THE JOURNEY

THE JOURNEY: Finally!


I watched the world around me grow.  I looked on as I saw those in my presence begin to build their families.  I became an aunt and then an aunt three more times after that.  I felt as though I would never be one of the "lucky ones".  Doctor after doctor, procedure after procedure and nothing.  Even my friends who struggled with infertility themselves, one by one became blessed with their one little miracles.  I truly believed my time would never come.


Ten years later and with one last breath of hope it worked.  It was literally my last attempt at IVF.  If this wasn't going to work we would be one of those couples who would travel around the world.  But it worked; oh, did it ever work.

I remember the day the doctor called to tell me I was pregnant.  I danced around my room like a ten year old, laughing and all giddy.  At my six week check up, Matt and I were told we were having twins.  It was all so surreal.  Twins were perfect.  I would never have to go through fertility treatments again.  Our family would be complete.

At my eight week check up I remember looking at my doctors face become ever so pale.  Matt and I looked at the monitor and suddenly realized why.  Instead of just two heartbeats, there were three.  How was this possible?  The doctor only put two fertilized eggs in.  I remember in the car ride home, Matt being over joyed an I being scared to death.

You see, Matt and I are both public school teachers.  At the time I was 36 and he was 38.  We lived in a modest house with our two dogs and our cat.  We weren't wealthy.  We weren't young.  I would have been more than happy to have just been blessed with one baby and now we were having three.  Definitely not part of the plan but we slowly became ready for the adventure ahead.

My pregnancy was far from typical.  I had every possible pregnancy complication possible.  I went into pre-term labor at 26 weeks and was put on hospital bed rest for the remainder of my pregnancy.  I'm not going to lie, I was miserable and although I knew the babies weren't ready, I could not wait to deliver.  I remember I made a sign which I put directly across from my bed to remind myself the importance of keeping the three little ones inside of me so they could grow.  The sign simply read "It's better I suffer now so that they don't suffer later".  I read this sign over and over again.  It is what got me through the next five weeks on bed rest.


THE JOURNEY: August 29, 2010 

After 14 hours of labor, my doctor decided he needed to deliver the babies.  If we had known then what we know now, we would have done anything to try to stop the labor to get the babies to 32 weeks.  On August 29, 2010 our little ones came into the world.  They were nine weeks early and combined weighed less than eight pounds.

Caden was baby "C" and had a little trouble during my c-section.  He was delivered two minutes after his identical twin, Ethan, which meant he went about two minutes without oxygen.  Despite this, the doctors did not seem that concerned and his Apgar scores were excellent.  Caden was the biggest at 3 pounds, 4 ounces and was by far the healthiest in utero.  We were confident everything would be alright.


THE JOURNEY: The NICU

Caden was doing well.  Far better than his brother and sister who were struggling.  Caden seemed the most alert and at one week old was taken off C-Pap and put on a nasal canula.  He was growing and developing well.  It is routine for any preemie born before 32 weeks gestation to have a head ultrasound at one week old so when we came in to see the babies the day after the ultrasound we weren't expecting any big news. We were wrong.

The doctor told us that Caden had a grade 1 Intraventricular Hemmorrhage (IVH) which meant he had a small bleed in his brain.  We were told he was at risk for having a mild learning disability but that these bleeds don't get worse and will absorb into his blood stream.  We were devastated by this news.  At one week old we already knew that something could be wrong with our perfect little baby boy.  This was only the beginning of a journey we never imagined we would be traveling.

By the time Caden was discharged from the NICU on October 16th, his grade 1 IVH had somehow progressed to a grade 3 which is considered severe.  An MRI prior to discharge showed significant Periventricular Leukomalacia (white brain matter loss).  Our son was significantly brain damaged and he was only seven weeks old.  The doctors seemed very nonchalant about everything and we were shocked that Caden was the first one home of the three.  But having him home first meant we could process what we were told and begin to get to know our little boy.


THE JOURNEY: Year One


All three babies were home by Thanksgiving and we celebrated finally being together as a family.  Both Caden and Ethan were on oxygen and apnea monitors so we lugged around various tanks and got ourselves caught up in wires.  The beeps from the NICU continued to sound at all hours of the night, but we were overjoyed that we would no longer spend just an hour a day with our children,  They were ours now.  I don't remember the exact day we stopped sleeping but it was sometime in the fall of 2010.  We have not slept since.


Caden was doing well.  He even began to do things his brother and sister couldn't.  He was the first to roll over and push himself up on his arms when lying on his stomach.  For a brief moment, we actually thought everything would be alright.  We had hope.

