Update from Keith: March 8th, 2008

We seem to be taking more steps backward than forward. Tonight, we were playing in the playroom when I noticed some blood in Taylor's PICC line. Her PICC line is the tube they inserted into her arm during her initial surgery back on January 23. She gets all of her hydration through her PICC line and the vast majority of her medicine goes through there as well.

It is not altogether unusual for her to have blood in her PICC line. On Thursday night, they transfused her through her PICC, giving her another unit of red blood. Every day they take blood from her PICC, so they can check her blood counts. These things can leave a little red tinge in the line.

Tonight was unusual, though. Her pump was on and was was supposedly pumping medicine into her arm. With medicine and hydration going in, no blood should be coming out. So, I went to the nurse's station while Taylor was working on some construction paper in the playroom and told her nurse what I had seen. The nurse came into check it and immediately said we had to go back to her room.

Back in her room, they determined that there was a hole in her PICC line. This is problematic. The easy problem is that it prevented her from getting anymore medicine and hydration. They gave her an IV in her other hand so that they could accomplish this. The hard problem is that the hole could allow infectious agents into her bloodstream which could make her septic. We're monitoring her temperature to make sure that this hasn't happened. The end result was that her PICC line, which can only be inserted surgically, has been removed (that was a painless matter of just pulling it out, which the nurses did over T's objections). The IV is only a temporary solution as it cannot be used to deliver chemo, which she is scheduled for on Tuesday. Most likely, she will have to have surgery on Monday to insert a new line.

I'm hoping that she'll get a port this time, instead of a PICC or other catheter. Initially, Kris and I were dead-set against a port. Kris had a catheter when she had cancer and we thought it was so much better than a port because a port lies under the skin necessitating a needle poke each time the doctors/nurses access it. This seemed a needless waste of pain to us. We didn't want T to have to go through that and were glad that she had a PICC (PICC stands for Peripherally Inserted Central Catheter).

Now, however, I favor a Port. For one thing, the skin acts as a natural barrier against infectious agents (although we are told that catheters and ports have about the same rate of infection). More importantly, a Port is far less restrictive than a catheter. T can't take a bath right now without wrapping her lower left arm in plastic to keep the PICC out of the water. There is no need for that with a port. This isn't such a big deal now, but during summer when she may want to go swimming, that could be huge. Also, the PICC just gets in the way. It is always sticking out of her arm and flopping by her side even when not hooked up to fluids. I'd rather just have the port which stays out of the way and could allow her to be more active (of course, active is the last thing she wants to be right now, but I am trying to think ahead a few months to a time when I hope things will be much better). Her oncologist has said all along that he prefers a port, but I'm not sure that there is that much time to plan ahead for Monday right now. We might just have to take whatever they are prepared to give us on Monday.

Taylor mostly had a good day today. We went for a short walk outside the hospital in the garden. The sunlight, which she hasn't seen for 12 days, practically blinded her, but it was nice to get out. Her pain has seemed OK today, although something in her mouth was bleeding tonight. It's a nightmare inside there. I'm glad it is too painful for her to open it very far. I'd be scared to see the sores that lie inside.

She has only 5 radiation treatments to go. That should be completed next Friday, but my guess is that she might miss at least Monday because of her failed PICC. They need to access a line to deliver her the anesthesia, and I'm not sure that they'll want to do it with just an IV and I'm not sure they'll want to put her down twice to also giver her the new line/port. We'll have to see what Monday has in store for us.

Looking back at the blog I wanted to update a couple of old issues. Things happen slowly here for us and we often forget to report on concerns that have receded since they are always replaced by fresh ones. Taylor's breathing issues have essentially completely subsided. Her sats aren't perfect but they rarely fall into danger territory anymore. When they do, it is usually because she has so much gunk in her mouth she can't take much air in. Taylor and I have reached an agreement about cleaning her mouth; she won't allow anyone else to clean it (at least when she is not under anesthesia) and I won't force it as long as she does a good job cleaning it herself a few times a day. Thus, T has become pretty good about swabbing her mouth out and cleaning it thoroughly. I'll spare the gory details, but suffice to say that some of the cleanings are especially productive and lead to a marked improvement in her respiration.

T's pain also seems to be much better these days. Dilaudid has made a good difference for her.

T hasn't thrown up for a few days which is nice. She continues to receive nutrition through her NG tube. I hope she's gaining some weight.

Today she got a bath for the first time in almost 2 weeks. She objected beforehand but enjoyed it enough that it was hard for us to get her out.

I hope this weekend will be uneventful. Monday certainly won't be.