Nov 28, 2010

Pray If You Will

If pressed I would have to describe myself as agnostic although that's a rather simplified statement of my beliefs. Though I would say that, I am oddly drawn to the Catholic faith and its cathedrals from time to time, particularly the older and grander ones like the St. James Cathedral in Seattle.  Oddly enough our home phone number is one digit off from theirs and from over the past 20 years we've received phone calls from confused people in crisis looking for a priest or sister. It's just a funny coincidence I thought I'd mention. There is something about stepping into one of these cathedrals that feels very special and sacred. If you've never done it I suggest you do, regardless of your religious persuasion. It is an amazing experience that leaves me feeling connected to the ancient and all beings and their suffering.  It's particularly moving at night when the desperate tend to come for solace. The warmth of candlelight in the majesty of that architecture is something unique and palpable. Their doors are open to people of all faiths or non-faiths, as the case may be. My children have never been to church so imagine their surprise when I took them to the cathedral in the evening after school to light candles for their sister. I find the room of the Mary Shrine to be particularly moving with the imagery of mother and child and all the candle holders shaped as nails and a symbol of suffering.  Something my baby girl has had far too much of.

You see, we are coming up on Ainsley's eyelid surgery (as well as the leg plate removal and brain MRI), now that it's Sunday night there are only 3 days until we'll be waking up and taking her in at dawn. I am so incredibly unsure about this decision that I will take guidance and/or reassurance from anywhere I can. So please if you feel inclined to, please pray for Ainsley: that she stays well between now and Thursday morning; that the occuloplastic surgeon has clarity of mind and execution of skill; that the results will be beneficial and the result to the appearance of her eyes will only be positive.

Ainsley is such a sweet girl. She's been through so much, she really deserves to have a good outcome.

Nov 26, 2010

I Am Thankful For My Family

Sorry for my late post. It's not that I wasn't thinking about you all over the Thanksgiving Holiday. The week prior to Thanksgiving I'd been thinking of writing a clever top 10 things I am thankful for, I'd even started browsing through my photos for content but it just wasn't coming together. And then the day before Thanksgiving I got the terrible news that a friend's adorable little boy from the tracheostomy forum (which is really like family) unexpectedly passed away. Angus was so well loved and will be sorely missed. Please say a prayer for Angus' family and hug your loved ones extra tight.  With this horrible news I started a post about the comparatively high mortality rate for children with tracheostomies and how thankful I am for Ainsley's continuing good health despite all she's gone through but even with a thankful spin I thought it was just too depressing for Thanksgiving Day.  And so my Thanksgiving Post has turned into a post-Thanksgiving-Post. So this year I'm going to share a picture that says it all.

In 2008 we started a new tradition (I guess by now you know I really like traditions). Evie made this beautifully colored paper mache' "thankful bowl" in class. Everyone writes what they are thankful for (anonymously) on strips of paper and puts it in the bowl and then we read the thanks out loud. I thought Adrian's said it all. Friends near and far are part of our family too.  What's most important in life is our relationships with the people we love and who love us. There are many other things I am thankful for but that one is the most important to me.

But on a lighter note I do have one to add......
I am especially thankful that I did not have to cook a turkey dinner this year!
I hope everyone had a wonderful Thanksgiving Holiday.  

Nov 24, 2010

On CPAP Hiatus

After getting Ainsley to sleep for an hour with the CPAP last week thought it through and started to question whether we really need to have her sleeping with CPAP on from now until the spring. And I didn't like that she was satting at 95% (while a decent number it is 5% lower for her) so I left a message for the Pulmonologist and got the message yesterday that we can take a break until February and they'll let us know if they want to increase the pressure or not then. I may put it on her from time to time to keep her familiar with it but I am relieved not to have to start the battle of wearing it every night....just yet.

Nov 17, 2010

CPAP Success!

Friday CPAP 30 second x 3 = 1 min 30 seconds with airflow on and cap.
Saturday 5 minutes on CPAP with cap while watching Nick Jr.
Sunday 10 minutes on CPAP with cap while watching Nick Jr.
Monday 15 minutes on CPAP with cap while watching Nick Jr.
Tuesday 25 minutes on CPAP with cap while watching Nick Jr.

CPAP with cap for 1 hour while SLEEPING!
Obstructive Sleep Apnea?......NONE

WOW! She did it. Did she like it? No. But it's one step closer to life without a trach. Her sats were a little low, so tomorrow I'll be checking with the doctor about bumping the airflow setting up to see if that brings her oxygen saturation level from 95 up to her normal of 98-100%. Also we need to decide if we are going to try to have her sleep with the CPAP on regularly for naps and/or bedtime. I feel bad about asking her to do this considering she still has a trach cannula in her airway and she only needs to use the CPAP to prepare her for using CPAP if/when she is able to have her trach removed, hopefully this spring.  I knew it would work but I also can't believe it. WOW!

