Christopher Metsker’s Journey

Note:  Christopher is my grandson, and I wanted to share his story.  My daughter Tara has been an awesome advocate/caretaker for Chris and she took the time to write down Chris’ Journey.  The below was written when Chris was 14 yrs old, and today he is 23 yrs old.  It’s important for people to understand that at the time Chris was diagnosed with Bacterial Meningitis, the local high school had a serious outbreak.  I sat in the waiting room with this young man’s parents.  I forget his name as it was so many years ago but the young man died from the same thing our Christopher had.    

My grandson is 23 today, in diapers and needs to be carried or lifted with (Hoyer lift).  My daughter has a form of Muscular Dystrophy (Charcot Marie Tooth) , and she works so hard. Never complains!   As Tara’s mother, it hurts to watch her deal with all of this 24/7 but this is her son, and she is devoted completely.  I admire Tara for that, and would NEVER tell her to do something that is NOT in her heart.  This is her journey – not mine.  I have prayed every day for my grandson and for Tara.  I spoke to my Internist whose a Pulmonary Specialist as I needed a little reassurance.  My doctor reminded me that Christopher Reeves was also on a Ventilator until his death.  He did ok!  I ask God to watch over my daughter and family –  I love my daughter and that will never change – she will always be in my heart.  

Christopher was born on November 10, 1994…My little guy was giving me a run for my money before he ever made his grand entrance…I was back and forth to the hospital for a few days because I was sure he was ready to come out and say hello…

When Christopher was born they immediately took him away to another hospital because he was having difficulty breathing…After many tests my little man was diagnosed with an ASD & VeloCardioFacial Syndrome..He also had pneumonia during his 16 day stay in the hospital…Despite the heart & lung defect he was born with he was expected to live a normal life…Again, after 16 days in the hospital we brought our precious baby boy home and started what we hoped to be a fun & exciting life filled with football, skateboarding, surfing and of course GIRLS!!!

On January 6, 1995 my husband left to go on a 6 month tour of duty aboard the submarine he was stationed on at the time…Christopher was just shy of 2 months and our daughter was going on 2…On February 14,1995 Christopher & I both became very ill…In the middle of the night I packed both of my kids up and set out for the Air Force hospital because it was the closest..I explained to the man working the desk that my son has a hole in heart and his pulmonary artery is wrapped around his trachea and it is very important that he get immediate attention…The man looked at me like I was crazy and made us sit in the waiting room for hours..I was diagnosed with a bacterial infection & Christopher was diagnosed yet again with pneumonia…We both were sent home together with fevers and antibiotics…Mind you this baby was only 3 months old at the time…He should have NEVER been sent home.

Over the course of the next 2 weeks Christopher showed no signs of improvement…In fact he was getting worse…At 3 1/2 months he still only weighed 10 pounds…I took him back the ER multiple times only to be sent home because *he was having left over symptoms from the earlier pneumonia*…During this time I made several calls to the CO’s wife to try and get my husband home because as the wife I was getting nowhere and I knew something was wrong…Unfortunately, they hear every whine, moan & groan from ladies that can’t handle having thier spouses deployed so my crying about my baby wasn’t taken seriously.. I recall saying to this lady “does my baby have to die in order to get my husband home”…She replied back to me “I would hope you wouldn’t want your baby to die just so you can have your husband home”…Not a good thing to say as she would soon find out…

On February 28,1995 I dropped my daughter off at the neighbors and set out for yet another trip to the ER..Christopher’s temp did not want to come down below 103.5…On the way to the hospital my car broke down on the freeway…In Virginia there are tunnels everywhere so I was able to walk to the booth and have the worker call an ambulance…When the paramedics arrived they stripped my baby and started giving him oxygen…When we got to the hospital I was told that my baby had a minor infection but was going to be ok…I still had a fever, hadn’t slept in weeks and still had a toddler at home…The doctors told me to go home and get a few hours of sleep while they took care of my baby…I was young, tired and naive…If I knew back then what I do today I would have never followed this advice…At midnight my neighbor picked me up since my car was towed…I would later find out that the Doctor’s knew before I ever left that hospital that Christopher didn’t just have a minor infection…My baby was very sick and they failed to tell me…

