Caleb's CDH Story
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Caleb's First Week of Life

7/29/2014

1 Comment

 

July 19, 2014 through July 26, 2014

Caleb's status for the first few days remained the same and he was still in critical but stable condition.  The NICU doctors and pediatric surgeons decided they would focus on his prematurity and would concentrate on making him strong before they would discuss his CDH surgery.  In order for him to receive his CDH surgery, he has to be weaned slowly from the high frequency oscillatory ventilator to a conventional ventilator.  While a traditional ventilator physically inflates and deflates the lungs, the oscillator actually keeps the lungs permanently open and vibrates the air at a high rate to help diffuse gases.  Both may be used on infants in the NICU to temporarily assist newborns with breathing.  Conventional ventilators may deliver about 20 to 60 breaths per minute, while high frequency ventilators can deliver close to 1,000 breaths per minute.

Caleb was jaundice for a few days on and off, which is a yellow discoloration in his skin and eyes and occurred because his blood contained an excess of bilirubin.  Bilirubin is a yellow-colored pigment of red blood cells and excess bilirubin is the main cause of jaundice.  In order to treat his jaundice, he was placed under special lighting that emits light in the blue-green spectrum.  The light changes the shape and structure of bilirubin molecules in such a way that they can be excreted in the urine and stool.  During treatment, he wore only a diaper and protective eye patches.  Also, the light therapy was supplemented with the use of a light-emitting pad.

Wednesday, July 23rd was bittersweet.  I was discharged from Hopkins and going home to my house, bed, crazy dogs, and most importantly, Brody!!!!  We were both ready to get home (especially Tim after a few nights on a very uncomfortable pull out bed).  Sadly though, this also meant we are no longer going to be just a short walk away from Caleb.  Needless to say, the transition has been extremely difficult and emotional as we are now forty-five minutes away whenever we want to visit.  In times when we cannot be at the hospital, we are able to call Caleb's registered nurse in the NICU to check on his status (this usually happens several times a day/night).

Caleb experienced his first roller coaster ride in the early morning of Friday, July 25th.  He had some difficulty breathing through the night and he was not excreting as much urine as the doctor's had hoped.  They began administering more fluids and inserted a Foley catheter to provide relief of his urinary retention and to monitor his urine output.  In addition, they had to adjust the settings on the oscillator to help improve the effectiveness of the oxygen therapy. Throughout the night, they tested his arterial blood gas (ABG) to help measure the acidity (pH) and the levels of oxygen and carbon dioxide in Caleb's blood. This test is used constantly to check how well his lungs are able to move oxygen into the blood and remove carbon dioxide from the blood, as well as to determine his general metabolic state.  Since his condition had changed over night, we received a phone call from the doctor at 7:30 am and our hearts dropped.  Luckily, when we arrived at Hopkins that morning, he was much more stable.  However, it was extremely scary when we walked into his room and his oxygen level, which had been 25% (room oxygen is 21%) when we left Thursday night, was at 100%.  After several hours, they slowly weaned the oxygen back down and the fluids had begun to kick in and his urine output had increased tremendously.  The doctor's believed that this could have been a result of adjusting the oscillator settings down too fast and have decided that any changes will be made more slowly going forward.  One of the NICU sayings for Caleb is "slow and steady wins the race."

The rest of Friday and Saturday were good days and Caleb remained stable. We decided to leave the hospital at a normal hour on Saturday so we could spend some quality time with Brody.  We took him to the pool and finished the night off by celebrating Caleb's one-week-old birthday by singing "Happy Birthday" and eating a big decorative iced cookie with the family.  

We are beyond thankful for the overwhelming support we have received from our family and friends during this very difficult time.  Although the struggles to understand and comprehend everything happening to Caleb are endless, the calls, text messages, visits, meals, and gifts have helped get us through each day. We can only hope that we are lucky enough to share all of these precious moments with Caleb one day in the future.
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1 Comment
Michelle
11/5/2014 07:19:31 am

I don't know you personally but ask about you everyday. I work with your sister and she has shared your story. I was in no way prepared for what Mason went through, I had him at 36 weeks 6 days, at 32 weeks my perinatologist (since I'm diabetic considered high risk) thought Mason had coarctation of the aorta so we thought yes an 8 day stay, no open heart surgery was ok. My son Mason was born 7/29/14 with CHD/ he was missing the pulmonary artery leading from his heart to his right lung, he had a lobectomy(to remove the right middle lobe of his lung), he had pulmonary edema, nissen surgery, g-tube, born with bilateral hydronephrosis due to posterior urethral valves. He had open heart surgery to repair the pulmonary artery but 2 days later the vessel UMMC surgeons created no longer supplied blood flow to his right lung. So the surgery that doctors thought he needed was not because he's still here now with only 1 1/2 lung. He just came home 2 weeks ago on the nasal cannula and g-tube for feeding. He has a long road ahead of him possibly another heart surgery. I just want to give you some hope and prayer. I know exactly what you're going through.

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Tim & Candice Salkeld
calebscdhstory@yahoo.com


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