Day by Day

I’m having a hard time keeping track of what day it is and what happened when and haven’t really processed all that has happened, so this post is for me. 

November 21, 2010 (Sunday)

This all began on Sunday, November 21, 2010.  Jude, Levi and I were outside playing hard.  We were sledding in the front yard.  I was getting a good workout pulling Jude and Levi on the sled or carrying Levi while pulling just Jude.  Sometimes Jude got a good workout by pulling Levi.  We also had a big snowball fight and chased each other around and around.  I got the feeling that Jude could have playing outside all day (like normal), but he didn’t fight me too hard when I told him it was time to go inside and get him warmed up with some hot chocolate.  When we got inside, I told him take off his boots and his coat and he managed to do so without any problems.  He needed help with his snow pants, but that’s not unusual.  It wasn’t until I set him down on top of the tall kitchen table (bad Mommy — glad he didn’t fall right off) to drink some hot chocolate that I noticed something was wrong with him.  For 10 minutes or so, he kept saying, “Mommy, um…Mommy, um… .”  At one point he even put his pointer finger to his temple in this really cute way that he likes to do when he’s thinking of something clever.   Maybe he said, “I want to tell you something.”  I kept saying, “Yes, Jude, I’m listening to you.  What do you want to tell Mommy?”  Little did I know that his repetitive speech was one of the symptoms of the seizure that he was experiencing right before my eyes.  He could not formulate a sentence, and after 10 minutes of saying “Mommy, um, ” he went completely silent and I knew there was something wrong with him.  His eyes were glued open and looking off to the right.  The same thing had happened to him in September and he slept it off.  I thought he was tired since he had missed his nap or that he was dehydrated or had heat stroke because I overdressed him for our sledding/snowball fight.  I tried to get him to take a nap.  Luckily, he would not got close his glued open eyes.  He threw up while laying on his back and was totally non-responsive, but breathing.  I called the nurseline and the nurse recommended calling 911.  I thought that was an overreaction and didn’t take the advice.  A few minutes later, Andy convinced me to that we should drive Jude to the ER at Children’s Hospital, just as a precaution.  He was staring off to the right side on our ride and still non-responsive.  I guess I told Andy to call 911, but I don’t remember telling him that.  I talked to 911 and they asked if they should send an ambulance.  I thought it would not be necessary to send an ambulance since we were half a mile from home and only 15 minutes from the Children’s Hospital.  Thankfully, Andy had more sense than me and decided an ambulance was necessary.  We pulled over and waited for what seemed like forever for the ambulance.  The police beat the ambulance and gave Jude oxygen and guessed that he was having a seizure.  The ambulance wanted to bring Jude to North Memorial, since that was the closest hospital, but I suggested Children’s Hospital and was glad I did since he would have been transferred to Children’s anyway.  I accompanied Jude in the ambulance and he remained non-responsive with his eyes glued open and fixed to the right.  Arriving by ambulance allowed us to bypass the long ER waiting line.  They had a whole medical team waiting for us.  They suspected he was having a seizure and administered seizure medication.  They immediately put Jude to sleep and put in a breathing tube.  When they had him stabilized, they gave him a CAT scan.  On the way back from the CAT scan, I asked the doctor how it turned out.  He said that there was something he wanted to talk to us when we got back to the ER.  Of course, I knew that was bad news.  I figured the seizure had done some permanent damage to his brain.  But, it was almost the worst news we could have imagined.  The doctor told us Jude had a brain tumor.  He was brought to the pediatric intensive care unit (PICU), where he was sedated for the rest of the day.  We learned something that I found strange — that all tumors in the brain are considered cancer, even if they are benign.  We were hoping the tumor would end up benign and they gave us some hope for such an outcome.  Andy, Levi and I stayed in Jude’s room for the night, where Jude had a nurse assigned to him alone.  I was strong today and didn’t cry too much until the middle of the night when everyone else was sleeping.   I tied up some lose ends at work in the middle of the night and managed to get about 1-1/2 hours of sleep this night.

My initial thought after hearing that Jude had a tumor was that I was going to lose him and that it would somehow all be for God’s glory.  My reaction was mostly because I had a premonition of his death the same morning that this all began.  On the morning that this all happened, a horrible thought that Jude was going to die came over me so strong, that I actually shed a couple tears (which is not normal behavior for me).  On top of that, the day before this all began, Jude had asked me why God wanted Baby Titus (the baby I miscarried after Jude) to come live with Him, instead of him and asked if that meant that God loved Baby Titus more than him. 

