Parker Mackenzie Izzo
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Parkers Story:
It took a year, but seemed like an eternity to complete our family with the
conception of our child. We traveled a long road of infertility treatments
and now were eagerly awaiting the birth of our second child..... a son.
August 16th, 2001 at 11:21 AM, Parker Mackenzie Izzo was born. He weighed 6lbs. 12 oz, and was delivered c-section at 39 weeks due to his breech positioning. Our miracle baby was finally here. We were thrilled!!!! As they took him from me to be weighed and cleaned it was there at that second we became concerned. His coloring was blue and his cry was weak. He sounded somewhat hoarse and made a slight squeaking noise. As the days passed in the hospital we continued to question his squeak and were reassured his stridor (as they called it) would go away in time, with growth. We went home uneasy, but had confidence that he would out grow this in time. Things worsened at home and when Parker was 6 days old we pushed and got a referral to a specialist for a consultation. After our initial visit it was apparent we were not leaving and our son had medical concerns. We were told he NEVER should have left the hospital after his delivery. Emotions began to take a front line during such an uncertain time.
A Bronchoscopy was done the next day and found Laryngomalacia, Micrognathia and glossoptosis. (Parker has often been referred to as a PRS like baby. He does not have a cleft pallet). He was obstructing on his tongue and that's why he had the terrible stridor noise. We were sent home with a pulse oximeter and oxygen, were CPR certified and had such concerns for his future. Several hospital stays throughout the next months made it very apparent that Parker needed something more to help him through this time until he could "grow out" of his condition.
We weighed several options and decided on a procedure called a button, or a lip tongue adhesion. They literally tied his tongue to the skin behind his lower lip and in front of his bottom gums. This pulled the tongue forward alleviating the airway problems. The surgery was hard on my husband and myself due to the choices we were making for another persons life. The swelling was awful and he came out of surgery so drugged. Eating was our next tackle and with a swollen tongue and lips....well he was pitiful.
A couple days passed and things got a little better and just as we thought we were going home they bottom fell out and he got 10 times worse. His retractions in his chest got worse, his stridor became unmanageable and he looked as though he was struggling for life. Another bronchoscopy was done to see what changed or what had happened. That's when they found his vocal cord paralysis. His #1 problem was this and it was uncertain how it happened. His sedation during the first bronchoscopy masked the paralysis due to their very slight movement because of the med's.
At that point on November 2, 2000, Parker had his trach put in. He had three upper airway issues that took control of his life and wouldn't let him grow physically or developmentally any longer. He was three months old and laid flat on his back using every effort to breath. After his trach, I was so scared to see him. We visited the PICU, my husband and I hand in hand expecting the worse only to find a beautifully pink baby breathing on his own with only a humidifier collar on. He looked at such peace and it was then we knew the right decision had been made. Our beautiful baby now had a chance to breath normally.
Parker is now almost 7 months old and until recently was approximately 2 months behind developmentally. He is showing the world his determination and desire to live. He is sitting with a little help, eating baby food, drink a bottle with a pigeon nipple, developed an air leak and cooing up a storm. He is catching up to age appropriate development very rapidly and is scheduled for his first bronchoscopy April 10,2001. We are excited to see the progress he has made and are anxious to see what the vocal cords are doing. What seemed to start out as such a sad story is now a wonderful testimony to Gods unconditional healing and his undying love for his children. Our angel baby, Parker I pray can be a testimony for others as to Gods blessings in all of our lives.
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Update: May, 2001
Parker had his first scope on April 19th, 2001. We were very anxious to see how things were progressing for him and hopeful for a plan for his future. The scope showed the jaw had grown to better accommodate the tongue and therefore his obstruction was very minimal. The laryngomalacia is still there and the thought is that his body is using this as a protective matter. The malacia is flopping inward towards the cords, protecting him from aspirating. So as terrible as it sounds, the laryngomalacia may be a good thing for him. His cords......well not much change. He has one side that is "not" moving at all and the other is only moving slightly.
Parker's developmental progress is wonderful!! He is now 9 months old, 18 and 1/2 pounds and eating very well by mouth. He is sitting great and standing. He is thinking about crawling. He has the position but not the movement. Ha, Ha!!! He's really trying hard. He is using the Passy Muir with a little modification. We have put a small hole in the side of the valve allowing him to be able to wear it without any difficulty. This has been wonderful. To hear his voice is a true treasure!!!
Our plan for the future....we take it one day at a time with God's guidance. We are thankful that one day Parker will be trach free. Until then we continue to talk with other parents with similar situations and are planning a visit to Dr. Robin Cotton at Cincinnati Children's Hospital in August. We are very eager and excited to get a second opinion.