Around December of 2010, I started to notice something wasn't right.  We would go to visit people and they would watch Caden push himself up into a standing position.  They were amazed at how strong he was.  This was when I began to realize that he was developing Cerebral Palsy.  He wasn't strong, he was spastic.  I didn't say anything to  anyone but began doing research.  As much as I didn't want to believe it, I knew I was right.

In January, when Caden was less than 5 months old (3 corrected) I had his neurologist diagnose him with Spastic Quadriplegic Cerebral Palsy.  This was a very young age to diagnose c.p. but I wanted to begin to get him the services he needed so that we could help him develop as best as possible.

Despite this diagnosis, his doctors said he was developing fine and that he was meeting some milestones.  He was only slightly behind his sister, Emily and was doing better that Ethan.  We felt they were in denial.  They did not see what we were seeing.

At around 6 months old, Caden began to vomit regularly.  He always struggled with reflux but so did his brother and it was very typical for preemies to have reflux so we didn't think much of it.  However, where Ethan's reflux was getting better, Caden's was getting significantly worse.  He would vomit after every bottle and it became harder and harder to feed him.  His G.I. doctor said it was just reflux and he would outgrow it but we were not convinced.

We tried various formulas and his doctor prescribed different medications but none of them worked,  He continued to get worse and by the summer it would take me two hours to feed him three ounces and then he would throw it all up.  Still, his G.I. believed he would be fine and that we should just keep trying to feed him.

At this point, I was livid.  We were watching this little boy waste away and suffer.  In July 2011, I took him to his neurologist because on top of his G.I. issues he was screaming in pain, pulling away from me and nothing could comfort him.  She examined him and said that his issues were G.I. related and that he was fine neurologically.  She said she would see Caden again in four months.

Four months?  Was she kidding me.  There was something very wrong with our son and none of his doctors were listening.  Two days after his neurology appointment, we decided to take Caden to an E.R. at a different hospital to see what they had to say.

Two days after Caden's neurologist said he was okay, the neurologist at this other hospital discovered he had hydrocephalus (fluid on the brain).  At no time had his other neurologist ever consider doing a CT Scan despite the fact that she originally diagnosed him with the brain bleed.

Caden was transferred to the Children's Hospital of Philadelphia (CHOP) one week later so his significant health issues could be addressed.  While there, he had an endoscopic third ventriculostomy which was a surgery to open up the space between his third and fourth ventricles of his brain to allow the CSF fluid to drain.

Prior to his discharge, doctors placed him with a a feeding tube (g-tube) so that he could be given food directly into his stomach via pump.  He was in the hospital just under a month and made it home for his first birthday.


THE JOURNEY: Year Two


We were home for less than a week when Caden began to vomit repeatedly so off we went back to the Children's Hospital of Philadelphia.  The doctors felt Caden needed a GJ-tube over just a G-tube.  A GJ-tube goes directly into the intestines so all nutrition would bypass his stomach.  This is devastating as a parent because our little boy would no longer feel what it was like to be full.  He came home a week later.


Because of Caden's medical issues, we were able to get him private duty nursing.  I worked full time and Matt and I had Emily and Ethan to take care of as well.  As much as we knew a nurse was necessary, we hated it and to this day still do.  We are very rarely alone as a family.  I am NEVER alone with Caden. It breaks my heart.

Caden returned to the hospital one more time in the fall of 2011 because he feeding tube came out.  But after that, things seemed to slow down a bit.  He still threw up daily but because his food was bypassing his stomach, he never threw up food.  He was gaining weight and was very slowly beginning to make some progress in his various therapies.  Caden was receiving physical therapy, occupational therapy, feeding therapy and hydrotherapy.  I would come home from work and drag him, along with his brother and sister to therapy every day of the week.  Another necessary evil.

Spring came and went and Caden was able to keep himself out of the hospital.  He did have eye muscle surgery to correct his strabismus (eyes crossing) but that was just an overnight stay.  Things seemed to be progressing, although slow, but we were confident things were heading in the right direction.  This was until August, when Caden took a turn for the worse.  He began to vomit excessively again and seemed very lethargic.  On September 12, 2012 Caden had his first seizure.  It was a tonic-clonic seizure that could only be stopped with rectal valium.  He was rushed to our local hospital where his neurologist discovered his hydrocephalus had returned.  He was transferred to CHOP where his neurosurgeon surgically placed him with a VP shunt.

One day after surgery, Caden began vomiting violently; more than he ever had before.  The doctors said it was from the anesthesia but we knew something was wrong.  Three days later they discovered that part of his bowel had herniated where the shunt drain was placed and he was rushed in for emergency surgery.  His neurosurgeon said it was only the second time that has happened in his 20 year career.  We were very lucky Caden did not lose part of his already dysfunctional bowel.

