Wednesday, May 2, 2012

Back at the Hospital

We spent the night in ICS at the hospital last night after 5 months of being at home. We have felt so blessed to not have to come back for such a long time and coming back here just brings a flood of emotions. Just as I was starting to really see the light and beginning to feel somewhat like a normal family again. Now, the memories come back to me and I’m reliving so many of those feelings we had for the 7 months we lived here. It was so strange waking up in this room again that feels so oddly familiar. I can only imagine how it feels for Jacob. He was so upset yesterday when I broke the news to him that they wanted him to come back in to be admitted to the hospital…

We’ve been watching him closely for the past few weeks as we have been tapering his steroid dose down ever so slowly.  The docs told us that around the 10mg stage, he would either stabilize or if we were going to have any trouble, that’s when we would see it.  Well, we’ve been getting some trouble now that he’s been at 10mg for over a week. Over the last few days, his oxygen levels have been trending down lower and lower causing him to need more oxygen.  On Sunday, I noticed he just didn’t look so good and I can usually tell by the color of his face, cheeks and mouth if his oxygen is low.  I checked him and his saturations were in the low 80’s.  Being that he was awake and up & walking, this was very unusual.  We got some longer tubing on his oxygen machine and hooked him up so he could still get around the whole house and called the doctor.  Being low on oxygen during the day is not normal for him.  She said to just watch him for a few days and call back if he gets any worse.  Well, he got worse and on Monday night when I went to check on him while he was sleeping, his saturation was right at 90 while he was sleeping, but he was already using 2 liters of oxygen and should have been higher.  Within a few minutes it dropped below 90 and the alarm started.  It woke up Joshua so he came upstairs to tell me and when I went back down, it was going between 84 – 86 and still on 2 liters of oxygen.  So, I checked all the lines to be sure the thing was working and then watched him some more.  He never got close to 90 again.  Well his oxygen machine was already maxed out….it only goes up to 2 liters, but he needed more.  I took him off the machine and connected a tank for him.  The tanks can go up to 5 liters, but they run out quickly at a rate like that.  I tried 3 liters, but that still wasn’t enough to bring his sats up, so we went to 4 and that worked.  4 liters of oxygen! That’s crazy, he’s never needed that much even when he was in treatment and had pneumonia.  I decided to sleep on his couch and watch him.  The whole thing started at 4am. By the time I got his oxygen stable, it was now 6 and I had to set an alarm for 8:30 to be sure I would remember to check the tank.  They only last 2 ½ hours running at a rate that high.  

I waited until after 8 and called the doctor.  By the time they called me back around 11, he was on his 3rd tank of oxygen and the doc just said, “we need to admit him, how soon can you get him here?”  So, I started packing.  Who knows how long they’ll keep him. Maybe just watch him for the night…but I don’t know what’s going on in his lungs so no telling how long we’d be there.  I didn’t bother telling Jacob until he was awake and I was ready to go…he didn’t sleep so well either all night.

So we checked in to room 4415.  Boy, I really think these rooms are getting smaller! How in the world did we do this for 7 months? Once we were settled in, the docs came for a visit and let us know their plan.  They set him up for a chest x-ray and an MRI, but before that, they stuck a hose down his nose to suction out some mucous and have it tested. Just to be sure he didn’t have any kind of virus that could be causing the problems. …yuck! Jacob did not like that.  The chest x-ray of course was to take a look at his lungs.  The MRI…is for his legs.  He’s been having a lot of pain in his knees and ankles, so they decided to take a look and see if the steroids have damaged anything.  We knew that steroids could cause problems with his bones, but it was just another one of those “wait and see” situations.  After he was done with all the tests which took the whole afternoon, we settled back into the room for the night, put on a movie and well, we had a little slumber party!  I’ve never seen Jacob be so much fun when he’s been here. He used to always just sink down into his covers, tell me to close the shades, turn off the lights and he'd try to go to sleep.  He still does that when the docs come in.  He’s amazingly good at putting himself to sleep whenever they come in and want to talk about things...haha.  Even I can’t tell if he’s faking it most of the time.  This time has been different.  He’s been cracking jokes, thinking of pranks he wants to play should his favorite nurses come to visit and just goofing off! He’s even been sweet to his nurses and his tech saying “please” and “thank you”.  His tech last night actually called him a teddy bear! It’s really nice actually that they can get a glimpse of the real Jacob.  He was such a grouch through all his months of treatment and so depressed and it made me sad that they maybe didn’t think he was a very nice kid.  I can’t wait for him to be really all better and start looking like the handsome young man that he is and able to be himself again.  We stayed up late laughing at crazy jokes he wanted to play on everyone, watching movies and old episodes of “Lost”.  We had a few tickle fights cuz I tickled his feet just to get a laugh out of him while I was rubbing his ankles and knees.  He promised to get me back bad sometime when I least expect it…like when I’m sleeping.

