Monday, February 20, 2012


Steroid update:  Well, the good thing is that they work.
We tried a week back on just 10mg to see if that would do the trick, but it wasn't enough.  After 6 days at that dose, Jacob still needed his oxygen tank all day long and we were taking it with us everywhere.  He went through 3 tanks in 5 days.  So, I called and asked to get him in to his clinic appt a day early so they could check him out.  That was a long day.
He needed his monthly dose of Pentamadine which takes about 45 minutes start to finish.  He has to breathe it in so they give him albuterol first to open up his lungs and then he has to inhale the Pentamadine mist for about 20 minutes.  Everyone has to leave the room while he does it so we don't breathe it in too.
He also needed a transfusion of IVIG that day which takes several hours.  IVIG is a collection of just antibodies from a whole bunch of blood donors.  Since Jacob doesn't have any antibodies of his own yet and his new marrow can't make them until he's off all his immune suppressive drugs, they explained that he has to "borrow" antibodies from other people.  They help him fight off infection.
While we were waiting for the IVIG to be done, we took a walk down to radiology for an x-ray of his lungs. This was a little scary to me considering that it's flu season and any kids with respiratory problems are probably passing through radiology for chest x-rays.  He wore his mask the whole time and I didn't let him touch anything and we got out of there as quick as we could.
The x-ray showed that his lungs are "slightly" better than they were at the last one.  We were glad to hear that they aren't any worse. 
Dr. decided that the 10mg just isn't enough to make a difference so he increased his dose to 40mg.  
At 40mg, we saw a great improvement and now I'm happy to say 4 weeks later, still at 40mg, Jacob isn't needing oxygen at all through the day and any time he's awake.  We keep him on the oxygen while he's asleep just to be safe.  When I check him while he's sleeping though, he doesn't get too scary low. 
The yucky part about 40 is that he still has all the symptoms of steroid side effects.  He has a hard time sleeping at night and staying asleep, his joints ache and his legs and ankles hurt pretty bad and he's got a bigger appetite again.  His swelling has gone down quite a bit, but he still sure doesn't look like himself yet.  Next week, they will talk about maybe beginning a slower taper down from 40.  Probably 5 mg at time instead of dropping 10mg each week. 

Saturday, February 4, 2012

Good times

Jacob had a GREAT day today.  First of all he woke up at 8:00 in the morning (never happens!) and went to REI with me and Josh to check out the big annual yard sale they had today. He didn't even get out of the car though because the crowd was way too big.  But hey, it got him up bright and early this morning.  He did take a good nap in the afternoon.  Then his friend Tom called at about 4 to invite him to the movies.
I just have to say, I am so amazed by Jacob every day.  This week was a rough one with the lung setbacks and having to go back on steroids.  I'm sure that Thursday and Friday's sleep all day days were his way of coping/moping about that.  But it was like today he just decided to get over it and get on with life!  He didn't let a little (kinda big actually) thing like having to lug around a big oxygen tank with him all day get in the way of doing what he wanted to do.  We took that oxygen tank with us this morning.  He packed it up and carried it like a complaints.
He was a little bummed about the fact that he used up that tank in the morning and had to take the big one to the movies though.  But hey, that didn't stop him either.  We just wheeled it into the movie theater with him and when the movie was over, the boys stayed and watched another one and then went back to Toms house to hang out for a while.
I think the whole thing was harder on me than it was for him.  Watching him walk into the theater with two of his best friends, hanging out with the guys, dragging an oxygen tank with him...well, that was rough to watch and I'll admit that the tears were obstructing my vision all the way back to my car.
I am so incredibly grateful for the good friends Jacob has.  Those boys didn't even flinch when he walked up with the tank.  They just walked off together like nothing had ever changed.  I know it's hard for them.  They love Jacob and they would probably be together every day...the whole gang of them. But there's so many things that Jacob can't do with them yet, so we don't see the guys as often as he'd like to.
He can't be in big crowds so on Toms birthday last month, he went to the party at his house and had a great time celebrating there and he even rode along with everyone to Airborne where they have wall to wall trampolines to bounce's a blast.  But, when he got there, he hung back from the crowd and waited till I got there to take him home.  There were way too many kids in there and he knew that was just too risky for him with a weakened immune system.  A simple common cold would land him in the hospital for at least 2 weeks and he'd probably be spending that in the ICU with breathing machines because his lungs couldn't handle a cough right now.  It just wasn't worth the risk.
He can't skateboard, snowboard, ride bikes and going to school is out of the question this year.  Pretty much the only thing he can do with his buddies is to go to the movies for an afternoon show, not in the evening when it's crowded and not on Friday or Saturday night shows...even more crowded.  He has to wear his mask if he's in a crowd or when there's little kids around that could have runny noses or anything he could catch.
But, with all those restrictions...I have to say that he is so incredibly blessed to have a group of friends who love him unconditionally and can just take some time away from other things they could be doing to hang out at the movies with Jacob or just hang out in his room for a while playing video games, joking around and just being guys.  They really have no idea how much it helps him and how important it is for him.  Those times with his friends are probably the best medicine of all.

