We have had a rough week. We got home to Texas late Tuesday, June 5th. We "enjoyed" 5 days at home, and I put that in para thesis because Case was a mess. I know I said after chemo we had to deal with "angry baby," but it didn't know the definition of it. After surgery he was so bitter, angry, and unhappy. I can't blame him, but it made life miserable for everyone involved.
Anyway, the very morning he started to seem more like himself, we checked into our regular hospital here in Texas for his first dose of high-risk, high-dose chemo. He didn't even have a chance to be happy! This chemo is 4 times the strength of what he received before. Or doctor said it was like throwing a huge bucket of barf in his face! But the nausea proved to be not even the issue.
I noticed on Wednesday night that he felt hot and, lo and behold, he had a fever. He also was breathing shallowly. So long story short, by the next morning, he was transferred to the Intensive Care Unit and had a breathing cannula (the breathing tube that sits in his nostrils). Turns out he had a ton of fluid on his lungs. I think to date he has had about eight X-rays!
He was sedated on Friday, they aspirated some fluid from his chest (drew fluid out through a needle). That wasn't sufficient, so Saturday he had a breathing tube put in, a chest tube put in, and a small tube down his nose that goes to his stomach. A ton of fluid has come out (over 1000 mL), which is great. He got the breathing tube out and is not sedated anymore (he had been sedated for 2 full days).
So we are on the mend, but still have a lot ahead of us. The fluid build up is leaking from his lymph system, which apparently never healed from surgery. He had a lot of lymph nodes removed and apparently you can't stitch up the lymph system, it just has to heal on its own.
Want to know how it heals? He can't eat for 2 weeks. Yep, he can't eat. Doesnt seem right, does it? When you eat the lymph system carries away extra waste, so to get the lymph to not flow, you don't give it anything to cary away. He is on IV nutrition. I am just really sad because I can't nurse him at all, and that really sustained him through past chemos and stressful times.
So as if having cancer and going through chemo wasn't enough to deal with, we have even more trash dumped onto our laps. We will be here at least another week, if not longer. He is already neutropenia, so if he gets a fever, we have to stay longer. By the time he might feel ready to go home, it will probably be time for round 2 of chemo. Boo! I am trying not to think about that. As usual, just pray for our little boy. He needs comfort and he needs a brief respite from all these medical emergencies he is having. He has such a long road of treatment ahead of him, and these "road bumps" (so much more than that) are only prolonging the treatment and misery! Poor boy.