At 6am the following morning a military police officer showed up at my doorstep and my phone began ringing off the hook…The hospital was ordering me back like NOW and of course they wouldn’t tell me over the phone what was happening…I was stranded without a car and our local police would not take me because it would have taken them out of their jurisdiction..Finally the MP station sent one of their officers to take me…By the time I got to the hospital someone had called my mother here in California and requested that she fly out immediately to be with me…My husband’s ship was notified and plans were being made to get him to shore so he could fly home..It would take him 3 days to get to us…In fact he was due to have an overnight layover in New York so 3 guys that had stayed back for schooling drove from Virginia to New York to pick him up so he could get home to us quicker…He still did not know the severity of things (the Navy could not tell him aboard the ship for obvious reasons) until he saw those guys and called home to find out his mother , sister & father were all there…These are 3 people that cannot be in a room together so he knew something bad was happening…

My husband was a radioman and was the one to receive the American Red Cross messages that were coming through…Because they were encrypted he couldn’t read them…Imagine how he felt when he learned later what those messages were saying…14 years later I do still have those messages saying that our infant was in *Grave Condition*

When I arrived I walked through the double doors to see several people in uniforms standing outside of a room crying…There was a transport team waiting as well with an incubator…I remember wondering to myself *why are all of these people so upset*…Turns out it was my son that had them so torn up…At 5am my guy was found in his crib in full cardiac arrest…Christopher had Bacterial Meningitis and because it went untreated he had gone into septic shock..

Chris was in cardiac arrest for 2 hours…He was without oxygen for 1 hour…During the code there was mass chaos…30 mintues into the code a kink was found in the line that was suppose to be pushing heavy doses of medications into him…His veins had collapsed so they couldn’t get lines into him…In one report I read the transport team expressed frustration to their boss because they counted in excess of 30 people at my son’s bedside and they couldn’t get in to do an accurate assessment of him…When my baby was brought out he had needles from head to toe…He was very swollen and bluish/purple in color…I will never forget that moment!

Christopher was in a coma for 7 days…He was not expected to survive the first 24 hours…He had suffered extensive brain damage from being without oxygen for so long…The prognosis was not good…I remember sitting at his bedside while he shook & shook and asking the nurse why my baby wouldn’t wake up and why he was shaking…He was having seizures every few minutes…It still wasn’t registering in my mind what was happening…At one point the doctors suggested giving Chris a drug to make him comfortable but would eventually stop his heart so he could pass on because all tests showed he would be what the Dr’s called a *Vegetable* for the rest of his life…We declined and I thank my stars everyday that we made the right choice..We were told Christopher would never live past age 5 because his body would eventually give out from the infections…His spleen was damaged during the code and does not function so he is on antibiotics for his entire life..

At one point he began to take a turn for the worse and they expected him to pass on so the PICU allowed us to have 9 family members at his bedside to have him baptized…A few days later we decided that it would be best to take Chris off the machines…It was the hardest decision Justin & I had to ever make…Imagine our shock and disbelief but mostly joy when our beautiful baby started breathing on his own…Chris was going to beat the odds! He had unfinished work to do and wasn’t ready to leave…

We were not allowed to bring Chris home after the 35 days he spent in the hospital..From there he was placed in a pediatric nursing home so he could stabilize and we could learn how to operate all of the equiptment he would now rely on…Those were 22 very painful months..In the beginning I went to visit him everyday but as time wore on it became harder to make the 45 min drive to & from especially with a toddler at home and nor and no family around. I couldn’t have asked for a better place to care for my baby. They showed not only Christopher but the rest of us SO much love & compassion…

It has been 14 years since my baby’s life was forever changed…I am proud to say he is still here with us and thriving…Christopher lost the ability to walk…He will never be able to call me mommy…He is fed thru a feeding tube that is inserted into his belly not far from his belly button…He is dependant on us for his every need…Christopher will always have the mind of a 5 month old baby! One of the most difficult things I have found about having a child with special needs is NOT being able to help him when he is sick..I am his voice. It is up to me to know the signs and convince his Dr’s that something isn’t right..It hasn’t been easy and I am still fighting today to get certain things addressed… I knew 14 years ago that something was wrong and look where it got us. I will NEVER let that happen again.

