One Step Forward, Two Steps Back

Dr. Answer To-our Prayers

May 3, 2012

After a late night due to scary episodes, Jayson finally crashed and slept for hours.  Our doctor’s appointment was at 9:00 AM, so we had to get up early.  I felt bad, but we had to wake Jayson up to get him ready.  Unfortunately, this triggered some episodes.  Mike had the day off, so the two of us got our many things together to go to the doctor—Jayson in his car seat, our oxygen in its cart, his feeding pump in its travel backpack, the pulse oximeter monitor, his diaper bag and my purse.  We got in the car and headed to the doctor with prayers in our hearts that this doctor was going to help us get answers.

We got right in and only waited moments before we the Special Care Pediatrician.  When he walked in I knew he was a good doctor.  I could feel it.  I have developed a sixth sense about doctors, and I knew I wasn’t wrong about this one.  He shook our hands and started talking about Jayson’s issues.  He knew symptoms, diagnoses, and dates.  He had studied Jayson.  Finally someone who took the time to look at his history.  He wanted to prioritize conditions and concerns, and started with his breathing issues.  I interrupted to tell him about his newly developed issue—seizure-like episodes.  He looked concerned.  Finally someone who cared.  He listened, I mean really listened.  He listened with his ears and his eyes.  His body language told me he was absorbed in what I was saying.  Remarkable.  He spun around in his stool and went to his computer and started typing things.  I told him I had videos.  He stopped and wheeled right back to us.  He watched them all.  He said, “Wow, that is concerning.  Those certainly look like seizures.  I know we were going to discuss breathing issues, but this is now at the top of our priority list.  Will you excuse me?  I’m going to go find a neurologist.  If I show the videos, perhaps we can get you in quickly,” and out he went.  Seriously?  This was a dream come true; this man was an answer to my prayers.  Finally someone who took me seriously and cared more about my son than his personal agenda and time.

He was only gone minutes, but in the meantime, Jayson had started to have some moderate episodes while Mike was holding him.  He came back quickly and said that the neurologist believed him and didn’t need to see the videos.  We were getting in for an EEG as soon as possible and we were going to be put on the “Fast Track” to get a neurology appointment as soon as possible.  I felt a massive amount of weight lifted off of my shoulders.  We were going to get some help.  Just then another man in a shirt and tie walked in and inquired about our schedule.  He was going to make the necessary calls to get us an EEG and an appointment.  Amazing!  This was VIP treatment in the medical world.  Finally someone was treating my son as if he were the most important person in the world.  He always has been to me.

The doctor observed Jayson’s episode for a few moments, and told us that he was going to help us get answers.  Things would be okay.  He said that this was top priority, but let’s also talk about the plan.  Next we were going to look at his breathing issues.  We already had a sleep study scheduled and a follow up ENT appointment.  He said he was close with our ENT doctor and asked him to pop in and say hi during our appointment.  He would be following up with our ENT to discuss results and the plan for possibly weaning oxygen.  Collaboration.  Team work.  It was all too good to be true.

The doctor then discussed Jayson’s swallowing issues and his NJ tube.  He informed us that we would likely be moving in the direction of a G-tube.  This tube is surgically inserted into the stomach and can go to the intestines.  The NJ tube is a temporary fix, and it does not look like Jayson will be ready to eat normally any time soon.  He also mentioned a Nissen, which is another surgical procedure to help with the reflux.  He said he would look into referring us to a Gastroenterologist so we could work on getting these things taken care of, but this was lower on the priority list.

Lastly, he was concerned about us as Jayson’s parents.  He wanted to ensure we had the help and support we needed to get Jayson’s supplies, occupational therapy, and even get out every once in a while.  A doctor cared about me.  ME.  The mother.  Unbelievable.  He asked the guy in a tie to come back and requested he look into respite care for us, so that we might be able to go on a date or do something special and still have a professional to care for Jayson.  He also asked for a social care worker to come down in a few minutes.  I was not certain why that was necessary, but I was grateful.

