His appetite is back!

Today it has been two weeks since we came back to the hospital to stay in ICS after our one wonderful week at home.  I keep thinking about the Sunday before we came back when I was tidying up my room and I actually unpacked my hospital bags.  It felt so good to put my hair dryer under my sink and my brush in the drawer along with my makeup, lotions and that toothbrush!  I threw out the extra toothbrush since I’ve had one for home and one for hospital for the past 6 months.  Yes, I really believed that we were done with hospital stays…silly me.  Of course, I forgot my hair dryer at home the last time I was at home for the night and then came back to switch with Josh. This morning, after spending the past 2 days with flat hair & looking like I just woke up all day long, I was so thankful to be able to look on the board and see who I know that’s “in” with me and ask to borrow a hair dryer.  I went and knocked on 4401 because she’s on the same hall with me just two doors down.  She had just gone to switch with Daddy. So, I knocked on 4420 and she was happy to loan me her hair dryer.  …now I feel presentable, haha.   It’s nice to know people around here.  …Sad, but so nice.

Jacob seems to be sleeping all the time these past 2 days.  I don’t really know what to make of it except to just hope that he needs sleep because his body is healing.  I also worry though, because I know how hard this is for him and I hope that he’s not just depressed and discouraged.  He has every right to be tired, but it so hard for me not to worry.  Sometimes I sure wish he was more expressive and could talk to me about his feelings more, explain to me just what he’s going through and help me understand and I could help him deal with it all.  But, he’s a boy…he’s a teenage boy, and he doesn’t talk about much of anything.  When he does bring something up, he wants a quick, direct answer and then he wants move on and get back to his movie, his game, his breakfast or his nap…whatever it is, is much more interesting than talking for him. …oh well.

Speaking of Breakfast, being on steroids has done some amazing things. The first of which is to give Jacob an insatiable appetite!  It’s really kind-of funny to watch, but mostly it is so refreshing to actually see him eat.  This morning he ordered a “bacon, sausage, egg and cheese English muffin sandwich”.  You’d think that would be enough, but he also ordered waffles with butter & syrup AND a plate of hash-browns!  The most amazing part is that he ate ALL of it except for one of the waffles.    He actually asks for food before he even opens his eyes and sometimes I look over at him and he’s chewing something while his eyes are still closed! Yesterday, he fell asleep while eating his bacon, sausage, egg & cheese muffin sandwich.  I should have taken a picture…

The hard part about the appetite is that he’s super hungry all the time, but he craves really heavy stuff like sausage, bacon, cheeseburgers, fries, nachos…I think you get the idea.  From what I hear from other moms with kiddos on steroids, this is totally normal and all their kids crave really high fat, greasy, crunchy, salty foods.  The part that worries me is that his poor stomach is just raw right now besides the fact that it’s probably shrunk quite a bit since going through all this.  He eats & eats and then he’s nauseous right afterward.  Then, he asks for anti-nausea meds so he won’t throw up and those make him really tired.  Since he needs to get up and walk around in order to drain the fluids in his lungs, this makes it really challenging.  The doctor explained this morning that his digestive system doesn’t really work well right now because of transplant.  He isn’t able to absorb the nutrients well and he’s not really digesting it well either so it seems to just make him feel sick and go right through him.

So far, the steroids have made him a little bit moody, but really not too bad.  Mostly, he is frustrated over the whole thing…but I would expect him to feel that with or without the steroids.  I think the feeling is just intensified by them.

The best news is that they seem to be working very well.  This morning’s chest x-ray looked really very good!  I am going to ask for copies of these x-rays because the contrast between the ones in the beginning to the most recent is amazing.  I hate that he has an x-ray every single morning and gets exposed to that radiation every day, but then I think of the kids that go to radiation therapy and my heart breaks for them…and then I can’t complain that all he gets is a picture taken. 

His drainage output from the chest tube has been decreasing a little bit each day.  For three days he drained 110 mls each day and then he dropped to 100 and yesterday it was 90. When he gets down to draining around 50 mls in a 24 hour period, they will take out the chest tube.  He’ll then need a day or so to recover and heal from that before he can go home.

We can hardly wait!...