Despite his limitations he is the most courageous & determined person I have ever had the pleasure to come in contact with…He claps his hands when he is happy or when we have figured out what he wants…He rolls around on the floor and pushes all of his toys till they are all lined up…He is so methodical about it…Even though he is flat on his back we still have to Christopher proof everything because if his little hands can reach it he is into it…He is truly an angel…I honestly would not know what to do if I ever lost him…

Christopher has taught me to appreciate the little things in life…I get tickled when I see him transfer a toy from one hand to the other because for him it is a big thing…He hates cable news but will allow me to watch local news…These are things that wouldn’t matter to anyone else but for us it means our little boy is aware of his surroundings and showing us that he knows what is going on…

We had a scare with bone cancer almost 2 years ago but that was a negative…He suffered a hip fracture during a routine PT evaluation back in September ’96 in which the hardware that is holding his hip together ripped right through his muscle..Since that day he has not been the same…He has lost most of his strength in his left side..The Dr felt it had to be something to do with his brain and not the fracture so they did an MRI on his brain..It showed no new damage but the Dr feels he had a stroke sometime after the intial trauma to his brain so that has me wondering how in the world did we miss that..

The last 14 years have been really hard on me…To this day I still struggle with guilt over going home that night…When he is sick and can’t tell me what is wrong or what he needs it kills me…A sore throat? He is SOL because I can’t put anything down his throat to ease that swallowing glass feeling…When we eat he looks at us like *that looks yummy why can’t I have any*…It hurts…I take comfort in knowing what a happy child he is…His smile every morning, noon and night gives me the strength I need to keep doing what I have to do to ensure he lives the best possible life while we have him…

(I have been trying to take from Tara’s Facebook pages events/comments where Chris is concerned so bear with me as I do this to update Chris’ Journey.)

April 2015 – Chris is admitted to Children’s Hospital – Los Angeles.  He had gotten to the point where he could not urinate and he was running a temp.  It turns out Christopher has ILEUS which is a type of obstruction in which the small intestines do not work as normally as they should.  Normally, the small intestine’s muscles squeeze to move air, fluid and food through it.  But in an ileus, the small intestine has trouble moving the air, fluid and food along.  These things then get stuck in the small intestines and cause symptoms.  What causes ILEUS…

  • A collection of blood in the belly or tissue in the region behind the intestines called the “retroperitoneum”
  • Certain medicines, especially strong pain medicines
  • Infection, such as infections of the intestines or inside of the belly
  • not enough blood flow to the intestines.

What are the symptoms:

  • Belly pain
  • Belly swelling and bloating
  • Nausea and vomiting
  • Not being able to have a bowel movement or pass gas.

The doctor seems to think Chris will get through this fine.  He is definitely in the right place.

2014 – Christopher is out of surgery..We have the most amazing Orthopedic surgeon ( Dr David Skaggs at CHLA if your child ever needs one )..He didn’t have to open his entire back like we thought and they didn’t need to take bone from his hip..He does have 3 rods now and some extra screws..If all goes well respiratory wise we should go home in maybe 3 days..Thank you for all of your prayers and support..I have been horrible with replying..Please understand my stress level is through the roof right now..I can’t leave him, haven’t slept much in a week and I’m so busy up here helping to care for him..

9-17-14  Christopher needs ALL the prayers he can get PLEASE…One of the metal rods in his back has snapped so we are waiting to go into the OR..

This child has had 4 strokes..More than half of his brain is damaged..He is my miracle..Every day he does something to amaze me…I’m so blessed to be apart of his amazing world…

UPDATE March 24, 2018 :  Since 2014, Chris was admitted to the hospital several times.  He always came through no matter what.  Tara has been his caregiver and of course Justin helps when he gets off work.  These two have been the best caregivers.  Tara has bonded with Chris as you can imagine.  She could be a nurse today – that’s how good she is.   I am proud of both of them – always have been.   It has been a rough 23 yrs for Tara, Justin and Brandi.    Christopher is not doing well and has declined.  My heart is heavy  for my daughter.  They knew this day would come but are you ever prepared?  No.    My love to all…I love you all so much.

Update March 28, 2018:  Sadly our grandson passed away tonight at 10:30pm.   He died peacefully and is with the Angels.  Our hearts are broken.