Suddenly, the doc backed away from his computer with “The Plan” and got a serious look on his face.  He said his job is to coordinate different doctor’s visits and specialists, but to also look at the big picture; he wanted to help us put the pieces together and make sure we weren’t missing anything.  He said he never likes to give discouraging news, but mentioned that all of this could be related to a syndrome Jayson may have that could really hinder his development.  We nodded our heads.  We were aware of this, and have been working on slowly digesting it for some time.  The doc paused, swallowed loudly, and continued, “Jayson has breathing issues and central apnea.  His brain isn’t telling his body to breathe.  He has swallowing issues which are developmental.  His brain isn’t developed enough to tell his body to swallow correctly.  He has developmental issues, which are related to the brain and now we have seizure-like activity which is related to the brain.  All of these things are managed through the mid-brain.  Looking at the big picture, it seems that Jayson has a mid-brain problem.”  I just stared and nodded.  The doctor sighed and continued, “Some prefer a name.  If you want to give it a name, you could call it Cerebral Palsy.  But you don’t have to give it a name.  There’s a condition that serves as an umbrella for all of these symptoms that can explain what is happening.  Jayson will most likely have some more difficulties.  He is likely to have physical and mental limitations.  We don’t know exactly what those are at this time, but I think it’s important that you are prepared for what may come.”  He looked uncomfortable.  My mind was running a mile a minute.  I had digested the possibility of Jayson having a syndrome, but never a brain problem.  I felt nauseas and dizzy, but I just nodded and said, “Okay.”  I looked over at my little boy and tried to hold it together.

He said he was going to get us a nutritionist to discuss Jayson’s feeds and find out how the appointments were going.  As he left, I wanted to say something to Mike, but didn’t know what to say.  We looked at each other, but had nothing to say.  We didn’t have time to say much because Jayson started to panic.  His episodes had progressed, and he was starting to cry.  Between episodes he’d calm down and nuzzle into Mike’s chest, but then another one would hit.  His body would stiffen and retract and flail around, his head was bobbing back and forth and his eyes were going in different directions.  He was screaming now.  My child doesn’t scream.  Was he in pain?  Was he scared?  Was he uncomfortable?  Suddenly our good friend the Social Worker walked in.  He has been there to see us through it all.  He came and sat with us.  The doctor informed him of what he discussed, and for the first time he didn’t talk much.  He just sat with us.  I was glad he was there.   

The appointment guy came back and confirmed an EEG for the following day and a neurology appointment for the next Tuesday.  Sounded great.  I couldn’t believe we got in so quickly.  I had to get on my phone and confirm the appointments.  They wanted me to do that while I was still there to ensure everything would work out.  The nutritionist came and started punching numbers in her calculator, determining how we can increase Jayson’s calories and feeds.  Meanwhile, Jayson was getting more and more inconsolable.   People slowly started leaving.  The doctor came back to say goodbye and tell us to follow up in 3 months.  He saw Jayson was really upset and we told him the episode was progressing.  He looked concerned, but told us he needed to continue to his next appointment.  He said the EEG was tomorrow and would give us some good information and we could see about getting medication as soon as we had EEG results.  He shook our hands and left.

We were in the now empty doctor’s office with my child throwing his body all around and choking on his own tears drowning his face.  My child doesn’t cry.  There was something really wrong.  I took him from Mike and tried everything to calm him down.  The episodes were out of control.  They had taken over his body and I could tell he was exhausted and possibly in pain.  After five more minutes of screaming and convulsions, I told Mike to go get a nurse.  I didn’t know what to do.  Mike came back, and behind him followed a couple of nurses, the appointment guy and the doctor.  They watched for a moment and I said, “They’re getting really bad, and I just don’t know what to do.”  The doctor told the appointment guy to check the schedule and make room for him to get an EEG today.  Everyone took off running.  The appointment guy came back with a 1:00 appointment right at the Riverton Hospital for an EEG.  Perfect.  That was only two hours away.  The doctor came running back in and said he talked with the neurologist and we were going back right then.  Wow.  Something was being done.  Now.

