Another Trip to the ER

Crewe has had a bug since Friday night. Vomiting, fever, lack of appetite, occasional cough, etc. Calahan had the same bug earlier in the week and the pediatrician told us it was just a virus and to let it take it's course. We assumed it was the same with Crewe and were just trying to ride it out.

We should know by now that even the simplest cold becomes complicated with a trach. And the trach complicated things again. Crewe's cough started to get worse. We gave him a couple of breathing treatments yesterday, but they didn't seem to help for too long. And by last night he was coughing pure blood out of his trach. It was so bad that it soaked the top of his PJs.

So...at midnight I took Crewe to the extremely busy ER at Phoenix Children's. It was so busy that they had to take his vitals in the waiting room. (PCH has a big problem with those on state-sponsored insurance going to the ER for routine matters because the ER doesn't have a co-pay like the regular doctor does, but I digress). After several hours, tests, and x-rays, we learned that the poor little guy has pneumonia in his right lung AND the most recent strain of the flu. The attending doctor gave Crewe an antibiotic through his IV and asked us to continue one at home. The antibiotic should have a big impact within the first 24 hours so we are hoping for a much better day tomorrow.

You have to get to know this guy...

Meet Daniel Hannon, a British member of the European Parliament. It's ironic that we have to look to Europe to get some common sense about the economic situation we are in. Yes, Europe. Frightening. I hope the politicians in Washington are taking note.

Moon Obsession

How do you explain the phases of the moon to a 22 month old?

Calahan's interest in the moon is not fading. He has been disturbed this last week or so when the moon has been in the new moon phase and not visible. Every night he asks to go out and see the moon. If he doesn't see it, he shrugs his shoulders, sighs, and gets this really disappointed look on his face. The obsession doesn't end there. Without fail, if he hasn't seen the moon the night before, he asks about it first thing the next morning and insists that we go back outside to see if it has miraculously appeared. Fortunately, we were able to see a sliver of the moon tonight and Cal is resting peacefully!

More Fun Visitors

When spring hits Arizona, it usually brings sun-starved family. (We love spring for this reason!) Earlier this week we got to see Sherrie, Mindy and Marne. So fun! We loved catching up and feel privileged that we actually got to see Marne this time... shh... don't tell the Glousers!

Mindy was kind enough to give Calahan a much overdue haircut. She has got the touch. Seriously, how does she do it? Calahan doesn't let either me or Chris get near him with the clippers and it takes both of us to hold him down at Great Clips. Cal and Mindy must have really bonded when she gave him his first haircut last year.

Sounding Off

Crewe has made tremendous progress since he started seeing Kelly, the speech pathologist. The most exciting progress happened this week when he started making sounds! We are hearing things like "aaaaaa" and "ooooo." Music to our ears. Crewe is just as excited as we are to hear his noises and smiles hugely every time he makes a sound. It's as if he's saying "that came from me!"

The trach gives these noises a mechanical sound. Crewe's ENT is pleased with his progress is considering giving him a speaking valve to place on his trach. (We have to make sure that his oxygen levels don't drop with the valve). The valve will make it easier for him to make sounds since it will force him to exhale out of his mouth instead of through the trach.

We've captured some of these sounds on video and I'll post some video soon.

Hanging with the Holmes'

The highlight of our weekend was getting to spend some time with Doug, Erin, and Blake, who were in town for Blake's hockey tournament (Go Eagles!). We enjoyed a yummy lunch at Nello's and ice cream at The Sugar Bowl, but most of all we loved catching up. Doug, thanks for sharing some of your thoughts on America and the current political situation (you should run for office)!

Cal and Doug checking out the horse and carriage in Old Town Scottsdale

Erin and Doug getting some treasured Crewe time. Crewe loved meeting Aunt Erin and Uncle Doug and didn't want to take his eyes off of them.

At the Sugar Bowl

Insurance!

Today we finally got the call we've been waiting for... an insurance company saying they will cover Crewe! What a relief. A complete and total relief.

With a little guy who has already incurred over $700k in medical bills in his short life, we have really been sweating it. For the past 18 months our family has been covered on the Time Warner group policy through COBRA. With 18 months being the maximum time allowed on COBRA and Chris being self-employed, we've been shopping for new policies for our family. The companies we applied to were willing to cover everyone EXCEPT for Crewe (the person for whom coverage is most important). 

