Consolidation - Day 15

Treatment this week was supposed to be quick and easy, with "supposed to be" the key phrase here.

We were literally scheduled for our least busy day - meaning we only had a clinic visit and a lumbar puncture scheduled. Clinic was at 8:30 and was just going to be labwork and a check up with the doctor. No IV chemo, no added medications, nothing. Just a check up to see where his numbers are. Unfortunately, we got to clinic and JP's port would not access. We could get it to flush and allow fluids into his bloodstream but couldn't get any blood to return. This is the essential part of our visits - to get bloodwork! Without blood, this is a difficult thing to do! Dr. Lemons called down to RTU to see if they could squeeze us in earlier than our 10:30 appointment (they said they could) and he ordered TPA up to clinic so that we could have the LP then head back upstairs. TPA is a drug used to help unclot any blood that may have gotten into the line blocking it from being drawn. About 9:00 we headed down for JP's LP. Good thing we went early, because they didn't take us back until almost 11:00! Oh well, they said they had some complications with earlier procedures and even though we were bugged that we sat around and waited for what seemed like forever, I reminded myself that I'm grateful things are going along well and we're not having many complications, aside from the port access trouble, of course. Overall, JP is responding to treatment just like he should be and every surgery has gone well. We could be singing a very different song right now so I'm just grateful for every day that we are healthy and doing well.

We finished at RTU about 12:30. By this time, I called Shelly to see how Elsie was doing and to let her know we were not going to be back as soon as we thought. We went back upstairs where the nurse hooked up the TPA and put it into JP's line. The trick with TPA is that it has to sit for 30 minutes at a time. The first time we tried it was no good so we had to wait another 30 minutes. We decided I better go pump and drop some more milk off because Elsie had already finished off what I had left for her and we didn't know how much longer we were going to be. While I was gone, they were able to get the line to work and finally got some blood return. Phew! This port has been finicky since it was put in - the surgeon told us it took him 2 or 3 times longer to do than it usually does, and every time we've tried to draw from it it seems to be picky. It's very positional, like if JP isn't sitting up super straight it usually won't pull. Last week the nurse tried for 5 minutes before it finally worked. It's supposed to be a permanent line for the next 3 years throughout treatment and I really hope we don't have to have it redone. That would be awful. We finally got home around 3:00, our longest outpatient day at the hospital yet - 7 hours! Again, I'm just grateful that besides this little hiccup, things seem to be going well. He's our happy little boy when we're at home and his numbers continue to be where they should be.

Telling me "Peace out, Mom!"

Seriously, Mom? Don't you have enough pictures?

Ugh, stop already!

Fine, I'll cheese. Just so you'll leave me alone!

Waiting at the RTU, showing off his glowing finger.

The TPA drug...

Hanging out, finally getting some food and the TPA.



As a side note, have you noticed how many acronyms I use? JP, IV, LP, TPA, RTU - sometimes I wonder if I should keep a running list on the side of our blog so everyone knows what I am talking about since it's all so normal for me to just ramble off...