Once again I have been on another emotional roller coaster. Thankfully it is not directly due to Logan's health. He is actually doing very well. My stress is related to the care he receives. With this blog I try to be respectful about others feelings and reputations. I have no intention of gossiping, transmitting complaints related to individual people, or pointing fingers at those who make mistakes. Right now we are going through a tough time with the company that is in charge of Logan's nursing care. The direct care he is given is phenomenal but there seems to be some turmoil within the company. As Logan's caregiver and advocate I am going to do what is required to obtain the best care for him. Right now that job has become very stressful and has possibly caused me a case of prolonged high blood pressure! It is all going to be sorted out because that is my job as his mom, but this sucks. I pray that we will get to a better place with our situation and my stress levels will decrease. Thank you for listening. I know a lot of what I just said does not completely make sense!
Moving on from that... I have to say Logan and Lauren are real troopers. Our air conditioner went out a couple of days ago. It has been hot and miserable. Tonight we are having a sleepover in the basement. I have to say, it is so comforting having them close. I love to be able to wake up and peek open my eyes to watch them sleep. They are so peaceful with not a care or worry in the world. Those are the moments when all the stress, worry, and distractions melt away. Those are the moments to live for and tonight I get my precious time with them! I am so lucky to have them!
Tomorrow Logan goes to the pulmonologist for a check up. It will be the first visit since his hospitalization. I have a list of questions to ask. Logan has been on oxygen since the hospitalization. There are times when the oxygen is essential to keep his oxygen saturation up. Other times he holds well on his own. I guess we will see. I also toss and turn as to what we should do regarding his chronic aspiration problems. As you all know, cold and flu season is fast approaching. Do we wait until he is sick again to decide to intervene or do we start looking at interventions that may decrease his aspiration. As of now, he is only aspirating saliva and possibly aspirating stomach contents which are very minimal as his food bypasses his stomach, but it is enough to cause oxygenation problems and anxiety for Logan. I will continue to update the blog as we decide what route to pursue. I truly would like to know on a 0-10 scale, how bad are things for him. Sometimes I wonder "am I blowing this out of proportion". I am always so worried that I am taking from others by asking for more services and more help. I have such a hard time knowing where Logan is at medically. I have gotten so used to adapting to the changes that my perception has become hazy.
Thank you for listening and for the continued support. Also, please put my Grandpa Mervyn in your prayers tonight. He has been fiercely wrestling cancer and is in the hospital. Unfortunately he is in Canada so a visit is not in the cards for me but his health and comfort will weigh heavily on my heart. Thank you to my wonderful family in Ontario for giving him more love and support anyone could ask for!
Uncle Mike, my mom Patricia, Grandpa Mervyn, and Aunt Theresa (2009)
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