November 22, 2010 (Monday)

This was probably the toughest day for me.  I woke up with puffy eyes from my middle of the night crying.  Jude was sedated all day with a breathing tube in his mouth.  He needed to be sedated for the MRI.  The MRI would give us better pictures of the tumor.   The nurses told me that while Jude couldn’t move or talk and had his eyes shut, that he was awake and could hear everything.  I wasn’t sure if Jude was still the same kid post-seizure.  I was afraid that he was scared, wondering why he couldn’t move or talk and wondering where he was.  It was so difficult to see my precious potty-trained boy laying there in only a diaper and nonresponsive and wondering if he’d ever wake up and be the same kid.  I was determined to reassure him, even though I was having such a hard time holding back the tears when talking to him.  I spent the day at his bedside, talking to him, singing all the songs he would find familar and reading to him.  Andy found it too difficult to talk to Jude and said that all he wanted for Christmas was his boy.  Although I understood where they were coming from, I was irritated that Jude’s room was full of family members but they were mostly just talking amongst themselves and not talking to my poor boy, just because he couldn’t talk back.   Finally, it was time for the MRI.   The MRI gave us some good news that the cancer had not spread to his spinal cord.  They gave us hope that the tumor was benign.   Even after the MRI, the day still dragged on since Jude was still sedated.  All the doctors were attending to an emergency down the hall and we had to wait many, many hours for a doctor to be available to oversee the nurse remove the breathing tube.  A couple times, Jude woke up, with the breathing tube in his mouth and was choking on it.  I had to help wrestle him down with several others while they put him back to sleep.  It was totally awful to see my boy suffering like this.  Finally, a doctor was available at about 10 p.m.  They cut down on the medicine that was keeping Jude asleep and he woke up in a half hour or so.  They had to wait for him to be awake before they removed the tube, for some reason I don’t really understand.  The poor kid didn’t like all the cords and he ripped out one of his IVs in his hand.  Unfortunately, since they didn’t remove the tube until almost 10 p.m.,  Jude spent the rest of the night wide awake.  Andy and Levi went to sleep and Jude and I stayed up almost the entire night, snuggling in bed.  He was not himself at all.  He was crying all night in my ear.  At one point, he said, “You are not my real Mommy.  You are Grace’s Mommy [lady from church].”  He had been poked and was all connected to wires and thought we were there to punish him for something bad he had done.  He wanted all the tubes off and wanted to go home. He thought we were there to punish him for something bad he had done and he promised us not to do it again if he could go home. It is awful seeing him in such pain. His speech was really mumbly, but he was still able to read and spell. His eyes were droopy and I was hoping it was just temporary.   I was thankful that Levi is still breastfeeding so he was a rare exception to the rule against kids younger than 6 years old in the PICU.  As a breastfeeding mom, I also had access to free milk and juice.  I like free stuff, so that was fun.  But, I was so preoccupied with Jude and thoughts about him, that I usually forgot to eat and drink enough and the free refrigerator wasn’t at the top of my mind. 

November 23, 2010 (Tuesday)

We just hung out today.  We couldn’t have surgery because the the operating room that contained an MRI in it that the surgeon wanted, was not available until Wednesday.   The team of doctors were optimistic so I was pretty optimistic today.  We told Jude that there was an owie or a thing that didn’t belong in his head.  We told him that there was nothing he did that caused the owie and the owie was not the result of anything that anyone else had done to him.  It just happened and we don’t know why it happened.  Dorsey delivered a wagon full of food.  We ate and shared some good with some other families in the PICU and had enough leftovers that I had enough to eat 2 sandwiches a day, so I didn’t have to leave Jude’s side and even had some extra food to bring home.  Dorsey also delivered a big bag of toys for Jude.  Jude was so happy that he declared, “[t]his is my best birthday ever.”   Family came in and were a big help entertaining Levi.  Levi, who is taking steps, but not quite walking, struggled sometimes since we didn’t want him doing too much exploring of the dirty hospital.   I slept in the hospital bed with Jude, with an ear plug in one ear to drown out some of the noise from the monitors.  Everyone was trying to talk us into sending Levi home with a grandma.  Andy was happy to oblige.  I wanted to use this experience to draw our family closer together and wasn’t willing to part with my little Levi.  In the middle of the night, a new nurse noticed that one of Jude’s IVs had come out of the vein and dumped fluids into his hand, causing it to swell up really big.  Poor kid.   I was so glad she noticed that.   He had to get a new IV in the middle of the night.  It was always so sad every time he got poked.  He kept asking me why I let these people hurt him and why I didn’t pow them. 

