Nov 27, 2009

Turkey Day One Day Late

Normally one of my favorite things about the holidays is taking pictures. But I was so busy cooking this year that I only took a few and this is about the best of them, but you can't see half of us. Oh well. Half way through dinner I kept hearing a beeping that was driving me crazy. It turned out Adrian was playing my brother's old chess video-game under the table, and now I can see that you can see him doing it in this picture. If only I'd noticed at the time. Pretty funny.

This is Steve's side of the family plus us, 15 in all. To all my family who I was too busy to call because I was cooking like a crazy lady all day: I'm sorry! And HAPPY THANKSGIVING! I wish I had a house big enough to invite everyone.

Ainsley had a great time and we made her a plate of food to play with while she sat at the table with us. She's getting pretty fearless and was kneeling on the chair. Yikes!

I was so busy cooking I didn't have time to make her blenderized food and she had canned for Thanksgiving. Booooo! But today I was able to spend the time to give her a proper Thanksgiving meal....just one day late. I am such a fan of a blenderized diet that I wanted to show you all that you can truly puree ANYTHING for the G-tube if you have a high speed blender.

Our Thanksgiving meal?:

turkey (of course)
mashed potatoes
candied sweet potatoes
brussel sprouts with bacon
crescent rolls
cranberry sauce
and....pumpkin pie on top

plus some of the usual ingredients: orange juice, milk, strawberry kefir, apple sauce, liquid vitamins and cod liver oil

About a minute later.

Thanksgiving meal in a bottle.

I have to admit it tastes strongly of dark turkey meat with a hint of pumpkin pie, and I'm grateful that I get to eat my Thanksgiving dinner the old fashioned way, one food at a time.

I hope everyone had a great Thanksgiving Day!

Nov 26, 2009

Happy Thanksgiving!

I wish I was writing some thoughtful words about what I'm thankful for, there are plenty of things, but no I am prepping vegetables and cleaning my house because I'm CRAZY....and offered to host Thanksgiving this year. Now before you go reporting me for working my kids into the night, let me say that they wanted to help. I gave them this job because after helping prep the brussel sprouts they were begging to help with something else, my cabinets were sorely in need of cleaning and I figured maybe they'd clean one and then go off to bed. But they thought it was fun!?! That word actually came out of their mouths. We had to force Evie to go to bed, she kept saying she wanted to do "just one more". Steve suggested that since Evie will do ANYTHING to avoid going to bed we need to have her clean the cabinets at bedtime more often. Hmmmm. Not a bad idea. Kidding. But the cutest thing was that Ainsley saw Evie and Adrian cleaning and she crawled over to that towel drawer (remember my last post) and got herself a rag to help clean! Can you believe that?! Anyway, I couldn't wait to share that one. I'm pretty impressed with how she's putting things together these days. I hope everyone has a really wonderful Thanksgiving! Thanks for reading and caring about Miss A.

Nov 20, 2009

My Towel Drawer?!

Did I mention that Ainsley turned three? And that now she is starting to act three?!

At least it wasn't the pasta and rice drawer above it. UH OH! I'd better get some drawer locks. Ha, ha.

Nov 18, 2009

Rascally Girl

Did I mention that Ainsley turned three? And now she is starting to act 3?! On Saturdays I sit in bed and have coffee and Ainsley sits with me looking at books but she often is done long before I am and wants to go join her brother and sister downstairs. Saturday she decided just to get down all by herself. She turned herself around and got into position.

Pushed herself off bit by bit.
Hung on for dear life as she hoped her legs would reach the floor but unfortunately grabbed the pillow, which worked until she got to a certain point and it just fell with her. (These photos are a re-enactment.)
You should have seen her surprise as her bum hit the floor. She started to cry. But it was a mighty grand first attempt so I cheered for her, so then she smiled as she flipped around and crawled toward the door.

Nov 13, 2009

She's Fine of Course.

OK, she was actually pretty sick. The day of the surgery her temp stayed in the 99.6-100.00 range. And the poos. Eeecccchk! But by Friday she was back to her happy self. Friday night we always have movie night and she happily played in the "fort" that Evie made out of blankets and pillows in the corner. She was actually rambunctious. Her secretions got a little yellow but it turned out her air compressor wasn't working properly. We got that exchanged and it never did turn into anything respiratory. But still she might not have done very well under anesthesia. So it really was just a stomach bug but it was the right call. Just bad luck and bad timing.

Nov 12, 2009

Surgery Cancelled

Why oh why can things never go as planned?! After Ainsley's surgery (tonsillectomy/adenoidectomy/laryngoscopy/chest and head CT/possible vocal cord lasering) was cancelled in September I was very much anticipating the eventual arrival of today's surgery. I would be lying if I said I wasn't counting down the days like a kid before Christmas. I so wanted this surgery to happen this time for all of the reasons I've written about in the past. I kept Ainsley home from school and didn't take her anywhere this past week. Things were looking good. Even the lingering snotty nose from the H1N1 a few weeks prior was completely gone. She was 100% healthy. Hooray!

