Keeping his scar dry while taking a bath!

Hi everyone, it’s been a little while since I last did an update and a lot has happened since then.  I know a lot of you saw our brief Facebook posts while we were in the hospital, but I’ll try to give you all a few more details in this update. Sorry in advance that this is a long entry.

On November 4, JJ went in for a cranioplasty, which is essentially a surgery to repair the skull defect that occurred as a result of his tumor removal in March.  In our last update, I went into detail about why he needed the surgery, but basically it was just because the bone was thinning and wasn’t properly attached to the rest of his skull, which was allowing fluid to seep through.  Anyways, we went to the hospital expecting a fairly routine procedure (as if anything that has to do with the head is routine!!), hoping that we’d be in and out in a few days. 

JJ went in for surgery at 8 AM and was scheduled to be under anesthesia for about 6 hours.  Throughout the morning and afternoon we held vigil in the cafeteria, waiting for the nurse to call us with updates every 2 hours.  Everything went exactly as planned and in the late afternoon, JJ was moved from the operating room directly to his isolation room in the ICU.  Dr. Sun, the neurosurgeon, came to tell us that the surgery went smoothly but that JJ had actually had about a 2 inch triangle of skull that was completely missing. To repair this, he scraped some bone off the thick part of JJ’s skull and implanted it with a piece of mesh to fill up the gap.  Using his own bone rather than synthetic is definitely preferable, as the body more readily accepts it.  He also used a bunch of tiny titanium screws or plates (I really should know this stuff…) to connect the floating portions of bone to the rest of the skull. 

When JJ woke up from anesthesia, he was groggy and cranky, but essentially fine.   That next day he was a little sluggish from the pain medication, but had a very good day laying in bed and playing with his cars.  That evening he went to sleep around 9pm, which was great since he had been up until 3am the night before and I was exhausted!!  Around 11pm Jon headed out to his truck to sleep and I crashed almost immediately. 

Around 1am, JJ sat up in bed, looking wide awake, and started asking “where’s daddy? where’s daddy?” I didn’t answer him because I was hoping he’d go back to sleep.  A couple of minutes later our nurse came in and said that she thought that his oxygen monitor was coming off because his numbers were erratic (she had seen them on a monitor at the nurses station).  It did look like it was coming off (its like a band-aid that wraps around his toe), so she started to adjust it.  I was sitting up and watching her, but I started to notice that JJ looked very spacy and was sitting very still, which he never does when a nurse is touching him.  He was staring off into space with a blank look on his face, so I started saying his name, trying to get his attention.  He wasn’t responding even though he was sitting up, but the next thing I knew, his face and lips started turning blue.  I told the nurse that he wasn’t breathing and we both started to panic.  I asked her what she wanted me to do and when she didn’t answer me quickly enough, I jumped over the top of the bed and hit the code blue button.  The ICU doctors and nurses flooded our room, and quickly got an oxygen mask on him.  He started fighting them off, trying to take off the mask; this was a good thing because it meant that he was breathing.  As soon as I saw that he was breathing, I immediately called Jon and told him to get up there.  Even though he was breathing again, he was still acting spacy.  The doctor said that he was acting very typically post-dictal, which he then informed me means “after a seizure”.  I couldn’t believe that he had had a seizure, it wasn’t anything like I had envisioned a seizure to be.  I assumed a seizure would involve a lot of shaking and convulsing, but it was incredibly still and quiet.  I can’t even imagine what would have happened if I hadn’t been right next to him and if he hadn’t been closely monitored. 

At that point we took him down to radiology for a CT scan to make sure that his brain looked ok.  He was still acting strange, kind of listless and still a little spacey.  On the way back from the CT scan, he just kept staring up at the lights on the ceiling of the hallway.  When they got him back into his room, he was sitting up on the bed and he kept saying “Where’s mommy? Where’s mommy?” even though I was sitting right in front of him.  This broke my heart and scared the crap out of us at the same time.  Just a minute or so later, he started staring off into space and was unresponsive again.  His monitor showed that he had stopped breathing again, so the doctor immediately put the oxygen mask on him again and said he had had another seizure.  Once again, he started trying to yank it off, fighting the doctor every time he tried to put it back on.  After that, he seemed to come around and started acting more like normal JJ.  He was asking for specific Cars toys(which thrilled us because it meant that he hadn’t sustained any super serious brain damage), and wanted to watch his iPod.  He was maneuvering through his Ipod like he always does, looking for specific youtube videos.  The doctor was very impressed and said that he was glad he got to witness him doing this because it showed him using his fine motor skills, as well as showing that he was acting normally. Even though he was laughing and identifying different cars on the videos, something still wasn’t quite right.  He’d laugh and then he’d start making a repetitive noise, like he was saying “dit dit dit dit dit”. Jon and I recognized that this wasn’t something he normally did, but before we could point it out, JJ threw up, spaced out, and stopped breathing again.   

