Caleb's CDH Story
  • Home
  • About Caleb
  • About Us
  • What is CDH?
  • Our Blog
  • Years
    • 1st Year
    • 2nd Year
    • 3rd Year
    • 4th Year
  • Photo Album
    • Aug. 12 - June 7, 2019
    • Nov 20 - August 11, 2018
    • May 5 - Nov. 19, 2017
    • Sep. 29 - May 4, 2017
    • Feb. 12 - Sep. 29, 2016
    • Oct. 20 - Feb. 11, 2016
    • Jul. 18 - Oct. 19, 2015
    • First Year by Month
    • May 20 - Jul. 17, 2015
    • Mar. 24 - May 19, 2015
    • Feb. 11 - Mar. 23, 2015
    • Jan. 7 - Feb. 10, 2015
    • Dec. 20 - Jan. 6, 2015
    • Nov. 28 - Dec. 19, 2014
    • Nov. 1 - Nov. 27, 2014
    • Oct. 20 - Oct. 31, 2014
    • Sep. 27 - Oct. 19, 2014
    • Sep. 1 - Sep. 26, 2014
    • Aug. 13 - Aug. 31, 2014
    • Caleb's CDH Surgery Day
    • Aug. 1 - Aug. 11, 2014
    • Jul. 19 - Jul. 31, 2014
    • Caleb's Nursery

One step forward – two steps back…

9/14/2014

2 Comments

 
Picture
Once again, I am sorry for my delay in updating the blog.  I am still trying to process everything that has happened over the last week...

Last Friday, September 5th, Caleb was extubated and his endotracheal tube (ETT) was removed at forty-eight days old. When hearing the news that morning of the doctor’s plan to extubate, I was beyond excited since this would be the first time since birth that Caleb would no longer require mechanical ventilation to maintain sufficient ventilation and oxygenation.  I arrived at the hospital that afternoon and Caleb was breathing with the help of a CPAP, or continuous positive airway pressure.  This type of respiratory support was delivering constant air pressure into Caleb’s nose, which was helping to keep the air sacs in his lungs open.  In the days following Caleb's extubation, he was switched between a CPAP and nasal cannula, which is one of the least invasive forms of respiratory support.

The transition off the conventional ventilator was proving to be successful as frequent blood gases, which were used to help determine Caleb's adequacy of respiratory function (oxygenation and ventilation) as well as his acid/base balance were perfect and within normal range.  Some of the best and most priceless moments to date came that weekend!!  For the first time, I was able to hold Caleb and stare at his adorable little face with no breathing tube.  I watched him breathe on his own, listened to his muffled cry, and helped soothe him with a pacifier.  It was then that I truly realized just how far Caleb had come.

Unfortunately, this incredible step forward for Caleb came with a few setbacks and a lot of confusion.  "Complicated Caleb" had returned... 

His blood gases, while extubated, continued to prove that he was doing great with regards to his respiratory function.  However, he began having bradycardia episodes, where his heart rate would drop and become slower-than-normal and simultaneously cause a low level of oxygen in his blood (desaturation).  With the majority of these episodes, Caleb would begin breathing well before the nurse would have time to respond.  Other times, he would need to be stimulated, through rubbing or patting, until he recovered.  The confusion amongst the team of doctors set in as the bradycardia episodes ranged from hours with none to periods where they would occur every few minutes.  Sometimes totaling over one hundred episodes a day.  Over the next several days, the doctors began trying to rule out every possible cause.  An echocardiogram and electrocardiogram (EKG) were performed to check Caleb's heart function and the electrical activity of his heart.  An electroencephalogram (EEG) was performed to measure and record the electrical activity of his brain and to confirm that he was not having seizures.  A repeat head ultrasound showed reduced ventricle size and validated that the shunt was working properly. Finally, his feeds that had been increased to 12cc per hour continuously were stopped to see if reflux, which is prevalent in CDH babies, was playing a part in the episodes.  A pediatric cardiologist was consulted due to some concern over his EKG and a possible heart block, but after analyzing the rhythm of his heartbeat further they dismissed this as they believed there was another underlying issue.  As much as we longed for an explanation, we were relieved when all of the results came back normal.  The days went on and the bradycardia episodes continued...

What came next still gives me chills thinking about it.  I made my routine phone call Thursday morning around 6:30 AM to see how Caleb did overnight.  Rather than the nurse I expected, a doctor picked up and began explaining that Caleb's status had taken a turn for the worst.  His heart rate had dropped once again, but this time, he did not respond to stimulation and he coded.  They tried to resuscitate him by "bagging", but with no success they started administering chest compressions.  Thankfully, after some persistence, they were able to re-intubate and he was breathing again with the help of a ventilator.  

Caleb hasn't been himself since that morning and it was determined that his immune system had shut down due to sepsis (blood infection).  Sepsis is a condition in which the body is fighting a severe infection that has spread via the bloodstream.  While waiting for the final blood culture results, which take forty-eight hours, he had been receiving several different antibiotics since Thursday.  Now that the specific bacteria has been identified, Caleb is now receiving the antibiotic that will hopefully kill the organism responsible for his infection SOON.  Oddly enough, since Caleb has been re-intubated, his bradycardia episodes are happening much less frequently.  And, as much as I would like to say the infection was also causing the severe bradycardia episodes earlier in the week, I am honestly not convinced that is the case.   I hope I am wrong, but I can't help but think that something is being missed.  

I am puzzled with all of the events that took place this week and full of emotions as the roller coaster ride continues.  I feel helpless and I just want my very alert and happy baby boy back that I held a week ago...

Keep fighting, Caleb!!!

Picture
CPAP
Picture
Nasal Cannula
Picture
Back to breathing tube...not feeling too well!
Picture
Blue Angels from the Hopkins NICU.
Visit Caleb's Photo Album
Picture
2 Comments
Danielle
9/14/2014 12:14:42 pm

Kenny and I have been following your story and praying for your family. Even with the set-backs, he's come a long way. He's a tough little boy! Keep fighting, Caleb!

Reply
Miss Sharon
9/16/2014 09:06:55 am

Caleb,
Although you have been climbing this mountain for some time, soon you will reach the top and it will be all down hill from there. Keep fighting "Little Guy" we are all pulling and praying for you.
love you and your family

Reply



Leave a Reply.

    Archives

    April 2019
    August 2018
    May 2017
    September 2016
    April 2016
    March 2016
    October 2015
    July 2015
    May 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014


    Categories

    All
    1st Birthday
    6th Pregnancy
    Bringing Everyone Up To Speed
    Caleb & Brody Meet
    CDH Reherniation
    CDH Surgery
    Decision Day
    Extubated
    First Week Of Life
    Follow Up Appointment
    G-J Tube
    Homecoming
    Mt. Washington
    Never Be Alone Foundation
    Nitric Oxide
    One Month Old
    PICU
    Retinopathy Of Prematurity (ROP)
    Shunt Surgery
    Tour Of Hopkins NICU
    Tracheostomy
    Visit To CHOP
    Visit To Hopkins
    Visit With Another CDH Family



    eMail Tim & Candice

    Subscribe to Caleb's CDH Story

    Enter your email address:

    Delivered by FeedBurner

Caleb's CDH Story
Tim & Candice Salkeld
calebscdhstory@yahoo.com


Caleb's Visitors Since June 2014
Website by Novair Group