In Recovery from Surgery

Nothing like a last minute Friday afternoon surgery just to make sure we're all completely exhausted.

Liam is back in his room now, having a nap. He woke up from anesthetic quite upset, but generally likes a nap after he gets anesthetic.

I expect this talk of central lines doesn't make sense to most people, just be glad if you never have to know about one. If you want to see some pictures and details, google "Broviac".

Liam got a smaller central line this time, because he's done some of the procedures that required a bigger one. As much as I dislike the central line, it prevents Liam from getting pokes multiple times a week, so it is a necessary evil. The central line is used for IV fluids, blood transfusions, chemo, antibiotics, etc, as well as taking blood for blood tests.

Let's hope we have better luck with this one.

Rest Day

Today is "rest day" in between the two days of chemo and the stem cell transplant. It wasn't as quiet as we had hoped because Liam's central line has come out further again.

In July, Liam's central line "cuff" had come out:
http://www.strong-willedwarrior.blogspot.ca/2012/07/never-dull-day.html

The central line is supposed to heal into the skin and not move, but obviously Liam's hasn't. Now it came out another centimeter, we don't know why. They had to do an x-ray to make sure it is still in the correct place inside the vein going to his heart. It should be fine for the stem cell transplant tomorrow, but likely not ok for any further chemo. We'll discuss with the doctors what is the best plan, but nothing can really be done until Liam's blood cell counts are back up anyway. (to replace requires surgery)

Liam only ate a bowl of cereal and a banana today, so we'll be putting the NG tube back in tomorrow, but this is not unexpected.

Liam still seems to be feeling ok, although his energy level is down today, he spent more time in bed and on the iPad than normal for him.

We met the BMT (bone marrow transplant) physiotherapist, he's going to help us make sure Liam is getting around and not staying in bed too much in the next while. Liam has a mat in the room to play on the floor and he also brought a small chair for another place for Liam to sit outside of bed. We have seen OT/PT (occupational and physical therapy) for neurology regularly ever since Liam's original surgery. They are by far, Liam's favourite appointments, they have so many toys!

Never a Dull Day

Liam's central line requires a lot of maintenance and care. For those who don't know a central line is, it is a catheter that hangs from his chest that goes through a vein to his heart. Liam has it so he doesn't have to get IVs and needles every time they take blood, give him chemo, antibiotics or a blood transfusion, since he has multiple of these every week. Is is very handy, but also a huge source of stress for us, because of the risk of infection, etc.

Liam doesn't seem to notice it, he jumps around like it's just a part of him, it mainly freaks us out when he's jumping around or sliding on his stomach!

Last night we went to do the weekly dressing change and found that it had moved farther out of his chest. The "cuff" that used to be under his skin was outside. We had no idea how bad this was, but we tend to panic about everything with the central line. I paged the oncologist last night, emailed him a picture, he reassured us that it still looked safe (thank goodness, as this was around 9pm, needless to say we didn't want to go to the hospital). The doctor saw us right away this morning and did an xray to make sure it was still in place.

The good news is that it is still in the right place. The bad news is that because it moved, it just freaks us out even more!

http://en.wikipedia.org/wiki/Central_venous_catheter