Journal entry August 1, 2014

 

Madox had an okay night. His breathing is sounding wet while he sleeps and he is now snoring which is new for him. I listened to his chest yesterday and he has significant decreases to his left lobe throughout. This could be why he has difficulty taking a deep breath. His sleep was okay initially, 5 hours, but after that kept waking frequently. 6am we were wide awake, so I snuggled up close to him and spooned while we both fell back asleep until 6:45am. We went down and stretched him out on the ground for a bit. Madox always needs extra breakthrough sprays first thing in the morning, the pain is usually so sharp.

 

 

We played some video games after breakfast, but Madox was pretty tired within a few hours. He was falling asleep on the couch, so we convinced him to nap. He always fights it. He gets sad and says he wants to play and not always sleep. I said I was sorry and wish he could play too but he is so very tired and needs rest. He is always in more pain, or symptoms appear the more tired he is. After an hour nap, we had lunch. He was having trouble swallowing his food. He was able to but I can tell he was having difficulty. He needed to chew a lot, use a strong swallow, and cough cough cough after. He seemed to aspirate every bite. After the coughing, he would casually say “wrong tube” 🙁   Yea I know buddy, wrong tube 🙁   I hate that he is beginning to lose his swallow.

 

 

Madox requested Chinese food so I ran out to get some. We all ate at the table with his uncle who popped in to visit. Madox doesn’t eat at the table too often due to the pain in his back, but today he wanted to. It was nice to see him up trying to eat. It was SO difficult watching as Madox was struggling to swallow. Even the soft noodles were hard for him to swallow. He barely ate anything in the end. I just want to break down and cry everytime I see changes in him. But I hold it together for him and Valin. I am dying inside watching my baby suffer and struggle to live. We finally moved him back to the couch and gave him yogurt and strawberries, which seemed a little easier for him.

 

 

During the day Madox had asked about going back to school in September. I asked if he wanted to go and he said he did. I told him he would need the wheelchair and asked how he felt about it. He said it would be fine as he misses his friends, and wants to be elsewhere, other than home. Breaks my heart knowing he won’t make it to September. I would never dare tell him that. I really want to be wrong.


 

That journal entry was a glimpse of the start of his decline. We knew it wasn’t going to be much longer, but we didn’t know he would take his last breath in just 7 more days. These memories are so hard to reread, but necessary so we remember the details. So we understand his fight, how he suffered and how we don’t want the same fate for other children. My heart breaks over and over and over. I wish I could have traded places with you Madox.

 

Often falling asleep on the floor after stretches or massages to his legs. Can’t resist snuggling up close