Then at the end of her shift on Tuesday her nurse reported a temperature of 99, after she got up from her nap. I thought perhaps it was a fluke. The temp returned to normal later so I thought we were out of the woods. But then last night after her nap it spiked at 101.7 with an elevated heart rate. Still the optimist in me thought perhaps it was just the ear infection I knew she'd had a few weeks prior flaring up again and that the fever might break. It was after hours and too late to call and cancel anyway so I put her to bed hoping the fever would break over night. I hardly slept all night, jumping up to suction every time there was an odd sound and every time the oximeter would false alarm when she'd move the foot with the probe on it. I'd watch her heart rate and O2 level, feeling her head hoping there was a change. We got her up at 6:00am to give the last allowable feeding, just in case, and then put her back to bed. We got the kids off to school. Steve and I talked it over. Even after having a quick bath she still had a temp of 99.6. I called the hospital and spoke personally with both the anesthesiologist and surgeon and gave them all the details. They both felt it was best to reschedule because of the recent fever and the potential that she had something respiratory brewing that the anesthesia would make worse. Since the surgery isn't life threatening they wouldn't take the risk. "That's what you get for being honest," he says. Crap! Why do I always feel compelled to tell the truth?! Is it to late to take it back and pretend I didn't tell you? That's what I was thinking in my head.

Well what-da-ya-know 20 minutes after I made the call she has a really gross stinky poop. Aha! Now at least I know what was going on. Perhaps they'd agree to do the surgery since it isn't a respiratory issue?! Okay, I know that's denial speaking in my head. It's too late and I have to concede defeat. Damn! How did this happen? Evie had diarrhea a few days prior. She hadn't told me and I found the evidence when doing laundry. But at that point Ainsley had already been exposed and at the time I didn't know if it was food related. It is incredibly frustrating to try so hard to keep your child from getting sick to have it fall apart at the last minute. And of course I feel bad that the surgeon has an empty spot in his schedule. Now I also have a low grade temp and feel a little queasy. Great!

So later in the morning I call to reschedule and the available dates are 12/24 (Ha!) or January (when she is supposed to have her brow surgery.) Now she doesn't have the CT she needs for the brow surgery so she'll have to have an additional anesthesia. Crap! And I'll either have to reschedule the brow surgery or wait for the tonsillectomy which will push out her hip surgery and maybe even the eye surgery. This is why I was being so careful to keep her well. Next time I guess we'll all have to wear masks the entire week before the surgery date?! Or truly quarantine the house. I'm being sarcastic, or am I?!

I went to the kitchen to make myself a cup of tea. And it seemed quiet. Too quiet. Ainsley had curled up in a ball and fallen asleep on the living room floor. I guess she really wasn't feeling that great and it is good I didn't try to sneak her through the system using a secret and forbidden dose of Tylenol as I was sorely tempted to do. I wish I could say doing the right thing felt good. Now she's napping and I'm pretty damn sure that when she wakes up her temperature will be normal and she'll be her chipper happy self. Because that's would be the perfect finish to this day.

Nov 4, 2009

H1N1 - We had it!

We had it.

Here's what the CDC says about H1N1(formerly known as swine flu):
How do I know if I have the flu?

You may have the flu if you have some or all of these symptoms:
fever *
sore throat
runny or stuffy nose
body aches
sometimes diarrhea and vomiting

*It’s important to note that not everyone with flu will have a fever.

It also says this:
How will I know what strain of flu I have or if it’s 2009 H1N1 (formerly known as Swine Flu)?

You may not be able to find out definitively what flu virus you have. Currently available rapid influenza diagnostic tests cannot distinguish between 2009 H1N1 and seasonal influenza A viruses. Most people with flu symptoms this season will not require testing for 2009 H1N1 because the test results usually do not change how you are treated. As of September 2009, more than 99% of circulating influenza viruses in the United States are 2009 H1N1. Therefore, at this time, if your health care provider determines that you have the flu, you most likely have 2009 H1N1. As the season progresses, different influenza viruses may circulate and updated national information on circulating influenza viruses is available in the FluView U.S. Weekly Influenza Surveillance Report.

There are laboratory tests available that can tell the difference between 2009 H1N1 and other strains of flu, but these can take one to several days to provide results and this season, CDC has recommended that this testing be focused on 1) people who are hospitalized with suspected flu; 2) people such as pregnant women or people with weakened immune systems, for whom a diagnosis of flu will help their doctor make decisions about their care.

Ainsley started at her new school on the 19th. A few days into the week some kids that had been absent came back even though they were still obviously sick. (One benefit of having nurses go to school with your child, you get a full report.) That Saturday while I was at my sister's bridal shower Ainsley heart rate became elevated to the 170 range (she's always monitored while she sleeps). A few hours later she developed a 102 fever but the heart rate didn't come down on Tylenol even though the fever did. Then she had a constant cough while sleeping that kept us all awake most of the nights for a couple days (this is fairly typical for her when she is sick because she's coughing up secretions through a tiny tube). I figured it was an ordinary cold virus until I read more about H1N1 on the CDC website. Because children with tracheostomies and lung conditions are at higher risk for complications we were very afraid of her getting H1N1 and there has been much discussion about it on the trach forum. Unfortunately the vaccine was not available. Even if we could get it I knew she wouldn't be protected until the second dose was received 4 weeks later. This presented a dilemma in whether or not to send her to school where she would be at high risk of contracting it. Little did I know she already had.

Fortunately her pediatrician agreed to test her. The rapid-test Thursday was negative so I thought perhaps I was wrong. They gave Evie and Adrian the first dose of the mist H1N1 vaccine. I think her doctor thought it was going to be negative. But yesterday we got the call that the laboratory test came back positive. Adrian and Steve also got sick last week and after having had a cold for weeks I had a flare up of symptoms. Evie is the only one who I'm not as sure about but she was certainly exposed and likely had a very mild version. Luckily we were all feeling better by Halloween and it wasn't too bad.

It sounds weird but we are hugely relieved because now I don't have to fear it all winter and spring. I don't have to fight to get the vaccine that is in short supply and Ainsley can go back to school after her surgery next week.

I now believe that this virus is far more wide spread than people realize. That most people who are sick have it and that most of us will get it eventually. I only hope that it turns out to be as mild for everyone else as it was for us.