The neurologist came in and told us to follow her.  We went into a room with a bed and computer and she quickly began putting electrodes on Jayson’s head.  He was uncontrollable.  He didn’t want anyone touching his head.  He didn’t mind it with the sleep study.  It took three of us to hold him down to get all of the sensors on his head.  I cradled him and sat on the bed and the neurologist gave me a button to push when he would have episodes, turned out the lights, said she’d be back in 25 minutes and closed the door.  Jayson had one bad one and I pushed the button.  I wanted him to keep having them so they’d show in the EEG, but at the same time I prayed in the dark, quiet room that they’d stop.  And they did.  Jayson took a deep breath and I could feel his whole body relax.  He went completely limp and into a deep sleep.  I let out a sigh of relief and just cuddled my baby.  I thought about how this was a lose, lose situation.  If the EEG said they were seizures, that was bad.  If the EEG didn’t detect anything, we’d wonder what they were and have to just endure them without treatment or medication.  After about 15 minutes, I realized it would be beneficial if Jayson could have just one or two small episodes we could pick up and see if they are seizures.  I had no idea if I could trigger any, but I repositioned him thinking it might cause him to wake up slightly.  It did, and he began to have three more milder episodes and went back to sleep.  Perfect.  That was good enough.

The neurologist came in and disconnected him from everything and told us to go to the waiting room and the doctor would find us there.  She left and we packed up Jayson’s things.  As we walked down the hall, we saw the neurologist, our ENT and the doctor meeting in a room staring at a computer screen.  We’d soon have answers.  Just a few minutes later, the doctor came out to the waiting room and asked if we’d like to come back to our room.  We walked down the hall wondering what type of news we would hear.  He asked us to take a sit and let out a loud sigh.  Not good.  He said, “The good news is they are NOT seizures.  No seizure activity was detected on the EEG.”  Great news.  But what were they?  The doctor continued, “However, we saw some abnormal things on the EEG.  There was slowing of the brain with possible lateralization.”  What does that mean?  “It means there is some damage to the brain and your son is likely to have some significant physical and mental disabilities.”  My heart stopped.  Right then and there.  It just stopped.  I had to remind my body to breathe.  It would be okay.  I would be okay.  “Okay.”  There was a lot to process.  He continued, “I’m so sorry.  With all of that being said, he is not having seizures.  They are myoclonic jerks, but due to the brain issues, they can develop into seizures.”  I asked, “When I researched myoclonic jerks, it said kids grow out of them; do you expect him to grow out of them?”  He paused and responded, “With typical kids, yes.  But with Jayson and the issues he’s facing, I expect them to get worse.”  Wow.  “Okay.”  That’s all I could say.  “Okay.”  But nothing was okay.  He said, “We discussed this as a team.  I don’t make any decisions or bring news without talking to a team first.  The neurologist, ENT and myself talked about the findings of the EEG and the episodes Jayson is having.  We can’t leave you alone with nothing to help him.  We talked about medications and narrowed it down to three options.  The other medications we would typically use would be scary because of his apnea.  We’re thinking Keppra would be best.”  He explained the medication and the risks and how it may not even help.  We agreed to try it.  As he walked out of the room to write the script, Mike and I looked at each other again.  We had the same looks on our faces.  Suddenly, a silver lining came to mind.  I said, “Mike, in the EEG room I was thinking this was a lose, lose situation.  If they’re seizures, that’s bad.  If they’re not, we don’t know what they are and we can’t get medication or treatments to help him.  Perhaps this is a good thing.  They’re not seizures, but we’re getting medication because of the other findings.  Maybe this is an answer to our prayers.”  Mike nodded and agreed.  We were trying to stay positive.  We couldn’t fall apart now.

