Thursday, February 24, 2011: Day +7

Thursday, February 24, 2011 - Day +7

Today is one week post transplant and his 14th day in the hospital.

Last night, Chase spiked a fever again. It was one of his highest at just over 39 degrees Celsius. The doctors this morning said since he's been spiking and/or has continuously run a fever for days, they are going to start a different anti-fungal medication. I'm not sure if this is in addition to what he is already receiving or if they are replacing the existing one with a stronger one.

His lips are still no better than they were before. In fact, they're worse. Dr.Horan said they have put a call into dermatology, so we should expect to see them sometime today. They want to be able to rule out any possible reactions to medications, allergies, etc. In spite of his mouth, both of the BMT docs feel he is doing very well overall. They are encouraging him daily to keep up with his mouth care, walking, and showers. They also said we should expect to see some improvement in a week. A week? When you're in Chase's shape a week feels more like several months.

Remember the playground see-saw or teeter-totter? Have you ever been on one with another person who could basically control the whole ride? Instead of the steady, predictable give and take, this person, usually with the long legs, could keep you from moving a whole lot or at least restrict your movement. Sure, everyone once in a while, they'd led you go up so you could have your turn in the air, but you'd come down pretty fast most likely. And moving back up again was either in grueling increments or a few downward turns were thrown in, just to really frustrate you.

That is what this transplant process feels like.

Chase has had his "good" days, but now he's on the downside of the see-saw, but his feet haven't quite touched the ground enough for him to spring back up. If his mucositis wasn't enough to deal with, then you have his poor mouth, and now a high fever. 39 Celsius is 102 F, and since he can't swallow any medication at this time - pill or liquid - there isn't much we can do. I know the fever is making him absolutely miserable, too. He doesn't want me to even touch him and I have to fight to keep the blankets off of him. He's freezing, but he can't stay covered up or it will only make it worse.  Hopefully, he'll be able to take medicine by mouth very soon to at least take the edge off of it.

4:00 pm
There are two dermatologists here trying to figure out what the heck is going on with Chase's mouth. So far they have nothing. I gave them permission to take pictures of his lips. I imagine if there is something they discover, his lips may end up immortalized. (Just a little humor there). They've actually gotten worse since the earlier photo in the previous post.

His upper lip is not quite as swollen, but his lower lip is awful. It's bigger and since he sleeps with his head angled down or to the side, he drools profusely, which has caused the skin on the inside and at the sides of his mouth to split and bleed. Thanks to low platelets, he's probably bleeding more than a normal person would. He's already had one unit of platelets and I'm anticipating more of that along with blood transfusions until this bleeding is under control.

It's all just a matter of it being a waiting game for his counts to start rebuilding, waiting for that little blip on the radar that means he is taking that first step toward recovery.

Mom just called, too. She is on her way here to and needed to return a movie she rented for Chase and I to watch, but the store is closed! I recall seeing on the news that Blockbuster is trying to find a buyer and has declared bankruptcy. That was only a few days ago I saw that and right about the time she rented the movie. I guess they have already started closing stores! Unfortunately, it is the Blockbuster store that is the easier of the two to access. Drat it! I wonder now if the other store, which is a pain to get to, has also closed down. He's not exactly in a mood to watch movies or TV right now, so it's not a pressing issue at the moment.  (Note After The Fact: BOTH of the Blockbuster Video stores near here are closing!! What a pain.)

If you don't want to read the rest, that's fine.  I just needed to vent!!

Thank you again for the prayers and support!!  God Bless!

Not directly related to Chase, but still part of what we're dealing with...
I am going home this evening - my home. The Internet/phone and Dish Network services we had were in David's name and neither (stupid) company allows you to transfer it into someone else's name. He had to actually call in, stop the service completely, and now I have to return all equipment before I can get the service re-started.  Also to avoid about $600 in equipment charges between the two. What a pain!! 

However, two small bonuses are that I won't have a Dish or Comcast bill to pay since they bill forward AND I get to take advantage of new customer pricing. Hey, I will take every little break I can get, but their policy of changing account ownership still stinks!

At least Dish Network sent a pre-paid box to retrieve their DVR, which helps. Or at least I thought it helped until I started the process of packing it up, which I was going to do on Thursday but ended up passing out around 11:15 - unheard of for me!  Just getting the DVR unhooked from all of the cables was a chore because of the narrow slot it has in my cabinet.  Plus, the cables run behind it down to another piece of equipment and naturally neither the DVR or that other thing would pull out enough to easily unscrew the cables.  Lovely.


Once that was done, I took another look at the instructions and realized I had to go outside and take off pieces from the satellite itself.  Excuse me?  There are three satellites, one of which I don't believe is in use, but I really did not want to chance anything, so I dismantled all of them.

But guess when I discovered I had to do this?  Silly me waited until the sun had basically set!   This pic is really blurry, but I wanted you to get the idea of how dark it was.  That beacon of light is my flashlight, and this is post dismantling.

So, I with my flashlight and a phillips head unscrewed Part A so I could then unscrew the cables attached to it.  Getting Part A off wasn't the issue.  It was the stupid cables!!  You probably know the kind I'm talking about - the ones that never seem like you can tighten them OR get them lose once they are tightened? Coax (see picture).  And could I unscrew them by hand? Nope.

Thank goodness I decided to buy myself a cheap (made in China) tool kit before Christmas, because I definitely needed it.  I ended up with my Phillips head and flashlight in one pocket and my wrench in the other.

Well, the piece that had to come off first is the one which angles
back toward the dish, like in the picture.  If you look carefully, you can see the coax cables coming out of the bottom. What you don't see is how close they are together when they are attached.  There is no more than a 1/4" gap between them.  I'm 5'3, there was a bush in my way, and I really had to stretch to get to that tallest satellite.   I also had to remove some kind of switch as well that was tied to the pole with a zip tie.  One of the boys, probably William, left a pocket knife in the kitchen, which I used to cut it.   With that done, I was finally able to get the blasted box packed up and ready to go.  I probably sent more than they wanted, but at this point I don't care!

Now, I just need to get my Internet and TV set back up.  I've yet to decide if I'm staying with Comcast for Internet, but I will stay with Dish.  As for Internet, I just have to make sure I have enough bandwidth to satisfy their Xbox Live needs. :)