Without a fight

I'm back from a hiatus of trying to get our lives back in order (hasn't exactly happened, but that's because I have no control over my life, only God does!). I hope you will pardon the silence and know that I've wanted to share, but in the midst of all the chaos and confusion, words are hard to come by.

Growing up, my family was always really nice. We're a "make no waves" kind of family, that strives for peace and every one getting along. My husband comes from a family of Irish and Italians and they definitely aren't afraid to "make waves." :) If something's wrong, you will know about it, and that's just how it is. I think it's interesting that God brought us together -not just Shaun and I, but our families, too :)

Anyways, this last month to six weeks has been about FIGHTING. Nothing has been done without a fight.

I have shyed away from talking about this, but many of you know now anyways. In May, we discovered that one of our favorite, most loyal and dedicated nurses had been stealing money from Shaun's parents. We live in their home while they're in Africa so most of their stuff is still here and definitely still their money! Shaun pays their bills for them and all that is kept in a desk here in the home. Well, as it turns out, "Nurse" was in financial trouble and stole not only Shaun's parents credit card but also their checking account number and paid some of her bills with them. Every day she worked here in April and the beginning of May, she would go across the street and withdraw almost $400 using cash advance on the credit card. Every day! It makes me sick just writing it again. I haven't been able to talk about it but finally feel ready. I can't even begin to tell you the shock and betrayal we felt at this "Nurse" doing this to us. To make matter worse, we discovered the card had been stolen the day we were leaving for Florida, and she still went with us on vacation!!!!! Even after we asked both nurses to please tell us if they were the ones who had taken the card.

I had my definite suspicions it was this "Nurse" because she called on her way over here that Friday and when I told her that the card was stolen, she was silent and then asked, "Are we still going to Florida?" Who responds that way?! Someone who's guilty. While on vacation this "Nurse" lavished gifts on us and went out of her way to be extra nice and helpful and sweet. Who acts that way?! Someone who's guilty! None of us believed that she would ever have the nerve to do something like this and then come on vacation with us, though, so we pushed our suspicions to the backs of our minds and had a WONDERFUL vacation!!





Gabe honestly had the BEST time. After all, he was with his family and his 2 favorite nurses. Lisa and the other not-nurse would load Gabe up in the morning, we'd catch a ride on the resort shuttle, we'd take him and the girls to the pool or beach all day, and then come home for nap time. She and Lisa even slept with Gabe every night and did his night-time care so that we could get a good night's sleep. Talk about going above and beyond your job! I am SO grateful to Lisa, she is truly a God-send and since she's been gone on her own vacations some this summer, I have realized even more how much I really depend on her and appreciate her. If I could clone Lisa, I would make about 100 of her because everyone with a child like Gabe should have a nurse like Lisa.

Arriving home, tan and happy from our vacation, the joy quickly dissolved into the reality of needing to find out who stole the credit card. The nurse who did it actually literally RAN as soon as we arrived home, claiming her grandson was injured and needing to get surgery in the hospital. On a Saturday. Yeah, we fell for it. But anyhow, that was the last time we saw her. Leaving, running away, from Gabe and from us. She had to know we were going to find out, and unluckily for her, Shaun was destined to be an investigator or something and within 2 days tracked down the evidence we needed to prove it was her. She made the mistake of paying 2 phone bills with the card so it wasn't hard to retrace the phone numbers that the card had paid for.

You can imagine how we felt after we found out - shock, denial, anger, hurt, confusion, betrayal. I went from being slightly sympathetic with her one day and asking Shaun, "Well, don't you think we could just let her come back and work and lock everything up?" (I was desperate) to wanting to wring her neck and blame her for everything the next day. She had ruined her life, without a doubt, but at the same time she also ruined ours. She was the only full-time nurse we had, doing 2 nights and 3 day shifts. Now we had no one to replace her. The agency didn't have anyone. The wonderful PRN (part-time, fill-in) nurse Michele who lives nearby would work whatever hours she had, but other than that, we were out of luck. Michele made it her ambition to orient and train someone to take her place, as the end of school was quickly approaching, and after that, she wouldn't be able to work.

I finally got to the point where I had to look elsewhere (another agency). I tried taking it "one day at a time" with the other agency for 4 weeks. Each week got worse, instead of better. There wasn't anyone to fill the shifts that non-nurse had left vacated and that Michele was doing her best to cover. I was slowly beginning to lose it. Honestly. The worry and stress I was feeling about not having the shifts covered and trying to juggle talking to 3 different agencies at the same time and split time between all the kids. I was about ready to be committed! Thankfully, God answers prayers and not always how I envision. I always think I know best but in the end He shows me that He knows even better. We ended up switching to another agency who has not since missed a shift!!! It's been a little bumpy but how can I argue with coverage? Isn't that what we've needed for the past... year?! Yay God! Did I mention Michele, Lisa, and Sophy (our dedicated 5-night nurse) came with us?! The new agencies filled whatever shifts were still open and has lots of nurses on-call if we have an open shift. What an answer to prayer!! That's all I have to say about that.

Enter crisis #2. Medical supply company. Gabe's supply company has been on us about the supplies he receives monthly. His coordinator told us a while back that all the supply companies were starting to do this because the supply companies don't always get paid fully from insurance and often eat the cost of some supplies. Such as those below...






The above pictures are of a Bivona cuffed trach, the type Gabe uses, and a suction catheter that we use to suction Gabe's trach. Both of these are needed in order for Gabe to LIVE! Well, Gabe's supply company suddenly decides they're not going to send out 5 trachs a month, to be changed weekly.

Wanna know why?

They are sending out a "Jaguar" and only getting paid for a "Volkswagon." The RN supervisor literally said this to us! Instead of taking it up with insurance or Gabe's coordinator they're taking it upon themselves to cut down the amount of supplies we receive, even deviating from his doctor-ordered Plan of Care!

It honestly enrages me that a supply comany who claims to "want the best for our son" would willingly hold back supplies because they're not getting fully paid. It's honestly not our problem. It's an insurance problem. We have been working on this for the last week and hoping it will be resolved. For now they've still only sent out 1 trach for the month. I know come Friday when we're changing another trach and that's one less that we have, I'll be sterssing again. :( They also don't want to send out the 200 suction catheters he needs, because some time back they cut it down to 100. He uses 100 in about 2 weeks, so what about the second half of the month?

So, this is our life. This is what we've been dealing with. I'm hoping the coming weeks can bring some victories, but then I guess there isn't a victory without a fight, right?!