Wed - Thursday, March 9 - 10, Days +20 and +21

Note:  Today is Wednesday, March 16th, and I'm getting so far behind that I'm not sure when I'll be able to write up the days between these and the previous post.  I thought I might as well get this up since it's seven days old. :) Thank you for the continued prayers!!!


Wednesday, March 9: Day +20

As tired as I was Tuesday evening from sinuses acting up, I decided to stay the night at my Mom's house again. Chase has been progressively getting better, so it was nice to not feel this highly urgent need to go back and be with him.  The bonus of course is that I got to spend an extra evening with William!

However, at 6:00 am, which is an unnaturally early time of day for me, I woke up coughing and my throat felt like it was burning.  Oh boy! I got up and immediately went into the kitchen, pilfering through the cabinets to see what kind of medicine my parents had.  Everything I had brought with me was in the bedroom I was sharing with William, in a plastic bag, and I didn't want to wake him up going through it. Thankfully, I found Benadryl, pain reliever, 24 hour allergy medicine, cough drops, and Mucinex.  I hate using Benadryl, but I knew if I didn't, the drainage would most likely get worse and then I could end up really sick.

I haven't taken Benadryl in a very long time.  I completely wipes Chase out when he has to have it, and it did the same for me.  Two little pills and I was out until about 1:30 in the afternoon.  I probably would have gotten out of bed earlier, but Maya, my 60lb Doberman-Beagle, jumped up on the bed with me and curled up against my chest.  I wrapped an arm around her and she lulled me back to sleep.  I think she knew I needed a little TLC.

After getting out of bed,  I was till not feeling all that great though, which really worried me.  How can I be at the hospital if I'm feeling like this?  Even though he is improving, he is still very high maintenance at this point.  And I mean that in the  nicest terms.  He simply doesn't have the energy to do a lot of the simple things for himself, so he needs someone who can "gofer" for him.

My Mom told me if I needed her to stay another night that wouldn't be a problem, but I was wondering if the hospital's air filtration would help my condition, so I had to at least try it.  I finished some laundry before we headed out, so we didn't get to Egleston until 6:00 pm.  Mom, with the assistance of nurses, had to clean up a big mess in the room.  Chase was on the sofa-bed and apparently one of his IV lines came loose, leaking whatever fluid he was receiving, along with some blood, all over him, the bed, and the floor.  His clothes were soaked, as were the linens and mattress pad.

William was so sweet to Chase.  He commented several times how much better he looked and asked how he felt.

I could tell William was still hoping Chase would be able to do more.  I'm sure they both wish for that.  Even though the visits are fairly brief, I think it has been really good for them both so see each other, especially for William to see Chase is improving each time he comes.

Chase's mouth on Monday, March 7, 2011

And his lips!!! I was amazed at how much they have healed!! The picture on the left was taken the day I left the hospital - after he chewed off all of the dried, dead skin that morning.  The image on the right was taken Wednesday evening.  It was so good to see him awake and looking more alert, too.  What a difference a couple of days makes.

Chase's mouth Wednesday, March 9, 2011

Since I wasn't 100% sure I would be able to stay, my mom was sweet enough to start some laundry going here while the boys chatted and I waited to see how I felt.
I literally thought if I laid down on the sofa-bed, I would fall asleep for the night.  


My head was pounding, my sinuses hurt, and my throat was sore.  I was really hoping the filtered air in here would help clear my head, and thankfully after a couple of hours I was already feeling better!  Granted, I've been taking whatever meds I can to combat this sinus gunk, but the air in here makes me want to hibernate for the Spring. 

In spite of his alertness, fatigue was written all over his face though, poor guy.  In an earlier text, Mom said there was a battle with him to do his laps.  Two nurses took him around for a few laps in the morning and then physical therapy came by to do more.  She had to guard the door to keep him from coming back in too soon.  She keeps a pretty tight schedule with him when she's here.  I'm far more loose about things, and I could tell he saw sucker written on my face because at the first mention of bath, he was balking.

"Nonna already worked me hard today. I shouldn't have to get a bath. I'm really tired."

Tough love won out in the end, even though it was late, and he got a bath.  Oh, but does he put on the guilt trip.  I still insist though that he do his chores even if I may not insist he does them to the extent they should be.  But Chase wouldn't be Chase if he did not try to negotiate and/or talk his way out of walking and bathing.

Lucky for him, he seemed to crash right away. However, anytime I come back here, the first night is always that transition night.  I could not wind down, and found myself reading.  Before I knew it, the time was well past 3:00 am. Yikes!


So, I will go to bed now!!


Thursday, March 10 : Day +21


In spite of having a difficult time winding down last night for sleep, I felt pretty good today.  The air in here is definitely making a difference.  Now only if I would learn to get to bed at a better time.

