Thursday, May 27, 2010

A Month and a Day Post Transplant

Yesterday marked one month since Cayden and I were in the operating room! On one hand, it seems like there's no way that it could have been that long ago, on the other hand, it seems like it was ions ago and is merely a distant memory.

At this point in my own recovery, I have mixed feelings. I have been a bit frustrated by the yo-yo of the up and down days. Some days I've felt pretty darn good, but other days my incision aches (to the point that the friction of my shirt irritates me). I have a hard time sleeping through the night, I get tired being on my feet too long (including not being able to walk too far), and normal meals periodically upset my stomach (a perfectly good Jamba Juice went from cup to stomach to toilet the other day...yuck). I've been told to expect to have both good and bad days for the next month or so. On top of it all, just when I started to feel better with the surgery stuff, my "female issues" reared their ugly heads, to the point where I was ready to make a mad dash to the ER about a week ago at 11 at night. My next clinic appointment is June 10th. I plan to beg for mercy on the 6 month waiting period for that surgery. I seriously don't know if I will last that long. Call me impatient, but I am really ready to feel good permanently!

Now that I have not been relegated to so much napping and lying down, I have started to feel both antcy and homesick. Keeping busy seems pretty easy, but I don't necessarily feel as productive as I am used to being. I'm still working on a couple of books that I've been reading, keeping up with paying bills that keep showing up back home, checking on insurance payments, attending clinic appointments for Cayden (and constantly re-doing the pill box each time the docs change or adjust his medications...which seems like everytime!), watching nephews play baseball, and helping out as much as my energy levels allow here at Kristi and Paul's house. I miss my house, my friends, my kitties, and my own bed! Rob and Angie left for the long drive home on Tuesday, and I have to say that I am very jealous that they get to be home, sleeping in their own beds! At this point, we don't know when we'll be allowed to leave California. All I know is that the doctors want to see that Cayden is doing well on his medications and his liver numbers need to be stable before we get the green light to head home. Boy are we going to have to do something about getting excess baggage back home!

Until today, Cayden was really starting to bounce back in his recovery. He's up to 131 pounds, which is a huge improvement considering he was hardly eating a week ago. Last Friday the Intervention Radiologist determined that his bile ducts had finally healed over and his tubing from his JP drain was removed from his sternum. On Monday, the two bile collection bags were disconnected from the tubes, the tubes were capped off, and the last of his surgery staples were removed. He will need to keep the tubing in for 2-3 months, so they will likely be removed by Cayden's GI doctor back home. Those tubes are much smaller than the surgical tubing from the JP drain, and have fortunately not caused Cayden the discomfort he had from the JP tubing. The doctors were pleased with his blood tests today. All of his "numbers" look excellent, they said. They stopped his potassium supplement since his potassium levels are normal and adjusted his anti-rejection medication (called Prograf) down by 1 milligram per dose. Because of the anti-rejection medication, he has a low magnesium level and must take 6 magnesium tablets per day. He's taking several other medications including Penicillin and Valcyte, since he no longer has his spleen. Both protect his body from other illnesses. On Tuesday, he started another anti-rejection medication called Cellcept. The doctors suspect that's why he wasn't feeling well today. Apparently it can cause gastrointestinal upset in some patients, so they've taken him off for now to see if he feels better over the weekend. He has just two weeks left of school (Palo Alto finishes June 10th, so he's got to buckle down and finish strong to get his credits to move on as a Junior next year.

On a fun note, I did manage to get a little pampering with a pedicure last week (courtesy of Angie and Rob for my 42nd birthday present-thanks guys!). Angie and I were supposed to have a girls' day with lunch at this yummy salad place called Pluto's followed by getting our toes done, but the guys "invited" themselves along. They decided to wander around while we were busy at Simply Be, the nail salon. All I have to say is REAL men DO get pedicures, don't they? R.S...thought you'd get by under the radar didn't you?

By the way, it's been raining off and on for the last 5 days or so. We were told this has been the coldest May on record down here. Doesn't that just figure??

Until next time...

1 comment:

  1. I'm sorry to hear your female issue has reared its ugly head. Having the surgery will be a good thing and will seem minor in comparison to what you just went through.

    I hear the weather is supposed to improve next week. I am certainly looking forward to being in a warmer climate.

    I know how homesick you must be, but I hope you're still in CA when April and I get back. We still want to come and see you while you're here.