We have had some hard days, especially two days ago on Friday.
We decided to have a permanent line put back into his body. Remember how his port had to be removed a week and a half ago due to infection? His PICC line (think of a semi-permanent IV with two tubes coming out just under his armpit) stopped working and we needed to do something else. We felt like it had been enough time for the old infection to clear with antibiotics...so onward we moved!
We decided to go with a Broviac over a port. The details of why aren't really important, but think of a Broviac as a permanent IV surgically implanted into a major artery and comes out of his chest and has two tubes that look like the end of an IV. Or you can google it. The port required a needle being stuck into Case's skin and had to be changed weekly; the Broviac doesn't require that and it seemed nicer.
So Friday morning, still admidst our mourning our bad news, he went in for surgery. These are usually minor and are day surgeries, but Case was admitted after for observation and because we had hopes of starting our new chemo regimen. Surgery was successful. Hooray.
Within a few hours Case's belly had grown very swollen, he had a crazy fever, and now his Broviac wasn't working (as in you couldn't get blood out of it). An x-ray showed that the end of the tubing came out of the artery it was supposed to be in. It would need to be surgically repaired, and it would have to wait until the next day...which means no chemo.
I pitched a fit, which resulted in Case going in for a SECOND surgery Friday night. The hopes of repositioning the end of the tubing failed and a whole new Broviac had to be placed in. At 10:00 pm, Case woke up in the ICU due to wheezing and not being able to breath well on his own. Well, that's not a surprise seeing as how he has been sedated FIVE times in one week, with three of those being all withing 32 hours of each other. And each sedation required a hard plastic breathing tube down his throat.
So we started chemo at 2:00 am Saturday morning in the ICU. The ICU is a wonderful place where vitals are checked hourly, day or night. One of these new chemos is an oral medication. 17 mL of fluid being flushed into Case's mouth, who doesn't eat, at 2:00 am was such a pathetic disaster. So now our baby has another tube (NG) up his nose so that the chemo can be flushed into his stomach daily.
It just never ends for our Case. He is having severe stomach cramping, of which we don't know if it's caused by the chemo or by the tumors in his belly. So he is on morphine, and still requires oxygen. In the words of a dear friend, "We are a HOT mess!" Oh yeah, and he has a bit of fluid on his left lung. Seriously.
We just really need this new chemo to stop any new growth. If so, we can possibly entertain going back to MIBG therapy in San Francisco. We know many people are fasting and praying on our behalf and we thank you all for that! We surely need it.