Look What I Can Do....

One Happy Little Boy...

Daniel Hits Double Digits!

Daniel turns 10 months old today!! Over the past month, his bottom two front teeth have come in and continues to make notions of crawling. He is also beginning to master the art of pulling himself up to a standing position. He seems to enjoy this much more than crawling. (Boy are we in trouble!)

Here are some of our favorite pictures from the last month......

"My Last Trip to Ciny for a Month - YEAH!!"

"Whatever!


"What's the View Over Daddy's Shoulder?"


"Just Jamming"

Enjoy and Happy Spring!!

HAPPY ST. PATRICK'S DAY!!

"Wishing You a Bit of Luck and Laughter"

"What's With These Shamrocks? They Never Seem to End!"

"Boy, That Milk was goooood!"

Daniel Learns to Drive

So as we waited for our appointment yesterday afternoon we sat by the Ohio River which resulted in Daniel's first driving lesson....

Yes, the parking and emergency brakes were on.

Does this Kid Love the Camera or What?

So I was trying to capture Daniel playing with his soundstage and he noticed I had the camera in my hand. Watch the video to see what happens....

Stretching is Done - For Now!!

So we are officially done with our every two week visits to Cincinnati and still have the green light to move onto airway surgery. Daniel did fabulous today. He even warmed up to the nurses and flirted a bit today. Mike actually got to hold Daniel as they put him under this afternoon. Not sure if it an experience he wants to repeat too often but the curiosity did get the best of him.

Daniel's esophagus did narrow a bit but the Dr. was totally ok with it and was still happy with Daniel's progress. So we are pretty happy!

So, we also got a little bored waiting for our surgery time so we measured Daniel. (I know - poor kid!) According to the hospital scale he is weighting in at 18 pounds but that was with clothes on and before he pooped three times. Mind you we were only waiting for an hour and a half. His feet measures 3 inches and his head is 44 cm around. I said we were bored!!

Once we get home on Friday we will post some "stupid" facts from our trips since January. Something to look forward too...... Until then!!

Thank God for The Oh Shit Bag!

All I have to say is "Thank God for The Oh Shit Bag!" For those of you who do not know what the "Oh Shit Bag" is all about, it is the bag that you carry with kids with trachs with all your "must-have" supplies in case you need something in an emergency or when you say "Oh Shit.!" Well, we had an "Oh Shit" moment on our way out to Cincinnati tonight. Not a major one but a moment.

So here's our moment - as I was getting ready to pull out the stuff for Daniel's 5:00 feeding I quickly realized that I left his food and G-Tube in our frig in Mahwah. Now it wouldn't have been a big deal but we were about two and a half hours away from home. Thus an "Oh Shit" moment. Luckily the NICU nurses provided us with all the necessary supplies and the crisis was adverted. Though we did need to stop for bottles. I was so hoping I would not need to crack into this bag but apparently I am not the best packer in the world - I also forgot socks for me for the rest of the week.

Despite my lack of brain power - the Comfort Inn in New Stanton, PA thinks we are pretty special. Upon arrival this evening we found out we were selected as "Guests of the Day." What did we get - a parking space right in front. How funny is this....

Maybe they knew it was our last trip for a couple of weeks???

Tomorrow features Daniel's last dilation!!! YEAH!!! Until tomorrow....

Daniel's Story

Since we now have a date for airway surgery, we thought it might be a good time to re-cap Daniel's adventures thus far.

Here's Daniel's Story.......

After a healthy and uneventful pregnancy, Daniel Duker was born on May 18, 2007 at 38 weeks weighing in at five pounds, four ounces. Immediately after his birth Daniel was taken to the NICU for observation. This would be the beginning of the journey to determine what exactly was wrong. The Doctors and nurses instinctively knew that something was not quite right, but needed to determine exactly what that was.

After a week of extensive testing by multiple specialists, Daniel was diagnosed with a Tracheoesophageal Fistula, better known as a TEF. TEF is a birth defect, where the trachea is connected to the esophagus. In most cases, the esophagus is discontinuous, causing immediate feeding difficulties. In Daniel’s case he had an H-Type TEF where his trachea and esophagus were attached and connected, resembling the letter H. While there are five different types of esophageal atresia and tracheoesophageal fistula, the H-Type is the rarest (0.4%).

Approximately 1 baby in 4,500 is born with some form of TEF. Nobody knows exactly what causes them and research has shown that TEF occur within the 6th week of development and may be the result of a defect in three chromosomes. They are not normally detectable through ultrasound and are usually diagnosed during the first few weeks of life. The only correction for this birth defect is surgical repair.