Thursday, February 2, 2012

Spoke to soon

Well, I spoke too soon.  He can't stop the steroids after all...we're back to 10mg per day because his lungs "rebounded" as they say.  Apparently, if you taper them too fast or if there's even a tiny bit of inflammation left anywhere when you stop the steroids, the inflammation comes back real bad, real quick.  So, he took that last dose on Sunday.  None on Monday or Tuesday.  By Wednesday, we saw some trouble.  Actually, it was Tuesday night that I started to worry.  As he was trying to get to sleep, I put him on the pulse/oximeter to watch him through the night.  His oxygen was dipping pretty low.  He normally sats around 94 when he's still awake without oxygen on and that is really good.  As he falls asleep and his breathing slows, he would dip to the high 80's like between 88 - 91 while sleeping...which is why he wears oxygen all night.  Well, he was dipping like that while he was still awake and even got down to 87.  He put on his oxygen and went to sleep.
By morning, things got a little worse and he was dipping like that with the oxygen still on and running.  When he woke up he was so tired and had a headache but we had a clinic appointment at 12 so he had to get up and get in the shower.  By the time he got out of the shower (didn't wear oxygen in the shower, never needed to), his lips were blue.  I took one look at him and said, Jacob you look blue, let's check your levels, and I put him back on the oximeter.  He was 67 and dropping fast!  He plopped down on the bed and said he just had to lay down, "I'm so tired mom" he said. I checked his toenails and they were grey, his fingernails were white and no blood return when I pressed on them.   He got down to about 64 and then started to climb again but couldn't even get up to 80 without the oxygen on.  I was freaking out by now.  We turned the tank up as high as it can go and watched his O2 levels climb quick and soon he was back up above 90.
I packed an oxygen tank in the car and packed my bags for the hospital.  I was sure he was going to be admitted yesterday and we'd be spending the night in ICS again.
Well, we got to the clinic safely and did some testing on the way there with him sitting up in the car and breathing deeply.  He was able to keep his levels above 90 on his own if he took deep breaths and let it out slowly like a whistle.  When we got to the clinic, they checked him and he went from 87 - 94 then 93, 92, 91, 90 right before she took the oximeter off his finger.
So we told the Docs about our "episode" that morning and they decided that he would have to go back on the steroids for another month or so and then we'll try to taper from 10 down to 0 more slowly.  Apparently they make .5 and .1 mg prednisone tablets so we'll be doing some of those on the way back down ...and praying that we get every last bit of inflammation fixed before we have another "episode".
Well, the good thing is that 10mg is not that much and it's not dangerously high levels. Hopefully he will still be able to lose some of the swelling and start looking more like himself over time, it's just going to take a little longer now.