August 21, 2011

Balancing Act

As this week comes to a close I feel its necessary to balance out my emotions. Let me explain a little. It's been an eventful week around here and I think if I wanted to I could probably make a case that it has been a bad week. I'd say there have been enough "bad" or disappointing moments to support that claim. But on the other hand there have also been some really good and inspiring moments. These are the moments that I want to stand out about my week. These are the moments that won't allow me to call this a bad week.

Here's a quick run down of some of this bigger things that happened this week:

On Monday, Annabelle's g-tube button popped out. Not a great moment, or my best moment. Click HERE if you haven't read that post yet :-). I beat myself up pretty bad about not reacting as I would have liked in the situation. The great news is that I wasn't alone when it happened - Branden was there and he acted properly. Now I feel totally prepared to handle it if God forbid it happens again.

On Tuesday, We got the results from Annabelle's stomach emptying test that she had last week. This was the last of two tests performed to help us determine why our sweet girl doesn't eat. The first test was the Acid Reflux test. Those results came back negative. The results however for the stomach emptying test came back positive. So the official diagnosis is Gastroparesis or Delayed Gastric Emptying. Click HERE if you would like to read more about this condition.

Here's my sweet girl "reading" before they called her in for the test last week. Annabelle LOVES books and animals.

I'll be honest, I had mixed emotions when I got the results. I was sort of happy to know there was a real reason she won't eat. Don't get me wrong, I don't want Annabelle to have any additional medical conditions or have a need for additional medicine but at the same time it has been SO frustrating trying to get our sweet girl to eat. Now we know why. With the delayed gastric emptying her food moves through her digestive tract at a much slower rate that you and I. The assumption is that she always feels full, hence the reason she take 2-4 bites of something then says done with a cute little smile on her face. I naively was hoping it was a simple fix. Well, so far it hasn't been very simple. The Dr. prescribed Erythromycin which seemed simple enough but when I went to pick it up the pharmacy wanted to charge me $50. Okay, so if this was a one time prescription and if Annabelle didn't already have almost $100 each month in prescriptions than this wouldn't be that big of a deal. But that's not the case. This is a medicine she will need every month for a very long time and as I mentioned we are already paying $95 (to be exact) each month to cover her 3 prescriptions, daily probiotic and her iron supplement. We can not afford another $50 each month - that is another $600 per year! So this would be the "not so great" part of the story. I proceeded to spend Wednesday and Thursday fighting with the insurance company to consider lowering the monthly co-payment. I felt that I had a very good claim and wanted to file an appeal. Unfortunately, my "customer service rep" at the insurance company doesn't see it the way I do. The insurance company is NOT willing to work with me. They do not see that if we can get her eating we both won't be paying the hundreds of dollars each month for her feeding tube supplies. I'll admit they beat me down pretty good this week. They got me to raise my voice and to shed a few tears. But I'm done with that though - we all know that insurance companies are business and could care less about me and my family. They don't see Annabelle as anything more than a very expensive client.

So the GOOD part of this situation (I'm sure you were wondering when I was going to get to that), the part of this week I want to focus is not the greedy insurance company but on are the kind people that ARE trying to help me. The kindhearted nurse Vicki at the GI Dr.'s office and Charlie the caring pharmacist at Columbia Pharmacy. They are both going above and beyond to try and find a comparable drug that my insurance will cover at at $10 or $20 co-payment. These are people that see how hard we are working to take care of our family. When I thanked the nurse on Friday for all she was doing for us she told me that when her kids were little they both had high medical costs and she felt that no one ever went that extra step to help her so she was happy to help in any way that she could. She truly touched my heart.

On Wednesday, I was contacted by a lady via e-mail who stated that she and her husband were considering adopting an 8-day baby boy with Spina Bifida. I was honored that she reached out and I immediately offered to connect by telephone. We spoke for over 20 minutes and I was as honest and direct as I could be about life with Annabelle. The reality is Annabelle is wonderful - she's smart, happy and an absolute little love. Life is harder yes, but she is SO very worth it. I was honest about cathing and therapies. We talked about the g-tube although those aren't typical for most kids with Spina Bifida. She was a very nice woman and I enjoyed our conversation. I hung up not really sure if I helped her at all but prayed that her heart would guide her properly. I figured she had probably pretty much made up her mind before we spoke but she didn't really let on. They have other biological and adoptive children but none with SB.