We got our prescription and the doctor said we should follow up with him in a month.  We walked out that door in silence.  Jayson was over his episode and was sleepily lying in his stroller.  My head was spinning and my stomach was sick.  On the way home I realized that things would never be the same.  Here I’ve been, wondering how many more weeks or months it would be until my baby was better.  Now I knew he would never be better.  My baby was never getting better.

Graduation

May 4, 2012

Today was a beautiful day; one Mike and I have waited for 5 years to celebrate.  However, it was difficult to enjoy Mike’s Graduation Day when our minds were on our son.  The mood was a sullen one.  Mike quietly got up and got ready for graduation.  I was trying to catch up on sleep, since Jayson had a very rough night with some of his worst episodes to date.  Mike left to go to his commencement and I sadly wished I could go and support my husband on one of the biggest days of his life. 

I moped around the house for a while.  I had a lot to do to get ready for the day’s festivities, but I just couldn’t do it.  Yesterday, I was in shock.  Today, I was in mourning.  Some have questioned why?  It’s not like my child is dead!  No, he’s not dead.  But I’m mourning the child I thought I would have.  I still love my own, and I wouldn’t trade him for anything in the world.  But he was going to be different.  Our lives were going to be different.  And there would be some tears, anger and resentment, I’m sure, before I reach the acceptance phase.  Today I was sad and angry, and I showed it in a lot of ways.  I yelled.  I screamed.  I had a panic attack.  And I cried—all. day. long.  I kissed my sweet baby and thanked my dear NICU nurse friend who came to watch Jayson so I could be with my husband while he walked and accepted his diploma.  I didn’t want to leave.  I hated leaving my baby.  I hated going out in public when I haven’t hardly left the house in months.  I hated putting on a happy face when I was dying inside.  I hated having people tell me I was being dramatic.  Honestly, I could be whatever I wanted to be today.  My baby was not going to be okay.

While at the University of Utah, I tried to escape a little and focus on the joyous occasion.  I whooped.  I hollered.  I took pictures.  I watched my husband.  He was feeling the same way I was inside.  It was written all over his face.  I cried.  I cried for him because I wanted him to enjoy this day.  I cried because everywhere I looked there were babies.  Healthy babies with their proud mommies and daddies all decked out in Ute attire.  That was supposed to be my baby.  He was supposed to be here.  I cried because we were grown up now, Mike and I.  Not just because he was graduated, but because we have had more than our fair share of adult experiences.  I cried because we were different people now.  More serious, more sinacle, and more mature.  We weren’t going to celebrate graduation by going to Disneyland, or going on a Cruise, or even going to dinner.  We just wanted to be back home with our baby.

Not a lot of words were said that day.  Mike and I were in our own world, and I don’t even know that we were in it together because he felt a million miles away.  We kissed at the University and parted ways, to meet again at the house to prepare for our celebration with our families.  After a very frustrating afternoon trying to pick up oxygen tanks for my son so he could GO to the party in the park, I lost it.  I screamed and yelled and cried.  And apparently it wasn’t okay.  Well how could I be expected to be okay or act okay when my world was not okay?  I would be okay one day, but not today.

We set up at the park and started our party late.  I kept Jayson in his stroller hooked up to his oxygen and feeding tube and we tried to stay away from the crowds.  His immune system is still down, and we were told to keep him away from people until mid-summer.  I got some curious and critical looks, as well as comments.  I quickly discovered many members of Mike’s family were not informed about our current situation, or even recent situation.  I felt bad and had to answer many questions I did not want to answer.  Many people were confused as to why I was so protective of Jayson.  Others wondered why my face was stained with tears instead of grinning from ear to ear.  I wanted to be happy.   I really did.  And I was very proud of Mike.  But the timing was bad.  I am not able to shut off such painful emotions to paint on a smile for an occasion.  I wear my heart on my sleeve.  Take it or leave it.  I hope that through this blog all members of our family and our circle of friends can be informed on what's going on with our sweet boy and our family.  Sorry to those who had no idea or who were not more informed.

