The past few night when I have gotten home from work Jude has wanted me to hold him for extended periods of time. I enjoy holding him so this is not a huge effort on my part. However he has been very tense and whining and if I fail to pick him up in a timely fashion his whines get louder. This combined with a slight fever of 99.1 - 99.9 that keeps surfacing makes me wonder. I know that medical terms do not count those temps a fever but under Jude's dictionary it is. So last night I was holding him and I was stroking his hair and kissing his cheeks and he would smile really big. Then I would have to pause to suction him because he would begin coughing and then choking. I sat Jude up on my lap and supported his head so I could get him upright for awhile. Suddenly I felt overwhelmed with emotion and I said "Oh Jude........is mommy the reason you keep fighting" and I cried. A part of me always wants Jude with me! I look forward to seeing him when I get home so I can stroke his hair and kiss his big squishy cheeks. I talk to him and tell him about my day and he babbles back. Then I wonder how selfish I am that I want him here while he suffers so much. It's such a fine line of wonder and doubt when your child is so sick.
Overnight I heard Jude's apnea from the living room in my bedroom with my door shut. This was about 4am and I came out several times to help re position Jude to get him to stop struggling. Finally I turned him on to his right side and positioned several pillows to prop his head and side up this alleviated the apnea situation. When Charlotte got there she said it was the first time in days she had not arrived to him retracting badly. However this didn't last long. Charlotte sent me a text about 9:30..
"Jude's breath sounds are course and ronchi. His R lower lobe was very diminished. He has had his breathing treatment, a saline treatment, 10 minutes in the CPT vest, and 10 minutes of manual CPT. I am starting to hear some wheezing in the Right lower lobe. I never knew wheezing could sound so good".
Charlotte's invaluable and probably one of the most amazing nurses I have ever met! I checked in at lunch time and she said Jude was still sleeping and that she was finally hearing some good breath sounds but that earlier it was like he wasn't even using his lungs to breathe. So what does this mean? I am not sure. If you asked me I would tell you it either means his lung capacity is further deteriorating or he is starting another infection. He literally just came off the antibiotic and steroid so I am not even sure if they would try them again. However it could just be Jude having a really bad day too. I did notice his color changed again to me and he seemed very clammy last night. So it's all a big question. At least Jude is still smiling when he can.
We had two separate set of pictures taken of Jude this past week. One was with the family and the other with Charlotte showing his daily routine. I plan on making a special blog regarding Jude's daily routine. I thought this would help other parents and those that read my blog relate to Jude's daily life, happiness, and struggle. I am just waiting on the pictures but I did want to share a great one my friend Sarah captured.