Whether it was the recovery from a week long hospital stay, a culmination of bad news, not having a car, or the rainy weather, this week had been pretty stressful. Where do I even begin…Monday morning it all started off with a discussion with Medicaid. Why should I be surprised that Benjamin will probably lose his Medicaid soon? Why should I think that a system my family has paid into for so many years and never asked anything in return be helpful? (Sense the sarcasm and frustration) All I can do is pray and remember that God always provides for us what we need. Ten minutes later, I received a call from the pharmacy about Benjamin’s Synagis shot (for RSV). Of course…a new year with a new deductible and a $2000 dollar shot. No problem, thanks to our generous friends and family and a magnificent benefit, this will be covered. Like I said, God always provides. This much action before 10:00 am can get a person a little down to say the least. Yes, there are a few programs that help with funding for the Synagis shot, but of course, we were denied twice.
Monday, Tuesday, and Wednesday, Benjamin continued to improve. We had started to sit him up a bit, and he was back to his silly self. All was great until Wednesday night. KC and I were moving Benjamin back to his room, when I placed him in his bed, and he was white as a ghost. His lung had collapsed again. Benjamin gets the same look every time. I grabbed the suction, and watched the monitor. His O2 sats never dropped, but his heart rate started to rise. We started CPT (cupping on his chest to loosen secretions) with frequent suctioning, and continued with this every ten minutes for 1 to two hours. His color returned, but his heart rate exceeded 200 beats per minute, and he kept a fever until the morning. Benjamin, of course, acted as though nothing had happened. He was smiling and cooing at KC. You just can’t keep this kid down. The next day, he was back to himself again.
By this point, I was a little overwhelmed. How often could Benjamin’s lung collapse? Will we always be able to manage it at home? Why are there no resources for families who have worked so hard to provide for not only their family, but also other families? All I could do is keep repeating to myself, “God will provide.” Mom reminded me to let God worry for us, because He does a much better job at it. I told her I needed a conveyer belt straight to Him to send my worries. 🙂
Today, we had a visit with the pulmonologist, and he agreed that Benjamin looked great. We can now stop the antibiotics, and we talked about other options to loosen up the secretions in Benjamin’s chest. They placed a vest on him today that shakes “gently” to clear his lungs. (I say “gently” with a smile. Mom had to close her eyes.) Benjamin, being on the small side, shook from his nose to his toes. They will be able to turn down the intensity some, and as he grows larger, it shouldn’t look as violent. 🙂
We have also been without our van this week since we were having a ramp and tie downs put in. I haven’t really talked about it before with fear of jinxing the whole project. Now the work is complete, and I can give credit where credit is due. After months of trying to gain assistance through the state for a ramp, I started looking into other options. I contacted the MDA (PLEASE DONATE TO OUR MUSCLE WALK), and they were able to give me a few ideas. One organization they had just found out about was the Clifton Lewis Good Life Foundation. (another great place to donate) Our MDA group had met Cliff at a recent fundraiser for ALS. Cliff has Limb Girdle Muscular Dystrophy and spends his time helping others improve their quality of life. He is such an amazing person and has an amazing organization. Cliff agreed to help us adapt our vehicle. As I gradually started to receive pieces of the adaptive equipment for the van, we were hitting road blocks on finding someone to adapt the van for us. I started to think things were falling through, but Cliff never gave up and continued on his search. After some time, Prestige Auto Sound agreed to take a look at the van. They were determined to do this for us and do it right. Well, today we picked up the completed van. It looks fantastic, and even better than I ever expected. I made sure to bring Benjamin with me. I wanted them to meet our little angel. I wanted them to be able to put a face to the job. I hugged everyone with tears in my eyes. Before we left, everyone’s eyes were a little red. I think I even noticed a few watery eyes amongst some of the men. 🙂 They were such wonderful people to work with, and I would highly recommend them to anyone.
God will provide. Not only did God provide us with what we needed through these generous people, I believe God provided something for them through Benjamin. I hope they realize how appreciative we are for what they have done. With Benjamin, I have seen the best in people, in a world that can be so foggy with sadness. Benjamin just brings it out of people.
Thanks so much to The Clifton Lewis Good Life Foundation and Prestige Auto Sound for providing Benjamin with more opportunities for “The Good Life.”