday only. Studies have shown that this drug helps keep Pseudomonas under control. No one really knows why.)

After breakfast, Alex brushes his teeth and gets dressed. With any luck, we’re all bundled up, Alex with his backpack on & lunch in hand, and out the door by 8:00 AM.

School here we come!

(Who knew I had so much to say about our crazy mornings? Look for Part 2 another day…)

5 comments:

  1. Oh my goodness, Andi--that's alot before 8am and you didn't even mention coffee! :-D
    I hope you can keep up the blog in your "spare time"-- I look forward to it!
    Lisa

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  2. Thanks Lisa! Now that I know I have "fans" (ha!), I'll try to post a little more frequently!

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  3. I can't imagine how you found time to write this blog!!! I thought my mornings were hectic!

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  4. Holy cow Andi! I think you should give yourself a break about being "organized" b/c it definitely sounds like you've got it together for everything you've got going every morning! Way to go mom! Very inspiring that you can keep all this together with another little one around as well!

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  5. Thanks girls. I realize after re-reading this that I failed to mention my husband's invaluable help. When Steve is not working or sleeping from getting off night shift at 5:00 AM, he helps with the morning routine. On those days, things go very smoothly, and I feel like I get to slow my brain down a bit, which is always nice!

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