We surprised Mike with a wonderful gift and he was thrilled.  He had wanted an i-pad for some time, and never saw it coming.  Thanks to everyone who contributed.  I think the gift alone made this a day Mike would never forget.  It gave him something to smile about.

I am proud of Mike.  He has worked so incredibly hard.  I know how difficult college is, but I never had to attend while I was married with a child.  He is brilliant and hard working and he’ll be a wonderful urban planner.  I love that man so much and am so blessed to be called his wife.

The Sleep Study

May 5, 2012

We managed to have some fun today.

Today was the sleep study.  Been there, done that.  This was just more of the same.  Jayson got plastered with little sensors and was incredibly calm this time.  That confirmed that he was so upset during the EEG because of his episode, not because of the sensors on his head.  The respiratory therapist in charge of the sleep study remembered him.  She told us how much she has thought of him and how he stole her heart.  She said she doesn’t feel that way about many patients.  We get that a lot with Jayson.  He is a very special boy.  I geared up for a long, hard night, but was pleasantly surprised.  Jayson had only a couple of mild episodes.  Could the medicine be working???  He slept well.  They started with his oxygen on this time and then weaned it down.  I quickly awoke when his oxygen was turned off.  He was grunting, gasping and fidgeting.  He was uncomfortable.  I watched him and comforted him.  He had to struggle for a straight 5 minutes before they’d bring back the oxygen.  I knew he needed his high flow.  I knew it.  He wasn’t ready to be off of it yet.  I picked him up and attempted to rock him to sleep.  To my dismay, he went right to sleep and began breathing calmly and regularly.  I smiled and I realized that he had grown accustomed to the air and the support it gave him, but it appears he didn’t NEED it.  I laid him down and checked the monitors.  His oxygen levels were at 100%.  Crazy.  This was looking positive!  I woke up periodically to see his oxygen levels were good.  They dipped quite a few times, but always came back up.  I will get the analysis in a week and a half at a doctor’s appointment with a new Pulmonologist.  I was anxious to learn if his apnea has improved.  For now, I’m excited to think that we might begin weaning his oxygen in the near future!

The Neurologist

May 8, 2012

We’ve been waiting for this neurology appointment anxiously.  We haven’t told many people about the latest diagnosis, just family and some close friends.  We wanted to wait to learn of more details from the actual neurologists.  Mike left work early to join me at this critical appointment.

We began with the Physician’s Assistant who mainly asked us a lot of questions and jotted down a bunch of notes.  He had glanced at Jayson’s file and history, but knew very little and got his facts confused.  He asked us if we heard of the EEG findings.  I said, “Yes, no seizures.  But brain slowing and possible lateralization.  That’s what we want to ask the doctor about.”  He said, “Wait, did you have only one EEG?”  “Yes.”  “Hmm… let me pull this one up, because I don’t remember seeing those things.”  He pulled it up.  “Interesting… Well, I’ll go get the doctor.”

The doctor walked in and my sixth sense told me instantly that this was a mistake.  The doctor had one earring his in ear, walked like he was THE man, and sat casually on his chair.  He said, “So, the EEG shows your child is completely normal.  What else do you guys need to know?”  What?!  I mentioned the findings we were told about the Thursday before, and he looked at the EEG again.  He said, “The brain slowing was during an episode and was during normal range.  There’s no evidence of lateralization.  It’s a perfectly normal EEG.  No seizures.”  I asked why we got different information the other day and he said our pediatrician isn’t a neurologist.  I informed him it was HIS senior neurologist that analyzed it with my doctor and told him what to tell us.  He said he didn’t know, but that everything was okay.  I asked if we could get a 24 hour EEG and he told me no.  My child was fine.  I asked him to watch my videos and he brushed it off.  I asked him how myoclonic jerks could last for 45 minutes?  He said, “Babies do some strange things.  My office is full of parents bringing their kids in for doing weird things and thinking it’s seizures.  Parents need to just realize that babies to some weird things we can’t explain.”  Nice.  If only I had a dollar for every time I heard the explanation, “Babies do some strange things.”