A few weeks later, Caden came home but went right back in because the vomiting continued.  At this point, his G.I. doctors did not know what to do so they did a Nissen Fundoplication which is where they wrap the stomach around the esophagus to prevent vomiting.  With the Nissen, they were able to convert his GJ-tube back to a G-tube which made me ecstatic.  Once a Nissen is in place, it should almost be impossible to vomit so Caden would be able to get his feeds into his stomach again.

This is for everyone but Caden.  Caden went vomit free for about one month (he's never made it vomit free for more than a day prior to this) so we believed that we were finally heading in the right direction.  Two days before Christmas, he vomited but when I called the doctor he said it is possible for him to vomit if he has a stomach bug so we chalked it up to that.  However, every day the vomiting increased and we knew, once again, that something was wrong.

Caden was admitted to CHOP in February 2013 for excessive vomiting a now some new symptoms; extreme episodes of pain and myoclonic jerking of the upper body.  Doctors tried every formula with no luck, did every test, which all came back "normal" and had no idea where the pain was coming from.  His G.I. doctors said it was neurological and his neurologist and neurosurgeon said it was his G.I. system.  No one had a clue.  They put him back on a GJ-tube, much to my disliking, and basically told us that we need to think about his quality of life over quantity of life.  We were basically told that he was not going to live very long.  It was the most painful, heartbreaking week of our lives.

I remember Matt and I sitting in the dark in Caden's hospital room crying, feeling helpless, feeling hopeless. We fought to bring our little boy home because all we wanted to do was give him the best life possible with what time he had left.  It was terrifying to think the best children's hospital in the country was giving up on our son.

We came home at the end of February with heavy hearts.  I decided to take some more time off from work to be with my children.  Less than a week after Caden was discharged we were right back in the hospital. This time with all three kids.  All three had RSV (a respiratory infection) and were admitted, however, because Caden is so medically complex, his local hospital immediately transferred him to CHOP.  Back again to a place that had all but lost hope.

They placed Caden on a different service during this stay.  Usually he is in the PICU or on the G.I. floor but this time he was put under the service of Integrated Care.  These are doctors who specialize in medically complex children and work towards getting all the child's specialists together to help diagnose and treat.  We felt a new breath of hope.  Maybe these doctors would have some answers.

The ICS doctors decided it was time to put Caden on TPN (total parenteral nutrition) which meant his nutrients would be delivered right into his blood stream through an I.V.line (PICC).  This is a last resort measure for providing nutrition and should only be done when all else fails.  It was the last thing we wanted to do but we had no choice.

While receiving TPN, Caden had a clot, several infilltrations and various other infections.  Nothing is ever simple when it comes to Caden's medical journey.  Doctors searched high and low, running the gamut of tests to try to figure out what was going on with Caden.  Every test came back "normal" despite the fact that his health was deteriorating.

Where Caden only dealt with chronic vomiting for most of his life, he now had a slew of new symptoms.  For some reason, my son with severe reflux only wanted to lay flat.  He actually preferred to hang upside down. When upright he would not move his legs and could barely move his arms. He seemed to be in an almost comatose type state and very confused.  He would only retch and vomit when upright.  None of it made sense.  Doctors said they had never seen anything like it before.  We would sit him up and all he would do is push himself down.  When flat he would kick and "talk", smile and laugh.  Upright, he would do nothing.

After, three months with no answers, the number one children's hospital in the country transferred him to Cincinnati Children's hospital with the hope that someone there could help our son.  We saw one of the best pediatric diagnosticians in the country who was also stumped.  Test after test came back "normal" but clearly Caden was regressing and his health was declining.  One month later, his doctor fought neurosurgery to turn his shunt down suggesting the possibility his shunt was over draining. It was also in Cincinnati that Caden was diagnosed with a connective tissue disorder called Ehlers-Danlos hypermobilty.  This diagnosis seemed to help put the pieces of the puzzle together a bit and although their is no cure for EDS it was a relief to have something make sense.

We saw some gradual changes within a few days of the shunt revision.  Caden was more alert and was able to keep food down better.  His gastroenterologist put him on a pureed by g-tube diet in hopes that bolusing real food into his stomach would decrease the amount of vomiting.  He went three weeks without throwing up. This was the longest he had gone since he initially received the Nissen. We had hope; for the first time in months, we had hope.

