Friday, April 17, 2015

April 17 - Dear Nicholas Sparks (Guest Blogger Debbie Mourtsen)

Dear Mr. Sparks,

In the summer of 1991 I was working in a Pediatric practice as a Nurse Practitioner when we happily found out I was pregnant with our first child. I remember seeing several children with congenital problems and trying to reassure myself that the odds of something like this happening to us were very slim. At 35 weeks at a routine ultrasound some of my worst fears came true when our doctor told us that he saw a problem with the baby on the scan. The heart was on the wrong side and there was a mass in the chest. We lived 5 hours from the nearest major medical center and were sent to see the specialist there the very next day. They confirmed the problem and believed it to be a left- sided diaphragmatic hernia. The decision was made for us to come back in my 39th week and deliver at the University of Utah where the necessary preparations would be made for our son's arrival. We spoke to the pediatric surgeons and they gave our son a 25-40% chance for survival because of the extent of organs in his chest. The next few weeks of waiting were long and extremely difficult.

On April 11, 1992 after a long labor and an attempt at natural delivery Alex was delivered by C-section. I will never forget hearing him cry and then the quick silence that followed as they whisked him away to stabilize him. His attending told us it took 3 adults to ventilate him. He said he was a fighter and these are the children that usually survive! The next day they decided to do the repair of the left-sided CDH. The surgery went well although they saw only a bud for a left lung. When we went to visit Alex the day after the surgery his attending was smiling and told us that the biggest chunk of left lung unfolded that he had never seen on a CDH baby. Alex began making good progress from that point on. At day 16 he was weaned off the vent and put on oxygen. After some bouts with SVT (supraventricular tachycardia) Alex was released after 6 weeks. He stayed on a monitor and oxygen for 6 months. He did well except for colds which would put him in the hospital each time. He didn't seem to have too much of the reflux problems that CDH children have so often.

At 9 months Alex began vomiting on and off and his weight dropped off. We could not find the cause although my intuition said something was wrong. Finally at a year it became an emergency situation when it was realized that the hernia had reopened (they opted to not use a graft) and a loop of intestine was partially blocked. We drove 5 hours immediately and he had surgery the next morning to rerepair the CDH. Things went well again for while until 16 months when Alex began getting hives to different foods and some vomiting was occurring. We already knew he had asthma, but on a trip to the immunologists we soon learned that Alex had life-threatening food allergies, latex allergy, and numerous environmental allergies. I had already picked up on the latex problem as well as the severe reactions to milk and eggs, but didn't know the full extent of his allergies. I do believe the latex allergy to be a result of the early repeated exposures to latex that Alex had during his surgeries and hospitalizations. It is an issue I hope that other parents of CDH children, care providers and hospitals will be more aware of and try to avoid since CDH children could be at higher risk for this allergy.

At age 2 years Alex woke up vomiting one night and became seriously ill. They life-flighted him back to Primary Childrens in Salt Lake and he had surgery immediately. It turned out the problem was a volvulus (twisted intestines) and luckily he did not loose any intestine. This was more than likely related to the previous surgeries he had. Since that time and despite 7 hospitalizations for asthma and a tonsillectomy, Alex is now a happy 5-year-old kindergartner. We deal with the severe allergies and asthma every day, but we are just so fortunate to have him with us that it keeps it in perspective. Alex takes it all in stride and is rarely upset by these "inconveniences" such as not eating certain foods or having some pets. We have learned so much from his strong will to live and his love of life. Oh and yes he still does have quite a strong will, but we are more appreciative of it than many parents!

It is true that being a nurse practitioner really helped me to advocate for Alex many times. It also helped me to identify some of his allergies and health crises before we had a life-threatening situation occur. On the flip side it also made me aware of every possible complication and risk, so much so that I had to block them from my mind or go crazy with worry. When it is your child it changes everything…you forget your profession and what you have learned. As a parent your emotions takeover and you just want to see your child be okay and to not suffer anymore pain. We are just thankful for each day we have to spend with Alex.

Written by Alex's mom, Debbie Mourtsen (Arizona)

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