Chase and I were woken around 9:30 this morning by a visit from Jeannie and Monica - his BMT buddy.  Monica received great news that she won't have to go back to clinic for 3 months.  She looked great and tried to engage Chase in a conversation, but when it's that early, you can't get a whole lot out of him.

He looked good though and his lip had even reduced further!! I have been amazed at the change in him physically.  Granted, he still looks wiped out, has that bronchitis sounding cough, and dark circles under his eyes, but he's so much more alert.

I thought for sure he would want to go back to bed, but by the time Jeannie and Monica left, we were already starting our stream of doctors coming into the room.  The "parade" has all but disbanded since his lips are growing closer and closer back to normal.  However, last night I noticed he had these bumps on his skin that started on his head and then to his neck that looks like little dew drops.  Elise, the PA, came in and took a picture of it to send to a Dermatologist friend of hers.  I just know if someone wants to biopsy one, he will have a cow - as would I.

They aren't alarmed by it, and said his high fevers could have brought this on.  In fact, they were joking around with Chase saying that he isn't him unless he's coming up with something new for them to take a look at.  I think the day before it was a swollen elbow.

Once Chase got out of bed, he decided he wanted to sit on the sofa with me.  He watched TV, which I was glad to see him doing.  A dear childhood friend of mine from Washington, Trisha, called me while she was on her way to work. It was great catching up with her, and also very nice to speak to someone on the "outside".  All in all, having visitors, a great phone conversation with a friend, and Chase sitting next to me started the morning off in a great way!

Carissa, one of the physical therapists, came by to take Chase on his laps.  He resisted it of course, but I gave him my firm "This is not an option" speech, and he reluctantly got up and walked with her using his walker.  He takes a rest half way around the loop to catch his breath, but he did 5 laps.   He seems to be walking better and not becoming quite as winded as he was before, which is very encouraging.

When the doctors came to see him, they were all of the same mind that Chase looks great.  That made me feel good, and I hope Chase was bolstered by that as well.  He is definitely a different kid from last week!!  I asked about what they need him to do to get us discharged and it was:

1. 3 days with out a fever
2. No infection
3. Have to show that you are eating and drinking for 3 days - even minimally 

I admit to getting pretty psyched about that because he has numbers 1 and 2 behind him.  He's drinking, but has yet to make an attempt to eat.  Hopefully, that will come within the next few days though.  He asked for milk this morning, which he drank half a carton of.  Then he began coughing up mucositis and the next thing I knew the milk was right back up, too!  He hasn't vomited in a few days, so this, I'm sure was disappointing for him.   On the bright side, it had yet to curdle in his stomach so we were spared that  lovely scent!  Rebecca brought him back Kytril for nausea and he has felt fine since then.

By this time it was well after 1:00 and Chase started drifting off while watching TV.  Rebecca came in and took his temperature, and I think muttered, "Here we go."  He told her he felt like a fever was starting - NO, no, no, no, no, nooooooooooo!!!!

Here we go again on the stupid see-saw!!!  Let me off!!  I found this image today and boy does it fit perfectly for our situation.  Not to be negative, but I need to keep reminding myself to expect frustration before liberation!

He was wearing a hoodie jacket, so we made him take it off for about 15 minutes just in case the temperature reading was inaccurate.  It wasn't 38.2, which turned into 38.5 within a couple of hours.  She took blood for labs, and they started him back on Vancomycin.  The cultures won't tell us anything for at least 2-3 days.   He took some Tylenol and was at least still drinking ice water.

By shift-change, his temperature was 37.5, which is acceptable.  I was just hoping he wouldn't have a bounce in temperature once the Tylenol wore off, and thankfully he did not.  Once his temp got back to normal, Chase really started interacting more with me and his nurses.  We were watching TV for quite a while, including the Man vs. Wild show, which he said he really liked.  Somehow, we ended up on the topic of some of the gross things this guy has to eat.  Not the best topic in the world to think about, since live crickets were on the menu.

What really surprised me was Chase asking to see a movie last night.  I brought up some DVDs from home, including a couple of old WWII movies, so he chose Battle of the Bulge.  Since he had the fever, I didn't push him for more laps and a bath.  Instead he had to do some bedside exercises just to get some blood flowing.  And that movie? I forgot just how long it is!!  We were up until midnight watching it.  He wanted to see another one after that because he didn't realize it was so late.

Since he was already on the sofa, he elected to stay there, propped up by about 8 pillows!  I took over his bed, of course.  I'll have to wait until tomorrow to see how well I'm able to sleep here.  Until then, we are still taking this one day at a time.

God Bless!