After spending four months in the hospital Caden came home.  Things were good for about a month and then his health started declining again.  He developed a high fever and became very lethargic.  He was hospitalized at CHOP again for a week in July.  The doctor he saw during this stay was the most compassionate, brilliant man that has ever tried to help our son.  He convinced Caden's neurosurgeon to turn the shunt off to see if that would help and again, Caden began to show signs of improvement.

Again, we came home with hope.  Caden was what we call "Caden stable" for a while.  He continued to throw up but usually only once or twice a day.  He still preferred laying flat but was more alert when upright. Although he appeared healthier, something was very different.  One year prior, Caden was taking some steps in his gait trainer and had an eight word vocabulary.  Now, he barely moved, he was much more floppy, had little head control and said no words.  He also had severe fluctuations in his blood pressure and heart rate.  Something was definitely wrong.

Cerebral Palsy does not get worse, yet Caden was regressing.  We questioned whether the shunt over draining had caused some type of compression on his brain stem or if he had some type of Chiari malformation, but his doctors insisted he was "fine".  He was not fine!


THE JOURNEY: Year Three


Caden remained "stable" throughout the fall but as Christmas 2013 came and went, we began to see a slow decline in his health again.  He now prefers laying flat again and hanging upside down and his vomiting has significantly increased.  He is having extreme pain episodes, especially at night and is requiring more medications to assist with his G.I. functioning.


He was hospitalized for four days in January with RSV and was very close to being admitted this month because his weight has decreased and he has not grown. In the past year, Caden has grown less than a half an inch and has lost weight.  He is missing feeds often because of pain and is most likely not getting the appropriate amount of nutrition.  At his appointment yesterday, doctors considered putting him back in the hospital on TPN to help him gain weight.

We are also now considering other possibilities for his complex medical issues.  For so long, doctors chalked it up to his brain bleed and cerebral palsy but now many doctors are suggesting there is more.  His neurosurgeon even feels he does not have cerebral palsy but possibly some type of neuromuscular disorder. He has had a genome study that has come up negative but this study only shows some of the thousands of possible genetic disorders.  He has been referred to a POTS (postural orthostatic tachycardia syndrome) cardiologist and a neuromuscular neurologist.  He is scheduled for anonother CT-Scan and will have an endoscopy and shunt revision next week.  His doctors have added four new medications, one of which has some very dangerous side effects and we are contemplating whether or not to even give it to Caden.

If he does not show improvement in the next few weeks, he will need to be re-admitted and placed back on TPN.  The never ending journey continues.  We will seek other doctors from wherever they are to help find answers.  We will continue to research ourselves for possible answers.  Somewhere, somehow, there must be answers.


11 comments:

  1. Hoping someone reads this that can help with a miracle.

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  2. Caden is a fighter!!!!! What a brave young man!!!

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  3. Reading Caden's story was very much like looking at my own. I am also an identical twin, born at 31weeks (in the 80's) It took 12 years of doctor fighting before I was finally diagnosed with Ehlers Danlos Syndrome (Hypermobility type). I also have had gj-tubes, Nissen Fundoplication and still managed to be what I call a "barfatron". I still end up in the hospital about 2-3 times/year because of Dysautonomia and out of control vomiting. After years of educating doctors and more fighting, they're finally starting to look at the neurological effects (I have lots similar to Caden).

    I want you to know that you're most definitely NOT alone, and there are many other families in similar shoes as you. If you're looking for resources and contacts I'd be more than happy to pass them along.

    Whatever life throws your way, "just keep swimming, swimming, swimming"
    Sending lots of love and positive thoughts your way.

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  4. I pray you and your family get the answers on Caden's health issues. He will be in my prayers.

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  5. Praying for Caden and yout entire family. Keep being an advocate for your child (children)

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  6. Very touched by this. Sending love and understanding your way.

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  7. You are clearly an incredible mom. Thinking about you and Caden and the rest of your family. I hope so much you find some answers and some relief.

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  8. What a lucky boy Caden is to have such determined parents! Keep fighting and he will thank you for it when you figure this out!!

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  9. As an SLP specializing in AAC, I am wondering if Caden ever had an AAC evaluation? If he could at one time say 8 words and if he understands you, imagine what he is capable of communicating? You've probably explored this but if not Richard Lytton of DuPont hospital for children in Delaware does this type of evaluation. I could also give you tips if you are interested.

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  10. Caden is a miracle, he is teaching you guys things you never knew you would learn and making you and your family stronger than ever. His smile is a blessing you get to see everyday. You guys have my love and support. Keep up the good work. :)

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  11. May God continue blessing Caden and your family. He is truly a remarkable young boy with a one of a kind family.

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