Tuesday, October 8, 2013

I feel like crying

One of the most challenging things about having Squeaker be so sick is I can't be the mom I wanted to be. Yes, this is true of almost every mother because kids come with their own challenges and you have to adapt. It's also true that I am still the mother I wanted to be in many ways. I am kind, loving, fairly patient, interactive, and I truly enjoy my child. Which in the grand scheme of things are more important than being that mom who lets their 3 year old use a bottle, has to ignore the screaming to get something done, or who uses the TV to keep her sanity. But today one thing hit a little closer to home, food. Mostly the need for kids to have healthy food.

I saw 4 posts today on Facebook about healthy food for kids. Three of them just made me sigh and go, "If only I could."  Then one comment almost put me in tears. It was not made maliciously nor was it even made toward me, and I love the person dearly who wrote it. Today was just an pretty rough day this hit me hard. It didn't help that I was feeding Squeaker her second burger patty of the day. 

"...Nutrition can fix almost anything. Food sensitivity or parasites are a great starting place."


This is the mentality I was raised with. Raising a family of athletes my mom worked hard to make sure we were getting the right amount of carbs, protein, fruits, and veggies in our diet. She taught us about carb loading the day of a race. That during winter and off seasons our portions needed to be less so we could stay healthy. Mom would have loved for use to have fresh oranges everyday during the cold Maine winters but it just wasn't possible so she made sure we took our vitamins. Of course we still got sick and from time to time would need antibiotics, a daily yogurt was added to our diet to help keep good bacteria in our system. Good food can do great things, I know that and I wanted to be a healthy food mom.

We started out that way too. I pumped milk when nursing wasn't an option, I made baby food from scratch, and Squeaker didn't have sweets until about 18 months old. The reason we started introducing sweets was because they tend to be high calories in little spaces. And we needed those calories for weight gain. We still do.

So yes I am here whining about the fact that Squeaker is under doctors orders to eat junk food. She

has free reign over chips, crackers, cheese, ice cream, cake, frosting, hot dogs all those things most kids have to keep out or to a minimum. Before you start to freak out we do feed Squeaker healthy food. She actually loves it. Fruits are her favorite, follow by pasta with sauce. She will eat mostly anything we eat. All in all she has a healthy relationship with food, and enjoys lots of flavors and textures. But we still struggle with weight. All that junk food makes a difference, and every ounce counts.

Now you maybe thinking that if we dumped the junk food and gave Squeaker immune boosting foods it would make her healthier. Boy oh boy do I wish it was that easy. Since Squeaker's immune system doesn't know what to do you can give it good or bad stuff and it will do the same thing. Her immune system will just go along not doing much. Yes it is frustrating.

Here I am once again admitting I'm not the mom I desired to be. It's hard and yes it makes me want to cry. Then I look at my sweet sleeping Squeaker (it took 2 hours for her to pass out tonight) and remember I AM the mom I need to be.

Sunday, October 6, 2013

Say "Thank You" Tonight

It's fall. The weather is cooling off the bugs are dying, the leaves are turning colors and of course Squeaker is sick. We are starting fall out with a bit of bronchitis. I call it a bit because it was caught fairly early. Squeaker had just been a little wheezy and acting "off" when we had a check up with the pulmonologist. They listened to her and heard some crackling in her lower right lung.  Yeah... great way to start fall. Oh and she has lost a pound too, 24lbs again :(

It is now 10 days into a 14 day antibiotic and 3 days into a 5 day oral steroid. We are still struggling with wheezing, feeling icky, coughing, and sleeping. This is on top of a prophylactic antibiotic, inhaled steroids, Advil, and albuterol. Squeaker is just taking a long time to get over this. This could be a very long winter.

In related news. More immunology test results came back. Well it's not good news. Squeaker does not make enough antibodies to support her system. For example they gave Squeaker a pneumonia vaccine to see how she would react. Before the vaccine Squeaker was considered "safe" from 3 of 17 strands of pneumonia and after the vaccine she was safe from 4 of 17 strands. Normally after 2 vaccines you are fully protected from all 17 strands.

These results combined with the last set make it clear that more aggressive therapy is needed. Once again they are going to try and get Squeaker approved for infusion therapy. The hope is that after a few months not only will Squeaker not be sick but the therapy will teach Squeaker's immune system how to work. Her system is there is just doesn't work right. We just have to get her approved by insurance.

As frustrating as it is to get Squeaker approve for infusion therapy I get why insurance doesn't want to pay. That stuff is expensive! Per gram IVIg is twice the cost of gold, and the bigger Squeaker gets the more grams she needs.

Why is it so expensive? Well immu-globulin, what makes IVIg, is a very small part of our blood. It takes 8 pints of blood to make 12 grams of IVIg. At her current weight Squeaker needs 23 grams of IVIg every month at a cost of $2070. To make those 23 grams it takes 16 pints of blood, or 8 pints of plasma every month.

Want to figure out what you would need?
Take your weight in pounds     150 lbs
Turn it into Kilos (times .45)    67.5 kilo
Times 2 for the grams needed  135 gram
Divide by 12                             11.25
Times 8 for blood donors          90 blood pints
Times 4 for plasma donors       45 plasma pints
Price per gram                           $46
Total price for medicine            $12,420

Crazy huh? One more thing to add to the crazy. A healthy adult can only donate 6 pints of blood a year. Now a healthy adult can give up to 100 pints of plasma a year.

The point of saying all this is to let the world know. I'm not trying to throw a pity party or say woe is me. Each and everyday I am thankful for my Squeaker and what health she does have. We still get to do a lot of things, and have a lot of fun. But tonight I encourage everyone to make sure you say "Thank You" for your children and what health they have. For the joy and fun they bring into your life. Be thankful for it all.

Then tomorrow wake up and find a place where you can donate blood or plasma. Get some friends together and go donate. There are many people in the world who use it. Hopefully soon our little Squeaker will be one of them.  For the seven month trial they want Squeaker to do she will use up to 105 pints of blood and/or up to 53 pints of plasma. So get donating!