Connecting the Dots

As I look back over 2008 I can see that once again, it's a good thing that the Lord was in charge instead of me, and that sometimes things that seem unbearable prove in the end to have been absolutely vital. I've learned that it's very important for me to remember and record these kind of awarenesses--both to remember that I have seen the hand of the Lord in my life (or the life of my children) and to help me have faith in His plan during future trials.

In February of 2008 Cindy Lynn went into the hospital for what we would consider a "routine CF tune-up." She needed IV antibiotics and it was a convenient time to do it. It seemed a pretty uncomplicated decision.

Instead it was a week of misery. Because she wanted conscious sedation for the insertion of her PIC line (like an IV line, only much deeper, and trust me, you would want sedation too!) she couldn't eat anything before the procedure. They didn't decide until after 3 that first day that they weren't going to be able to install the PIC, and then they finally let her eat. The same thing happened again on day 2, except that at 3 they decided that they would be able to install the PIC line, which they did not do until 5. After which she was allowed too eat. And despite the sedation it was a miserably painful procedure.

In addition to the misery that Cindy Lynn suffered the hospitalization made my life difficult. All of the kids wanted to go and spend time with her, but it was overwhelming to take them all at the same time. And she didn't want to be alone in the evening either. So I did a lot of driving back and forth from the hospital. The day she was supposed to be discharged I took the three little kids with me. At one point, after we had already been there an hour, the nurse in charge suggested that she would not be ready to discharge for as long as three more hours. I was not a very nice person at that point, I probably offered to let her babysit 3 seven year olds in a 60 square foot room for the next three hours!

After the hospital discharge there were 2 more weeks of IV antibiotics at home, which was more convenient than the hospital but still mean less sleep for Russ and me. We were glad when the whole experience was over. We were Done and now she would be Healthy again.

Until she contracted influenza just one week after the antibiotics were over. Yes, she'd had her flu shot, but the flu shots last year were only 50% effective. And Cindy Lynn was lucky enough to come into contact with the right germs. Now I am not a fan of flu shots--I have never had one myself, and don't intend to have one. (Because I am not a cow. But that is a topic for another time.) Regardless of my feelings about flu shots, Cindy Lynn has to have them. A lot of people think flu shots are for the nasty throw-up illnesses that go around, but they're not. They're give some protection against nasty in your lungs illnesses that could be really deadly for people like Cindy Lynn. So to realize that she had influenza was scary. And to make it even worse, she was scheduled to go back out to Idaho for the summer semester of college just three weeks later. This meant there wasn't even time to wait and see if her body could fight off the virus on it's own--and so back into the hospital she went.

Hospitalization #2 had it's own set of problems. Including more days without food, another agonizing PIC line placement (even with the extra help from an ultrasound), and a doctor who did not want to release her from the hospital to finish the IV's at home. It was an emotionally exhausting week, and I will be forever grateful to her friend Ben who hung out with her a lot and provided company and emotional support. Then we got to do 2 more weeks of IV's in the middle of the night. We were tired.

After the second round of IV's was done we had a little moment of revelation. The PIC line placements had all been difficult and painful, even with the use of sedation and the guidance of the ultrasound. And we were pretty sure that not only was her insurance deductible met, but quite possibly her out-of-pocket maximum as well. It seemed like an auspicious time to investigate a surgical procedure to get a device called a port installed, which would bypass the need for a PIC line in the future. The surgery went off without a hitch and we thought that all of the medical drama was over.

Unfortunately, she still wasn't back to normal--what we call baseline, and so in June she went in for yet another round of IV's. This time it was relatively uneventful. Due to the newly installed port they were able to start the IV's immediately and easily. And this time we negotiated a release date in advance, so there were no unpleasant surprises there.

At the same time that all of the hospital dramas were taking place, other interesting things were happening. In January she and Mahon got engaged, and in the spring we started gathering information about what would happen with her insurance once she was married. There was no happy news there. The worst part was learning that BYU-I had no prescription coverage whatsoever! In order to soften that blow they have a pharmacy on campus that provides prescription medicines at a fairly reasonable cost, but for someone with a $35,000/year prescription medicine habit, fairly reasonable doesn't cut it. The only possible way we could see for her to get medical coverage was to qualify for SSI, which would then qualify her for medicaid. We were told by a lawyer specializing in SSI that she would need to have been hospitalized 3 times in the last 12 months in order to have any chance of getting approved for SSI, and that it was still a long shot. She said that the SSI approval process typically took as long as 6 months, and that if her application was denied it would take another 6+ months to appeal that decision. And, of course, she could not officially apply for SSI until after she was married. After lots of prayer and fasting we felt like things would work out ok, but it was still frightening to not know exactly how that was going to happen.

The week that Cindy Lynn got married she found out that she had won a scholarship from one of the pharmaceutical companies that provides medications for people with CF. It paid for most of the tuition for this year, but more importantly, it provided a year's worth of her most expensive medication for free! She later found out that the company that makes her other really really expensive medication has a compassionate care program so that people without insurance could still get the medicine. This left her with about $250/month of medicines that she would need to pay for--which is a lot, but a whole lot better than $3000/month! I could finally see a way that Heavenly Father could provide what Cindy Lynn needed while she waited for SSI, even if it took a long time.

Cindy Lynn found out right before Christmas that she has been approved for SSI. I was so excited--she didn't even get denied! She doesn't even have to appeal! It actually happened! Now we are just waiting for the medicaid paperwork, which I think we can do more calmly.

The year in retrospect looks much different than it felt while we were living it. Having to have that second hospitalization, with a second painful PIC line placement, seemed like too much to bear. In hindsight, that hospitalization provided both the incentive to get the port, and the medical history necessary to qualify for SSI and medicaid. Without that hospitalization--if she had had a regular health year with only one round of IV antibiotics, neither would have been a possibility.

It is amazing to me to look back and connect the dots of the Lord's plan over the last year. I am forever grateful that the Lord doesn't withhold blessings because of my impatience or lack of faith; that he continues to tutor me patiently. And I look forward to the day when I will be able,even in the midst of a trial, to trust in the Lord and his plan.