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UPDATE: April 2002 - Parker visited Dr. Cotton in May of 2001. We didn’t find any new news and decided to continue our treatment here locally in North Carolina. We love our Doctors and are very thankful for there knowledge.
Parker is 20 months old and walking, running, talking, screaming, and keeping Mommy, Daddy and his sister “VERY”
busy (We love every minute of it). He continues to develop right on target. Parker started wearing his Passy-Muir Valve all day on Christmas Eve 2001. He’s done great with it. He doesn’t sleep/nap with it on, but does wear it all day if he’s well. We’ve found sometimes during an illness it’s best for him not to wear his valve. This was a long road traveled to get him wearing the valve, but I’m glad we pushed forward. Sometimes it seemed we took one step forward and two steps back.
But… time prevailed.
Parker has been very healthy and was scoped in October 2001. One of his cords
is moving almost 100% correctly and the other is still moving just not correctly. We were very excited from these results. He will be scoped again April 23rd, 2002. We are very anxious to see these results. He has progressed tremendously. He is a “trach puller outer” unfortunately, but this is how we learned his cords were healing. He now can go periods of time without his trach in. I’ve attached a picture of one of his times with it out to show how he does and how proud I am of him. He’s blowing a whistle in the picture. His favorite picture pose is “CHEESE” as you can see. It’s hard to get him not being a ham.
We are so thankful Parker has progressed as he has and are hopeful for decannulation the end of the month. Parker has been a true blessing to our family. We enjoy his animation and love for life.
UPDATE: September 2002 - In April, Parker was unable to be successfully decannulated due to the improper movement of his vocal cords. That was a tough time for us. We really went this time expecting decannulation. We were told his cords were "not" moving at all. Just 6 months earlier we were told one was moving almost perfect and the other barely moving. This was progress, but now we started feeling defeated.
Parker turned 2 on the 16th of August and is so busy. He is doing extremely well and as of last week has "graduated" once again from speech. Amazing to me that a little guy with Vocal
Cord Paralaysis/ Paresis can vocalize so well and be age appropriate with speech. We are very thankful and feel truly blessed.
After much research and lots of soul searching we decided to take Parker back to Cincinnati. We need to see Dr. Cotton. He will be going September 26th and 27th, 2002. We are very eagerly awaiting this visit. I was able to talk and update Dr. Cotton on the phone about Parker. He said we may be to a point where we can consider surgical intervention. Time will tell.
Update - Novermber 2002: After our visit in September to see Dr. Cotton, we all discussed Parker and his continued care and decided that the vocal cord lateralization would be the best thing for him. So on October 24th, Parker had the lateralization surgery. An incision was made right above the stoma, level with the top of his trach and his right vocal cord was tied back. He has done remarkably well. It took about 2 weeks for his secretions to become manageable again. We were suctioning 4 to 6 times an hour during these two weeks. His vocals are slowly coming back. He's very hoarse and has no vocal strength. This, Dr. Cotton said will come in time. He said it would take 6 months to know what vocal quality Parker will have. He is wearing his Passy-Muir valve again. He wasn't to wear his valve for 2 weeks after the surgery so starting to wear the valve again is very new. We were told he'd have to build tolerance again to wearing it. Each day he wears it longer. We are very excited that we can "see" and "hear" his air exchange quality improvement. Our follow up visit is December 12th. After this visit and scope Parker should come home with a cap on and then our next visit should be a decannulation!!
Update - May 2003: Parker went back for a trial capping 6 weeks after his lateralization and was unable to be capped. It was thought that the aryetnoid area is still too bulky and some laser work needed to be done to correct and open up his airway more. In February Parker had some of his aryetnoid lasered and a stent was placed. He did not do very well with the stent placement. He got sick and had a hard time breathing. We were thankful this only lasted for 13 days. The stent was removed and a capping trial was tried. He went home capped and was capped 13 days and became very sick. He had strep/ pnemonia and had it in his blood stream. This was a difficult time and Parker stayed in the PICU for 3 days.
He is now home recovered well and we are awaiting our next visit to Cincinnati on May 16th for a follow up scope. We are all very confused and left scratching our head as to Parker's treatment. He should have been decannulated by now and yet we sometimes feel we're just at the beginning.
His voice quality has just started coming back in April 2003. We were starting to think he was never going to talk. He does use a voice they call a buckle. Kind of a
Donald Duck voice, this is behavioral and should go away as his voice quality returns. We are very anxious to see what Dr. Cotton finds on our visit in May. We keep our spirits high and our hopes strong that decannulation is only a short time away.
News Flash! Parker Wins Passy-Muir Christmas Photo Contest!
Update October 2003: Parker was decannulated September 5th!
I would love to chat or help anyone I can with questions or concerns. Please e-mail me at coryizzo@bellsouth.net.