The health insurance industry in our country is BROKEN. Getting insurance for a 9 month old baby who has been covered his whole life just should not be that hard, but it is VERY hard. Very hard, that is, if you make more than $2,000 per month. The only reason we were able to get Crewe a policy was because of  the Arizona HIPPA law. This law requires insurance companies to offer a policy to a person who has had continuous coverage on a GROUP policy AND who has exhausted all 18 months of COBRA (along with some other stipulations). 

For obvious reasons, companies do not advertise these policies and brokers don't sell them since they don't make any commissions on them. The only way to secure one of these policies to find out the law and then fight for your child. There are SO many hoops the have to be jumped through... and you have to jump through them at very specific times and with the appropriate documentation. Insurance companies look for any reason not to return your phone calls or to deny your application. 

We are just so thankful to have finally gotten through this process and to have insurance for our little guy. It's expensive and comes with a large deductible, but we're so thankful to have it! Finally.

Oh the Weather Outside is Delightful

February and March are two of my most favorite months in Arizona. We've been enjoying some beautiful weather the last few weeks. Calahan especially has loved getting outside. Here are a few shots of our "winter" fun.

Crewe taking it easy with Aunt Tara. They have a special 

bond that started when Tara stayed the nights with 

him while he was in the hospital last July.

Silly sprays are so FUN...

Still fun after 10 minutes...

Making friends at the park... he's got a thing for the ladies!

Playing hard-to-get...

Checking out the "wah-wah" as he calls it.

Crewe's eyes keep getting bluer.

What do Two "Doras" and Pepperoni Make?

Calahan's breakfast, of course! 

He picked it out this meal all by himself (can you tell?). It almost made my stomach turn this week to see Cal alternate between bites of strawberry vanilla yogurt (affectionally referred to as "Dora" due to the Yoplait branding) and Hormel pepperoni. That's our boy!

Breakthrough

At this time a week ago Crewe's specialists were discussing the option of surgery. The MRI showed that while there are still some cysts that can be treated by sclerotherapy, the treatments wouldn't solve the real problems of breathing and eating. Our stomaches were sick just thinking about surgery, the recovery, the scar tissue, and the inevitable re-growth. We were calmed a little bit by Crewe's ENT who recommended that Crewe go on a steroid and antibiotic first to see if it would go down that way.

Now, a week later we are in a much better place and it has nothing to do with steroids or antibiotics. It has everything to do with a certain speech pathologist that we met for the first time the day after Crewe's MRI. Kelly has an 11 month waiting list, but somehow got Crewe in for a consultation regarding his eating problems. While I was describing Crewe's issues to her, she mentioned that she is trained in lymphatic massage and asked if she could try some techniques on Crewe. "Seriously? Can you start right now, PLEASE?" 

The long story made short is that within 24 hours of the first massage, Crewe's swelling significantly decreased, the food vomiting stopped, and his trach secretions went WAY down. The massages have been so successful so far that I haven't even filled Crewe's prescriptions for the steroids and antibiotics. 

Is it a coincidence that we happened to get into a speech pathologist who has an 11 month waiting list and who also is trained in lymphatic massage the week that Crewe's specialists were conferencing about emergency surgery? Not a chance. Kelly is a direct answer to prayer.

A "Growing" Problem

One of the signature behaviors of cystic hygroma is that it can grow at any time, at almost any speed, and without any warning. We learned that lesson when Crewe was five days old and again when he turned six weeks old. Now, at almost nine months old, we are reminded again of how quickly things can grow.

Over the past ten days, Crewe's upper lip and right cheek have puffed up significantly. Crewe's neck also seems bigger as it now covers his trach tube when he sits. The "bleebs" in his mouth are also bigger and have turned white. New ones are appearing almost daily. The increases in swelling has made breathing and eating more difficult. Solids in particular are a challenge and often come back up when he coughs in an effort to breathe.

While Crewe was at PCH last week for a regularly scheduled ultrasound, I asked the interventional radiologists to stop by to take a look. They could not believe how much his face had grown in just six weeks and immediately scheduled him for an MRI to see if there were areas they could reach through sclerotherapy to help alleviate some of his breathing and swallowing issues.

The MRI was today and we are hoping that the scan will reveal some clues. The doctors are going to conference after they can read the scan and recommend a plan.