Nov 13, 2010

Exciting CPAP Progress

Maybe you've been wondering what's been going on with our CPAP trials. The answer is not much. Kids don't like CPAP, that's no surprise. Heck, adults don't like CPAP either. But I quickly discovered that Ainsley really didn't like the feeling of the air coming into her nose and out her mouth. I tried it myself. It is very uncomfortable to try to breathe through your mouth with the nasal mask on.  When I closed Ainsley's mouth she tolerated it much better but since I can't hold her mouth shut while she sleeps I lobbied to get a full face mask or a chin strap instead. (In the mean time we continued to use the nasal mask for 15 seconds at a time before her naps.)

Getting the full face mask proved more difficult than expected. I thought our number one goal was for Ainsley to be successful and comfortable. However the respiratory therapist was concerned about safety and relayed those concerns to Ainsley's pulmonologist. Even saying to me "That maybe she just wasn't ready for decannulation."  Because she can't tolerate the nasal mask?! Logically none of it made any sense and I'll spare you all the details because it is complicated. Let's just say I spent a fair amount of time on the phone with the pulmonologist, his nurses and the respiratory therapist. In the end the pulmonologist could see the logic of my argument and I got what I wanted and the doctor wrote the scipt for the full face mask. FF another week and a half the respiratory therapist finally delivers the mask at our home, we try two for fit and voila' it makes a huge difference. Do I know my kid or what?!

Later that day I did our usual routine: CPAP for so many seconds with a reward of of reading a book, repeated two or three times. She seemed much calmer and was able to increase the number of seconds over the following days from 15 seconds, to 20, and then to 30 seconds at a time! We even strapped the mask on rather than just holding it, which she doesn't like. All these times she was capped so she was actually breathing through her nose and mouth with the CPAP airflow on. She was doing well! Although she wasn't liking it she wasn't panicked like she was with the nasal mask.

So I thought it was time to up the ante and really do it. At bed time last night we strapped the mask on. She'd fallen asleep on me during a movie so she wasn't too happy but she eventually calmed, the airflow was on but she would start to cry if we put the cap on. So unfortunately we didn't get to see if the CPAP actually helps the obstructive sleep apnea. But we did see that she can tolerate wearing the mask and the feeling of the air on her face (it was on). We even put her down to sleep and she was fine though she stirred a little after an hour or so, so we took it off so we could get a better night's sleep.

We decided the next step is to increase the amount of time she will breathe with the mask on while capped and we think we need to do that while she's awake instead of when she's tired. And we need to make her bed more comfortable and get her to learn to sleep on her back instead of her stomach or side. I am really hopeful. What I don't know is if the CPAP will overcome the obstruction though chances are good. But I do think that she will be able to learn to sleep with this gizmo on. I can almost taste life without a trached child and it's oh so sweet.

The full face mask.

Doing it for 30 seconds.

Her favorite part. I let her turn the machine off.

Her last night, sleeping with the mask on (no cap though) and with airflow to her face.

Nov 4, 2010

A Day To Truly Celebrate

When you have a child with medical issues you get a LOT of mail from your insurance company. I hate to bump my Halloween post with such mundane topics as Medical Insurance but I must.

Often you get to a point where you just ignore the EOB's, which is dangerous, or anything else that comes from the insurance company. Sometimes, but not often, what they send is important and GOOD. Yeah, that's what I meant to say, GOOD.

This is what I found in the mail today. Some people will say that the happiest day of their life was the day they were married, or the day their first child was born. Not for a mom with a medically intense kiddo who is steadily climbing their way to their life-time maximum benefit of 2 million dollars.  Today is the happiest day of my life! I no longer have to worry that my child will not get the medical care or therapy she needs. While it's true Ainsley receives Medicaid for secondary coverage due to her intense medical needs (ie. the trach and g-tube) that would stop if she gets her trach out. And then what? What a relief! We were getting a little too close to that 2 million dollar mark for comfort.

Sometimes I feel conflicted about the massive cost of Ainsley's life. But what people may not realize is that the doctors don't give you an estimate when they offer a life-saving surgery like a tracheostomy or a craniectomy. I had no idea. And besides it was never really our choice. The unthinkable option of ending her life at birth was never really brought up. Bio-ethics was not consulted. I am grateful that it is not my choice whether my child's life is worth 2 or more million dollars. I am grateful for medical insurance. And I am grateful for my health. And oddly, I am grateful for Ainsley's health. Despite her birth defects (I hate that term) she is actually very healthy and happy.

