Toby's Story

This page is to give updates on our sweet Jacob Tobin Holt and the amazing blessing he is in our lives. Toby was born on Dec. 28th, 2006 with a birth defect called Spina Bifida. Spina Bifida literally means "open spine" It causes paralysis from the point of defect on down, but may affect certain muscles and not others.  It is also usually associated with hydrocephalus, Arnold Chiari Malformation, neurogenic bowel, and a neurogenic bladder. The hydrocephalus is treated with a shunt that continually drains fluid from the brain into the abdomen. The shunt can stop working, get infected, get clogged, and so we watch for signs of shunt failure. The Arnold Chiari Malformation is the descent of the cerebular tonsils into the brain stem, which can cause swallowing, breathing issues, and many other complications. The neurogenic bowel and bladder mean that the nerves that send signals to the brain that the bladder or colon are full and therefore need to be emptied have been damaged. So, cathing is usually required as well as a diet and bowel program to keep the colon empty.

Toby had surgery the day he was born to close the opening in his back, and again 4 days later to place his VP shunt. He went home on January 4th. On January 15th, Toby went back to our local Children's hospital, and this time stayed for 64 days because of breathing and eating issues. He spent half those days in the PICU barely hanging on to his life. His sodium levels dropped to dangerous levels, and he also stopped breathing several times. He acquired some new diagnosis this time: vocal cord paralysis, aspiration, severe reflux, and Central Sleep Apnea. When he came home on March 19, 2007, things were very different.  Now he had a tracheostomy, was on a ventilator, and had a feeding tube that was placed in his stomach with a smaller tube going into his jejunum (small intestine). Nursing care began in our home, 16 hours a day, 7 days a week. 

In March of 2008, we took Toby to Cincinnati Children's Hospital to see a specialized team called the Aerodigestive Team. They added more diagnosis - trachealmalacia, laryngomalacia, one-sided bronchialmalacia, as well as a shortened trachea, and scar tissue in the trachea. However, we left that hospital with some good news - Toby was able to start "tasting" food - he was swallowing and did not appear to be aspirating his food into his lungs. His tasting grew into feeding, and after a nissin surgery in August of 2008 and lots of work, Toby eats pureed food.  Now we are working on eating solid foods.  He can bite and chew solids that dissolve quickly like pretzels, veggie sticks, chips - the eating thing continues to be a struggle, but he now supports his full caloric intake by eating his pureed diet.  We only his g-tube for water and medications.

In November of 2010 - Toby had back to back shunt revisions.  He was admitted again in March of 2011, May of 2011 and then the big whopper in November of 2011.  One evening Toby was complaining of belly pain and didn't seem quite right.  I thought he was coming down with some type of stomach virus (one had landed him in the hospital that March), by the next morning - his belly was HUGE - he was in tachycardia and he had no bowel sounds.  He also had a capillary refill of 6 seconds, so his autonomic system was completely shutting down.  We called 911 and that evening he had emergency surgery to fix a bowel obstruction caused from scar tissue from his 3 previous abdominal surgeries.  We spent a few days in PICU then then we went home.

In March of 2012, we faced another obstacle.  Toby wasn't acting right for a few weeks, and so I had told our nurse in the Myelo clinic and she scheduled a Limited MRI to check his shunt since we already had a clinic visit scheduled.  A few short hours later we learned Toby's shunt wasn't working and were faced with the decision to try a newer procedure called an ETV or Endoscopic Third Ventriculostomy.  This surgery would replace the need for his brain to depend on a shunt by creating a different hole for his csf fluid to flow through.  After three days in-patient Toby went home, and one week later we woke up to our night nurse yelling - Toby was having a seizure.  We immediately called the squad, and the seizure stopped.  After arriving at the hospital and hanging out in critical care for an hour, we learned his sodium had dropped again (no obvious reason besides brain surgery)..and then Toby began seizing again.  This time he convulsively seized for over 4 hours - this landed him into the PICU immediately with an external CSF drain.  The doctors/nurses gave him every seizure drug you can imagine and finally with the help of versed (sedation) he stopped seizing.  About 1 1/2 days later when he began to wake up he couldn't even hold his head up - and so we went to rehab for 5 days.  He came home on Good Friday - and oh what a good Friday it was!

Toby also struggles with autonomic issues like the Harlequinn sign (turning red on half his body), nystagmus, slow motility, severe belly distension, scoliosis (41 degrees lying down and 70 degrees sitting up).  He wears a night-time back bending brace at night to help correct the scoliosis.  It's helping, but we now VEPTER rod surgery and the MACE/Mitrofanoff are in his future - his surgery list is currently at 13.  

Besides all this, Toby has overcome many things.  He is using his HKAFO's and walker to walk (with just a little bit of help at therapy).  He has now weaned from his ventilator and only needs it while sleeping and when sick.  

We have walked through valleys and mountaintops with Toby and have learned to appreciate the simple things such as hearing Toby cry, laugh, and speak, standing, eating food, and getting around the house.  Daily, God gives us mercy and grace to not just "get through" life, but to have true joy and thrive. We long for heaven and the day that Toby will be able to walk, talk, and breathe without medical equipment. God has blessed us in amazing ways with such "sunshine" in our lives - our Toby. 

If you want to read more about Toby's past medical history - you can view it at his caringbridge site:

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