I asked, “Well, if his episodes and just myoclonic jerks, do you think they’ll just go away?  That’s what I read, is that they will just go away.”  He said, “Well, with a typical kid, yes.  But looking at your kid, I can tell he’s got some type of syndrome and other things going on, so with him I don’t know.”  Nice again.  If only I had a dollar for every time I heard a doctor callously point out my child looks different.

I persisted.  I said I didn’t think it was common for these episodes to last that long and be that consistent.  It was clear through our conversation that this doctor knew nothing about Jayson, his history, or even the notes I had made on the extensive paperwork I filled out for this appointment.  I begged him to watch a video of a bad episode.  He hesitated, then agreed.  He watched for a few seconds and started to hand my i-pad back.  I turned it towards him again and told him to keep watching.  When Jayson’s head began to bob and his eyes bulged in different directions he said, “Oh, well that’s concerning.”  Thank you.  I’m not an idiot.  He said, “Well if he were doing that all of the time, I might be worried.”  Seriously??? Has he read anything???  I said, “He had been doing that every day at least twice a day for over a week.”  He said, “HAD, he is no longer?”  I explained, “No, we haven’t had any of these bad episodes since late Friday, early Saturday morning.  I think the medicine is helping.”  He told me that the Keppra we were given is at such a low dose that it wouldn’t do anything if they were seizures.  I didn’t care.  It seemed like it was helping.  He mentioned taking it away, but said he doesn’t believe in un-prescribing what another doctor has prescribed.  I asked again about the 24 hour EEG.  He said, “I’ll tell you what.  Give it time.  If the medicine truly is helping, great.  Let’s see if he has more of these BAD ones you call them.  If he has a lot of them, many of them for several days, call me and we’ll order a 24 hour EEG.”  Well, that was something.

I asked what he thinks could be causing these episodes if they’re not seizures or related to brain damage.  He said reflux.  Seriously?  If only I had a dollar for every time a doctor blamed some scary event on reflux.  With as many babies who have reflux, it’s amazing any of them survive.  Apparently reflux kills.  Who knew?

I asked him about long term physical and mental limitations that were described by the other doctor.  He again referred to my son’s “apparent syndrome” and said he expected there would be some.  I inquired about Cerebral Palsy, and he said that an EEG wouldn’t show that, and that wasn’t in his area of specialty.  Really?  Cerebral=brain.  Neurologists study brains.  Awesome.

Well I could tell we were going nowhere with the doctor.  I wanted to believe him that nothing was wrong with Jayson.  I wanted to believe what he said with all of my heart.  But it didn’t feel right.  He knew nothing about Jayson and dismissed everything too quickly.  I asked about a follow up, and he denied.  After discussing it further, he agreed to set a follow up for 3 months down the road with the intent of cancelling it because Jayson was fine.  I got a slip giving me permission to schedule a follow up and we left.  I stopped at the front desk.  Instead of making my appointment I asked, “Hey, is there another neurologist I can make this follow-up appointment with?”  The receptionist said, “Yes.  She’s at Primary Children’s.“  When he said her name, I recognized it.  She was the one who read the EEG to begin with.  Perfect.  She was who I wanted to see.

One step forward, two steps back.  Just when I thought we were getting some answers, I just end up confused.  It’s one thing to have different professional opinions, but how can two doctors be so different in their diagnoses??  I called a friend tonight who has been through similar experiences.  She shared with me how her twins have been diagnosed and undiagnosed many times.  I asked her how she deals with it, and she says she gets numb and calloused.  I’m nearly there.  I’m nearly there.

So what now?  I’m done with doctors.  I may visit them.  I may rely on them for many things, but I’m done believing them.  Do you know what I believe?  I believe I am the expert on my son.  I believe that my son is capable of anything.  I believe that only God knows what is in store for him.  I am not setting any expectations and as far as I’m concerned, my little boy is NOT normal.  He’s spectacular, and he’s going to prove it to me, the doctors and the world.  Just wait.