In addition I received a letter from insurance stating that they needed photos of her eyes to consider approval for Ainsley's eyelid surgery (duh). But when I called the eye surgeon's office they said that was already done and they just got the approval yesterday! So I left a message with the orthopedic surgeon to call me back so we can look at our schedules and coordinate with the eye surgeon. Tomorrow I happen to have an appointment with the orthopedic surgeon so perhaps we'll know then. Then we'll cross our fingers that nobody gets sick. We just finished passing around a cold and I'm still not feeling like myself. Hopefully it won't be like her other surgeries last year that were postponed multiple times due to illness. Whenever it happens, at this surgery they will:
  • remove part of the upper eyelid, place that piece in the lower lid and lift the lower corners of her lids (canthopexis)
  • remove the plates from her legs from the April hip surgery
  • a CT scan of her cerebellum (just to see, now that she's bigger the second looked different from her first and so it would be nice to know for sure what the cerebellum malformation truly is)
It's a bit to coordinate and if you can believe it the eye surgery is normally OUTPATIENT, but the plate removal requires an overnight stay. Who would think removing some plates would be more serious than cutting apart the eyes. Doing the surgeries at the same time will save an anesthesia. Same with the brain scan. Going in once instead of 3 times sure would be nice.

I am scared. And hopeful. It's been 3 long years since her second cranial reconstruction.  Sometimes I have to look back at these pictures a professional photographer friend took the day before that surgery in 2007. If I didn't have these pictures I don't know if I could remember how different her eyes looked before, or believe it. There are hundreds of photos so there is just no denying the change.


Did I say I'm nervous? I'm no longer naive enough to assume a surgery is going to have a positive cosmetic result. The eyes are delicate, and important. We've agonized over the decision but believe it's the right thing to do. My hope is that this surgery might restore her eyes to the level of ptosis she had prior to that surgery. And I hope that she can SEE (not that she can't, but you know it's a little more difficult for her) My fear is....well you can imagine. I'm excited too, in a sick to my stomach way.  I just wish Steve was home to celebrate. He's back to crazy work hours to meet his game deadlines. Busy times ahead.

Nov 2, 2010

Halloween 2010

PUMPKIN CARVING: Ainsley's hands in the goo, the kids impressed with Steve's massive scary faced pumpkin, Ainsley helping me to carve "Casper the Ghost" and my favorite "The Scream" inspired by the painting by Edvard Munch. That could be me on any given day.

I love looking at the pumpkins all lit up on the porch. Left to Right: Evie's, mine, Steve's, mine, Adrian's (notice it has two faces, there was no convincing him it should be any other way).

It's not Halloween without candy corn. I'm starting to feel sick from eating so much of it. What is it about candy corn that we like?! I don't know but I eat it anyway.

This year's costume theme: The Lion the Witch and the Wardrobe. Evie is Lucy, Adrian is Peter and Ainsley is Aslan the lion. I made Evie the "juice of the fireflower bottle".  I have to brag a little. Check this out...

A $2 purse from the Goodwill and a braided belt for $1.50 and a button and gold thread, a found bottle and a few hours later.......this is what you have.....

...this, a replica of "the juice of the fireflower". And a happy kid. And that's as close as I'll ever get to making my own costumes. Evie loved it SO so much. It was worth it. And it completed the costume. 

No mall trick-or-treating for us! We always set out around the hood. It was a perfect night. Dry, not too cold, no wind and no rain until much later in the night.....

...after the happy trick-or-treaters were home. We had 29 trick-or-treaters this year. If you count Evie and Adrian when they came home (yes I gave them each a piece of candy) I guess that would be 31.

We did our usual decorations with the crows, owl, bats, spider webs and bugs. We added some new pumpkin lights at the street to try to draw in the trick-or-treaters so they would see we were home and come up the stairs.

We added some ghost lights and better gravestones for the graveyard this year. The extra lights made it a little safer for the kids to get up and down in their costumes in the dark. Steve plays the spooky music outside to try to make it really fun for the kids who come to our house. Scary but not too scary. No guts or blood.

We (I) made our traditional pumpkin chicken alphabet soup. I keep begging to retire this tradition but the kids love it and they beg me to do it every year. I even roasted the pumpkin seeds. Yum!

Ainsley was very clear that she wanted to be done having her picture taken and go back inside with the kids to view their loot. The Aslan costume was SO cute on her and she really enjoyed pretending to be a lion which was a little surprising and very cool to see, her on all fours lifting her head back to "roar".

I bought this cute Calico Critters cat in a witch costume for her since she can't really eat the candy. She was very happy with it. Though she has enjoyed putting the candy into her car and pushing it around the house.

Evie had a cold and wasn't feeling her best but I think they still had a great night. Their favorite part, looking at all the candy spoils.

We ended the night with some Halloween reading. I just sat there on the couch drinking a Blue Moon, more than a little exhausted (did I mention we are considering buying a new house) just watching them and how beautiful they are. What a lucky mama I am to have 3 such wonderful kids. It was a really wonderful Halloween.