Daniel’s first surgery was May 25th - exactly one week after he was born. Initial postoperative results appeared promising and it seemed as if Daniel was doing well. However, one week later, on June 7th, he developed an esophageal leakage and was rushed back to the OR for a second TE repair. Postoperatively he was intubated and maintained on a heavy morphine sedation to keep him immobilized.

Again, within the week there was esophageal drainage noted in the neck wound and on June 18th, Daniel was taken back to the OR for a tracheal repair of the bronchial stump and narrowing in his esophagus and trachea. During his hospital stay Daniel developed a significant stridor (narrowing of the trachea) and respiratory distress. On June 20th, it was determined that Daniel's right vocal cord was paralyzed and he had decreased movement in his left vocal cord. In addition, he was aspirating into his lungs due to his inability to swallow.

Given Daniel's persistent respiratory distress, his vocal cord paralysis, and the inability to feed, he underwent a tracheotomy along with the insertion of a GI tube into his stomach on July 3rd.

This time his postoperative recovery went well and he was released from the hospital on July 23rd – after 64 days in the NICU.

Daniel did not come home alone. Daniel came home with an apnea monitor, a compressed air humidifier, a suction machine, and a feeding pump. Daniel is connected to the compressed air humidifier whenever he is sleeping in order to keep his trach moist and avoid any mucus plugging. Since Daniel does not take anything orally, he is fed the majority of his daily intake overnight via a continuous feed. Daniel continues to need all this equipment even today - 9 months after his birth.

Initially there was hope that Daniel’s vocal cords would come back on their own, but it has now been determined that they will not. With this knowledge we began to do some extensive research, undergoing additional testing, and traveling to specialists all over the area. After discussions with the Doctors at the Morgan Stanley Children’s Hospital at Columbia Presbyterian in New York, Children’s Hospital of Philadelphia (CHOP) and Cincinnati Children’s Hospital Medical Center, it was decided that the best option for Daniel was to travel to Cincinnati Children’s Hospital Medical Center and be seen by their world renowned Aerodigestive and Sleep Clinic Team.

After additional testing and review of the case, the team of Doctors determined that Daniel’s airway could be fixed surgically and that they would be able to remove his trach. They also believe that with time and therapy Daniel will be able to breathe, speak, and swallow normally.

The only problem was that his esophagus was narrowed and would need to be stretched before airway surgery could be performed. Since January, we have been traveling to Cincinnati Children’s Hospital every two weeks so the Doctors could perform procedures to stretch Daniel’s esophagus. As of February 20, the Doctors were pleased with his progress and were ready to recommend that Daniel move onto airway surgery.

The recommendation from the Doctors in Cincinnati to repair Daniel’s airway is Single Stage Largngotrachoplasty Reconstruction (SSLTP). SSLTP is a surgery in which the airway is made larger by placing a graft in the area that is narrowed. Most grafts are made of ear cartilage, thyroid cartilage, or rib cartilage. The Doctors have stated that the graft will be a rib graft which will be placed in the back of Daniel’s airway thus opening up his airway. Since Daniel has a tracheotomy tube, the tracheotomy tube will come out during the surgery and the hole (also known as a stoma) will be closed, making him trach-free.

There will be a horizontal incision in Daniel’s neck where the surgery will be done. Since rib cartilage is expected to be used, there will be a small incision made in his chest as well. A breathing tube (also known as an endotracheal tube or ETT) will be in place through Daniel’s nose after the surgery with the purpose of holding the airway and graft in place while it heals and preventing it from shrinking back down. It is expected that Daniel will have his ETT for a week to 10 days. The main surgery, which is scheduled for April 21st, is followed by a series of scopes (Microlaryngoscopy and Bronchoscopy) in the operating room to check that the airway is healing. It is expected that Daniel will be in the hospital for approximately one month.

DANIEL'S VOICE is a non profit foundation that was started by friends to help defray medical costs that are not covered by insurance, lodging for the hospitalization period, and any additional home health care that may be required upon his release or return trip home.

Any monies not utilized to support DANIEL'S VOICE will be donated to the Ronald McDonald House which offers housing for families and their children who are seeking medical treatments.

To make a contribution to DANIEL'S VOICE, please make the check payable to DANIEL'S VOICE and send it to:
Daniel's Voice
C/O Claire Mandel
59 North Spruce Street
Ramsey, New Jersey 07446