In any other context a new piece of equipment would be exciting. Maybe a new lawn mower or piece of audio or stereo equipment. Nope it's a suction machine! And it lives up to it's name, it sucks:) One day you don't need a feeding tube and the next you do. One day you don't need oxygen, the next day you do, etc. It is just how this dumb disease is. You just don't know what is around the next corner, nor do you want to know, really.
Today was such a fabulous day. We had a friend come visit. While she was there I was able to take Hilary on a little outing to Target to pick up a few things. Tatum was happy and doing good all day. Then about 4:00 she just sounded really congested. She has done this a lot so I wasn't worried. I call them "episodes". She always does it around the same time of day and pretty regularly, so i wasn't too concerned. I just held her and tried to pat her back. I noticed that it wasn't subsiding at all, so I put on her monitor so I could monitor her breathing a little more closely. It was making me a little nervous, so I called my doctor and asked them if we qualified for a suction machine and what else I could do to help her. They ordered the machine for us, but it would not be delivered until evening. I called a friend from our neighborhood who is a nurse, and he was leaving work soon and said he would come by ASAP. I called several other nurses in the neighborhood, but luckily none of them were home!!! Don't they know that they are at my disposal at all times. (I hope you are sensing my sarcasm) I was feeling really nervous. If I kept her on her side and patted her side, she did pretty well, so that is what we did for the next 30 or so minute until our friend came. By then Tatum had settled down considerably. He looked her over and listened to her and gave some advice as to how to proceed, then they took Hilary for a little play date. He was like the good country doctor of old, taking care of our every immediate need.
Things have calmed down quite a bit, and who knows what tomorrow will be like? She still managed a lot of smiles tonight, whatever Tatum. She is such a delight. This day brought a lot of hard emotions to the forefront for me. I admit that I am scared. I am happy with how things are right now and I wish I could stop time from slipping away, but I know that it is. I love the song by Diamond Rio I think it is called "One More Day". I have heard it almost every day on the radio since Tatum got sick. I don't know if they just have it on the play list every morning right when I am getting ready or what. It talks about having just one more day with someone. It puts a lot of things into perspective. What insignificant things in our lives are we doing that take away precious time with the people we love? Where are we basing our happiness? Just some things to think about, right? Myself very much included.
Last but not least. We are going to be total fatty's by the time summer gets here. People are so so so kind. Tonight I was looking at all of the foods that we have been so blessed with and I said out loud while looking at it all "where are we going to put all of this?" My sweet Heidi replied "People are just trying to be nice". I told her that I knew that, it is really just so tender how people have rallied around us. We are sooo lucky. Oh, if you are in our area and need dinner, please come by and bring a friend or a doggy bag:)