Jon and I sat in the corner of the room, watching the doctor resuscitate our son.  Throughout this whole 9 month nightmare, this was by far the scariest night we’ve ever had.  We really didn’t know what was wrong with him and watching the 2 doctors and 8 or so nurses all stand around the bed was like something out of a movie.  The doctor was yelling orders to the nurses in what sounded like another language in order to prepare to put a breathing tube down JJ’s throat. They asked us if we wanted to leave the room, but there was absolutely no way that was going to happen.  JJ looked so tiny and helpless laying in the bed unconscious with the doctor standing over him, with the most intense look of concentration I’ve ever seen.  It was heartbreaking and completely terrifying.  After what felt like ages, the doctor got the breathing tube in and JJ started to stabilize.   I was watching the doctor make notes afterwards and his hands were shaking like a leaf even though he had been steady as a rock while he had been working on jj.  I assume his adrenaline was pumping like mad…I know ours was!

After the doctor was done, the nurses put restraints on his arms to keep him from pulling out his breathing tube if he started to wake up.  The plan was to keep him unconscious for about 18 hours and monitor his breathing and his brain waves (they had put about 50 electrodes onto his head).  For the next 18 hours, there was always a nurse in the room watching JJ.  It was 4:30 am (and of course the time changed that night so we had an extra hour of being awake during this ordeal) so Jon and I took turns sleeping for an hour at a time in the fold out chair while the other one slept sitting upright in a plastic chair. 

The next evening, the doctors believed JJ was stable enough to take out the breathing tube and let him wake up.  About 20 minutes of being very groggy, the JJ that we know and love was back.  We were incredibly relieved that he seemed to be normal.  With the nurse still in the room, that night I slept like a rock!! 

The next day was total and complete drama.  I won’t go into great detail, but needless to say, the ball was seriously dropped in terms of JJ’s care.  Because JJ is post-transplant and has no immune system, it was completely mandatory that he was kept in isolation, away from all the germs in the ICU.  Anyway, it was decided that another kid needed the isolation room more than JJ did and he was kicked out into the general part of the ICU.  I called everyone I possibly could and no one would do anything.  All of these same people had assured and promised me that JJ would absolutely be kept in isolation, but suddenly no one would do anything.  They started saying that his immune system is fine (it isn’t and they knew that because they had run immune tests the day before and said that it was still too immature to do any further testing), and they said that he didn’t even need to wear his mask (wrong again…).  We were besides ourselves because no one was listening and the doctors were actually being very rude, condescending, and antagonistic.  Thankfully JJ’s social worker witnessed the treatment that we were receiving and gave me the information on who needed to be contacted in order to report this.

After spending 24 hours in the general ICU, neurosurgery came to check on JJ and was absolutely appalled that he had been taken out of isolation.  They started demanding that he be isolated and when they were unable to find him a bed, they decided that it was safer for JJ to be discharged than to keep him out in the open.  We were extremely relieved.

JJ did absolutely fine once we got home.  He is now on anti-seizure medication and will continue to take it for at least 3 months.  He had an MRI on Wednesday that looked clean. The neurosurgeon looked at his skull yesterday and wants to see him again in 2 weeks.  His head is still squishy, so he has to wear a thing around his head that looks like a tight mesh sweat band.  Hopefully his body will start to absorb the extra fluid or else we might have to start seriously considering having a shunt put in.

Today we met with the neuro-oncologist who informed us that he wants to put JJ on oral at-home chemo.  He will be taking one drug (vorinostat) 2 times a day for 14 days a month and he’ll take a second drug once a day, four days a week.  The second dose is actually high-dose Accutane, which apparently they use a chemotherapy drug in addition to curing acne.  He’ll be on these drugs for a year, but when they are used after the initial treatment and transplant, they are supposed to be successful at helping to keep the cancer from coming back.  While we know that there are absolutely no guarantees, we will do whatever it takes to help JJ stay cancer-free. 

Again I apologize for the length of this update.  I felt like everyone really needed and deserved to know what was actually going on.  It was hard to truly express what was happening via short posts on Facebook, so I figured I’d use the blog to fill in all the blanks.  Thank you to absolutely everyone who sent us positive messages and support.  It was really helpful in terms of keeping our spirits up during this highly stressful time.  JJ is a little superman and is absolutely our hero.  He’s been through more than anyone should have to experience in ten lifetimes.  He is the sweetest and funniest little guy and we are SO grateful that we have him in our lives.  He’s a champion.