So here we are, it’s morning and as usual, Jacob is still sound asleep at almost 11am.  He slept right through the doctor’s visit this morning when they came to tell us the results from all of yesterday’s tests and give us the plan for today.

The x-ray actually looks better than the last ones they have done and they think there is some improvement there. So what’s going on then? The nose culture tests have been negative so far, but they are doing some more tests and those will take a few days to get back.  I don’t think there’s anything there though since he hasn’t had any symptoms at all like a runny nose, cough or fever.

The MRI, on the other hand, had some bad news.  The steroids are taking their toll and that explains the pain in his knees.  It always amazes me how well these doctors know how to break bad news.  He’s got yet another crappy diagnosis, another new “condition”, trading one disease called cancer for a set of new diseases and conditions that may not kill him, but they'll be obstacles for the rest of his life.  They called it Osteo-necrosis.  Basically, it means the steroids have weakened his bones and cut off some of the circulation causing an area at the base of his femur to die.  Yes, I did say “die”! Can you believe that?! She ever so sweetly said, “There’s an area that we can see from the imaging that the bone is actually “dead”. So, we’ll get him an appointment with an orthopedic specialist.” What the heck does that mean?  Does it mean he will always have pain in his knees? Will he be able to run again? Play sports? What about growing? He still has a lot of growing to do…how can his bones grow if they are “dead”!?  My mind is just reeling now with all the questions. 

Cancer SUCKS!  …sorry, I know that’s not a nice word, but I can think of a lot of other words that I just won’t say.

The plan for today is to have some more tests done.  First, a Pulmonary Function Test (PFT) that tests how well his lungs are working, their capacity and how well and how fast they are able to get oxygen from his lungs into his bloodstream. Next he’ll get an Echocardiogram.  This is a test that is done with ultrasound equipment on his heart.  They basically measure how well his heart is functioning.  His blood pressure has been running pretty high lately so I’m curious for the results of that test.  Although we had the bad news of his lung damage, I’ve been happy to know that his heart didn’t get any damage through treatment.  And, though I want to know the results, I just get so much anxiety worrying about what they are going to tell me next. With the good results on the x-ray and his last CT scan which also looked better…I guess I’m a little scared they are going to say his heart is struggling too.  They have warned us that being low on oxygen, causes more stress on the heart and this morning, they explained how the heart and lungs work together to get oxygen to the body.  Please, please pray that his heart is still doing well! I just don’t think I could handle another “condition” newsbreak if that’s what is causing his oxygen levels to be so low.

Can I say this one more time…?  Cancer STINKS! (was that better?) This is such a nightmare.  I just want to wake up and somebody tell me it was all some crazy stupid year-long dream!  I actually did have a dream a couple weeks ago where Jacob walked into my kitchen and he was completely better.  I looked at him and thought, how far he has come…you wouldn’t even know from looking at him all that he’d been through.  His hair was blonde and straight…and long again.  He was built like the strong young man that he was before all this and he just looked like my Jacob again.    I want him back.  I miss him.  I just want my boy back!

If all his tests look good today, we’ll be going home tonight.  We can watch him at home and keep the docs posted if anything changes…They’ll order us a new condenser that can make more than the 2 liters his machine does now and get him a portable tank that he can carry around with him everywhere more easily than the tank he slings on his shoulder now (and never uses cuz it’s a pain to haul around).  They’ll refill his meds and let him start taking Aleve or Ibuprofen for the inflammation and pain in his knees and get him an appointment with an orthopedic specialist.   …yay  (that was yay for going home, not all the rest…bleh)


  1. Oh, Liz, we are praying for you guys. I cannot even begin to imagine what you are going through. Steroids can be so awful (beneficial, but awful) and Yes, there is no other word for it, Cancer SUCKS!!! HUGS from the Susman's. WE are thinking of you and hope Jacob can make a full recovery.

  2. Ugh! I am hating cancer too! I should have given you a big hug when we were watching that bell ring, I couldn't even handle watching it ring a couple of days before that because Ty was doing so badly. I'm glad you guys got to go home, hope he is improving.


Thank you so much for reading our story. It means so much to me that people care enough to follow us and share in our journey through Jacob's treatment and recovery. Please know that I read every comment and I treasure every one! I may not have time to comment back, but I will keep writing and sharing our story.