November 24, 2010 (Wednesday)

We got up early to get Jude prepared for surgery.   Jude rode in a little red wagon down to surgery.  The anestheologist gave Jude some “happy juice” and Jude fell sleep while I was cradling him in my arms in a rocker.  I carried him that way into the operating room and placed him on the operating table.  I would have stayed with him during the surgery if they would have let me.  The wait during the surgery wasn’t nearly as bad as I expected.  I was feeling anxious, but overall pretty calm.  We were expecting the surgery to last a minimum of 4 hours, but easily 6 or more.  The surgery was supposed to start at 8:30 a.m.  They called at 9:15 or so to say they had just gotten started.  They promised to call every 30 minutes or so.  Pastor Carl from church was there, chatting with Andy, my mom, my dad and me.  The time flew by.  I was shocked when I answered the phone for our first half hour update and they nurse said that they were “closing him up.”  I thought something must have gone wrong and they must have realized that they couldn’t operate for some reason.  I couldn’t believe they had finished the entire delicate surgery so quickly.  But, it really was finished.  It was amazing.  They just needed to do an MRI as another double check that the entire tumor was removed.  The surgeon, who is the best in Minnesota and one of the best in the world at removing tumors from the brain, isn’t a man of many words.  He stopped by to say that it had gone well.  Of course, I had lots of questions, but all I could get out of him was that it had gone well and that I “would be happy” and “there is nothing else to say.” 

They called Andy and I up to the PICU to see Jude after the MRI.  I wanted to run.  Jude was just starting to come to when we arrived.  They removed the breathing tube and his first words were “I want water.”  To hear him speak was just as exciting as his first word ever.  I quickly went to work quizzing him down, testing his cognitive abilities, memory, etc.  I was thrilled and confident he was the same kiddo as he was pre-surgery.  Totally amazing and wonderful!  He would repeat his request for water in various variations thousands of times over the next 3 days, since he ended up developing Cerebral Salt Wasting Syndrome.  They wanted to give him lots of sodium to dry out his brain and it made him so thirsty.  But, I was allowed to only give him 25 mL of Gatorade every half hour.  Jude was desperately thirsty all day.  Before they explained to me the consequences of giving him fluids (circulation could have collaped or brain could have swelled etc.), I was really irritated at them for not letting me give him more drinks and often gave him 30 mL of liquid instead of 25 (which was really only a few extra drops) because I felt so sorry for my dehydrated little boy.   I slept with Jude again in his hospital bed.  He was right in the middle of the bed pretty much the entire stay in the hospital, so I  had just a small crack to wedge my body into.  Thank goodness for the bedrails!  I didn’t want the poor kid to wake up in the middle of the night and be scared and I wanted to be sure I could be right there to attend to him in the middle of the night.  I was right there to help him go to the bathroom in the middle of the night several times and I think because of this, he remained potty trained unlike most kids of his age who have a similar surgery, I was told by a nurse.  Helping him go to the bathroom was quite a job since there were so many cords to worry about and he had an IV stiched with 2 stitches into his neck, another IV in his hand, and yet another IV in his foot (that replaced the other IV that he ripped out of his hand).  He also had sensors that were stuck all over his body and connected to monitors.  I started hearing stories of other kids in the PICU and became grateful that we didn’t have it as bad as them. 

November 25, 2010 (Thursday)

Today was Thanksgiving and we were so thankful that Jude was alive and on the road to recovery.  I still hadn’t breathed a sigh of relief because we didn’t have pathology results.  Jude is crazy about the movie Astro Boy.  He had never seen it until the hospital and has now seen it a dozen or so times.  He has also passed the time by watching Star Wars and playing Kung Fu Panda on the Xbox 360 that the hospital had in his room.   Jude never complained about pain, but we had them give him some morphine today early this afternoon and that was the last pain medication he has had.  So, just a day after major brain surgery and the little guy was all done with pain medication. 