I'm happy to say there is nothing bad about this story! I received an e-mail from the woman on Thursday morning saying that she and her husband had decided to move forward with being presented to the birth mom. She asked that I pray for them and thanked me for all the info I had shared the day prior. On Friday I got another e-mail stating "he is ours!!! Birth mom said "I think they are just about perfect!". :). I cried!" It was such a GREAT e-mail to get. My heart was overflowing with happiness to think I played a small role in helping a sweet little boy find his forever family. I can't wait to hear his name and see his sweet picture on Monday after they sign the papers. I was once again inspired by good, kindhearted people.

I've realized that if financial troubles are the worst that I had to deal with this week than we are doing pretty good. So many families are dealing with much more than we are. Sadly, it felt like a day didn't go by this week where I didn't hear or read about the loss of a baby or a young adult being diagnosed with cancer or some other very scary disease. These are devastating things for families to go through. We are blessed, very blessed and I will make sure to work hard to not forget that in the moments that seem a bit overwhelming in the moment.

Having these three little loves to snuggle each day makes everything better

There's no doubt I can handle anything as long as I have the love of my family.

August 15, 2011

The calm after the craziness

We had some craziness tonight I tell ya. Annabelle's g-tube button came out tonight! Yep, you read it right - the whole stinking button popped out. I am thanking the Lord above that it happened when Branden was home because I freaked out and was no help at all during the situation. I panicked and started crying but Branden was as calm as could be. Amazingly, he remembered everything they taught us almost 4 months ago at the hospital. Thankfully, our "in case it came out kit" was readily accessible and Branden jumped right into action. He had to insert a Foley catheter the open hole (where the g-tube button usually is), inflate the balloon which holds it in place with 5 ml of sterile water and then clamp it with medical tape (the directions say to use a rubber band, but you can't use rubber or latex around kids with SB due to allergies).

I quickly called the GI Dr. to get guidance and next steps. I had Branden talk with him so he could tell him exactly what he did for Annabelle. It was so proud that the Dr. said that Branden had did everything perfectly. I was shocked though when he said that the ER would not help us to put in a new button. WHAT??? Apparently, in the medical world this isn't that big of a deal and clearly not considered an emergency. He said that he would order us a new button because the balloon on hers had burst and was no longer usable and we could just come in tomorrow to have it replaced. At the time I was totally unclear how we would continue with her tube feedings and administering her medicines or even manage with this huge Foley catheter sticking out her belly. But now I know that it can all be done temporarily though this tube. We were able to give her Pediasure and her bedtime medicines through the tube before putting her to bed. The Foley is not as secure as her button and it is leaking a little bit but it will do until tomorrow.

Sadly, I was really shook up after everything was handled and calm again. Branden seemed pleased with himself (as he should be). Annabelle seemed fine - not in any pain and happy to be with her Dad. The boys were happy their sister was better now. The kids were pretty scared - mostly because of my reaction to the situation. Jack asked if she was going to die if she didn't get a new button tonight :-( Poor kid, I hate that his little heart had to even wonder such a horrible thing. I on the other hand felt horrible and totally unprepared to handle such a situation. I can't even imagine what I would have done if this had happened even 20 minutes earlier. Branden had literally just got home with this happened. We can assume (and hope) that I would have handled it since I would have had no other choice but I don't know. I was scared, really, really scared. I am still scared that it hasn't been replaced and I will have to "deal with it" until the Dr. sees her tomorrow. It's also no guarantee that he was able to get a button from the pharmacy. Unfortunately, they don't stock these things and we may have to wait until one arrives. The Dr. said if he is unable to get her one tomorrow he will insert a traditional G-tube (boo - this is an actual tube that will stick out of her belly) and we will have to wait until the new button comes in and then he will switch it out. I know I am just complaining now and should just be grateful we didn't have a bigger issue on our hands tonight.

I am so, so glad my wonderful husband showed amazing grace under pressure tonight. I pray that if it ever happens again I will be able to channel his calmness and help Annabelle half as well as he did.

Because I think every post deserves at least one picture. Here's a picture of Annabelle with her Daddy from yesterday. If you couldn't tell, she adores him. I think he's pretty great too!