This last Thursday was not one of my favorite days in my life, and by the end of the night I just wished it would not have happened or that it could have happened differently.
The first part of my day was fine. Work went well. Then it came time to take Sage to Primary's for his appointment with his Nutritionist. Shari so willingly offered to watch Skyler so he wouldn't have to sit through the possible two hour appointment and I was so thankful thinking that would solve all my stress for the day. It didn't quite do what I had hoped for my day, but as I left the hospital and was crying all the way to the truck I sure was glad he wasn't there for it. But this needs a little more explaining.
This was Sage's second visit to the Nutritionists at Primary Childrens. As most of you know Sage was born early and weighed 4lbs. Well, Sky had been early and small too, but caught up so we just figured Sage would too. But he hasn't. He gains weight each month but just not enough. He was 15lbs when he turned one and his pediatrician said we couldn't put off looking into why he wasn't growing anymore. She did blood work and set us up with Primary's. Blood work was normal, which we are thankful for. His first appointment at Primary's he weighed 15lbs 12oz. I had to answer lots of questions about why he was born so small, his eating habits, developmentally how he is doing. The team working with him all agree they see no reason as to why he's not gaining weight. So they gave me papers telling me how to pack more calories into his diet and instructions to add formula to his milk to add more calories and an appointment to come back in 4 weeks. We went home and began our quest to add fat and calories to everything. I thought we were doing good. Sage looked like he was getting bigger, he felt heavier to me. My Mom put him on her scale the week of his next appointment and it had said 16lbs so I was pretty hopeful and feeling good about going back.
After work Thursday I grabbed Sage and we headed to Salt Lake. We were called back to a room and I got him undressed to be weighed. I set him on the scale and waited to see the numbers to up. Well they did go up, just not nearly enough. Sage only weighed 15lbs 15oz. He had gained a whole 3oz in a month. My heart dropped and as I picked him up to walk back to the room I whispered to him it wasn't enough and we were in trouble. The Nutritionist and Dietitian came in next and asked what had happened. Had he been sick? Nope, he had drunk all his bottles, he had eaten good meals and snacks mostly. I thought he had gained more then that. Then they gave me the next steps that made me want to cry. They gave me more tips to try this month; different formula to try or add coconut milk to what we are already giving him to drink. Keep adding butter to everything we can. Add calories and fat everywhere we can. Don't worry about fruits, he needs the fat more. If all he wants is junk food during the Christmas season-give it to him, he needs the fat more then a healthy diet. Yet here's a list of healthy things he should be eating to get everything he needs in his diet. And lastly a prescription for an appetite stimulant. They will give him one more month to redeem himself. Then he may have to go on the same formula as my niece which is super super expensive. They may have to put a scope down his throat to see if there are any problems in his throat and tummy that are contributing to his not being able to gain weight. And the last option that had me blinking back tears was if we do all this and it doesn't work they will have to place a feeding tube. I work with people with feeding tubes. They aren't awful things by any means. But the thought of one in my little boy broke me. I left the room with my papers of suggestions and headed to the exit. The closer I got to the exit, the closer my tears were. I was sobbing by time I got to the truck. I got control of myself but lost it again when I called Josh to tell him. Then again when I had to call my Mom and arrange when to meet her for the funeral.
Here's the second part to my bad day. On Thanksgiving one of my friends that have had the blessing to work with in her home passed away. Tammy was only in her mid 40's. But she had gotten sick the week before and her body couldn't fight it this time. I met Tammy almost 8-9 years ago when she lived in a different group home. A couple years after that she was move to one of my group homes so she'd be happier. Carla and I had a blast getting to know Tammy. When she moved in we were given a list of dislikes. And we set out to find a list of likes for her. And we found quite a few and loved being with her along that journey. Then unfortunately only a couple years later we had to make some roommate changes and I no longer got to work with Tammy on a daily basis. I watched her slowly go back to the unhappy woman she had been when she moved in. Tammy is very small and didn't talk. Which makes it very easy for people to ignore her.
After I got the news that Tammy had passed, I was happy for her. Happy she no longer had her tiny stiff body holding her back. Happy she was no longer in pain and having to fight through sicknesses. And happy for her she no longer had to put up with staff coming in and out of her life, some caring for her more then others.
The funeral was sad, no family. Just past and present staff there to remember her. All wonderful people that cared for her. But for the rest of the day I couldn't help but think what a sad existence she had. I love my job. Love the people I get to work with. But it can be so easy for people to work in group homes and think the clients are just not worth their full attention. And the ones that are non verbal and use wheelchairs and can't move on their own can at times get the brunt of this attitude. And at times I feel like that was how Tammy was viewed.
I miss Tammy and hope that she doesn't look back on the times I worked with her and view me as one of those staff. I hope I gave her the love and attention she needed. I know she is happy now. How could you not be? She came to this earth and survived her test. She was our princess on Earth and I know she is Heavenly Fathers princess now.
Later that night at the end of Special Needs Mutual one of the participants Mom's was frantically searching for her daughter that she had dropped of at the beginning of the activity. I helped ask people if they had seen her then had to leave to get my clients home. As we pulled out of the church we saw the Mom and a leader running towards the care center we had visited for caroling that night; and there was an ambulance out front. Don't know the end of that story yet. I don't know if it was there for her daughter or not. All I know is as I continued driving I said a silent prayer and wished the day could start over, and end better.