November 26, 2010 (Friday)

Jude was still desperately thirsty today and I was still only allowed to give him 25 mL of Gatorade every half hour.  Interesting that the hospital recommended Gatorade, but didn’t supply it.  Thankfully, Andy’s parents made a couple trips to buy us Gatorade for Jude and also were great about stopping by the house to pick up clothes and things for us.  Jude’s 2 best friends, Annie and Kyle, who are both 6 years old came to visit.  They brought some more Gatorade and some salty popcorn that was perfect for his diet and raced Jude on cars down the hallway.  Jude was just thrilled to see his friends.  He was so thirsty though and cried and whined more than I would have liked, given that his friends were over.  At one point today, Jude raced his race in our room and got a cord that was attached to the IV that was stitched into his neck stuck.  It was awful to watch, but I was relieved when the nurse said the IV was intact.  I was relieved that my baby didn’t need to get poked again.  My aunt and 3 cousins stopped by with a cool Spider Man flashlight that Jude showed all the nurses when they were examining for the rest of his stay.   W e got some bad news today that the tumor was malignant.  We were still holding out hope that it was benign.  But, the good part of the news was that the pathologist believed that the tumor was a Type 2 Ependymoma.  For a Type 2 Ependymoma, the only necessary treatment is removal of the tumor — no radiation or chemo is required.  But, given the location of the tumor, it is very rare for the tumor to be Type 2 instead of Type 3.   I believe the oncologist said that given the location of Jude’s tumor, they know of only 12 or so cases of Type 2 in the U.S. and Canada.  Usually the tumor in Jude’s location is Type 3, which is really bad.  Type 3 is a more aggressive cancer that requires radiation.  Surprising, Mayo doesn’t have the right type of radiation treatment center and we’d end up having to move out of state for 6 weeks for radiation treatment.  The nearest center is in Indiana.  We were told that the risks of radation are secondary cancer and cognitive problems, like short term memory loss.  Also, hearing and vision problems can arise.  We are waiting for the national expert at Johns Hopkins who defined the difference between Type 2 and Type 3 to verify that Jude’s tumor is really Type 2.  We are expecting final word by Wednesday, but it could come anytime now.   Only after the final word comes and only if he verifies that it is Type 2, will I breathe a sigh of relief.  Even if it is Type 2, Jude will need MRIs every few months and then annually or so.

November 27, 2010 (Saturday)

The neurosurgeon stopped by and said Jude should act like he was at home today.  I’m pretty sure that he didn’t know how wild Jude is at home.  I joked with Jude that we should wrestle and play rocking boat (which is a airplane type trick that I invested and that is too wild for a kid who just had brain surgery).  Jude still had an IV stitched with 2 stitches in his neck.  He had another IV in his left arm.  He was still full of cords to monitor his heart rate and oxygen levels.  He raced on a car, Flintstones style, up and down the hallway since yesterday.  I had to race behind him with the tower of stuff containing his IV drips and monitors.  The doctors discontinued the sodium drip and allowed him to be disconnected from everything, except the IVs.  Jude prayed with me tonight something like, “Dear God, please let me go home tomorrow.”  I really thought that was a long shot and was worried that he’d ask me the next day why God didn’t answer his prayer.

November 28, 2010 (Sunday)

Today we were surprised when little Jude’s prayer was answered.  Doctors started stopping by and saying he looked great and that he was ready to move upstairs (out of the PICU).  Then the oncologist stopped by and said he looked great.  She wanted to know why he was still attached to that tower.  I said that he had refused to take his medicine orally.  Jude is incredibly stubborn, a trait that he inherited from both Andy and me.  Jude promised me that he would take his medicine if he got to go home.  I told the doctor that I was confident that I could get him to take his medicine orally if they let us go home.   Many of the doctors said they were fine with Jude staying in the hospital for a couple more days for observational purposes or they were fine with him going home.  We wanted to go home.  A whole team of doctors (the neurologist, the oncologist, the general practitioner and the intensivist all had to sign off on him leaving.  I spent a couple hours packing up our stuff, since I knew we were either changing rooms or going home.  It was so exciting to get to go home.  We stopped at the pharmacy at Children’s Hospital on the way home and picked up the watermelon flavored anti-seizure medicine that he’ll need to take for a year or so and also his antibiotic that he needs to take for a week or so because to clear up the infection in his lungs from when he swallowed his vomit during his seizure.  It was great to arrive home and I spent the rest of the night unpacking and doing 5 loads of laundry.  I was thankful that family was still over to entertain the boys while I raced around cleaning up the house. 

November 29, 2010 (Monday)

At home.  Waiting for verification of the pathology of the tumor.  Hoping for the best — that it is a Type 2 Ependymoma instead of a Type 3 Ependymoma.