Isaiah's smile

August 4, 2012 I gave birth to an amazing and complicated little boy. He has changed my life forever. His name is Isaiah Alexander and this is his story.

(Medical)

Mild hydrocephalus (extra fluid on the brain)

Failure to thrive

Laryngomalacia (collapsing, narrow upper airway)

Trachealmalacia (collapsing, narrow lower airway)

Broncialmalacia (collapsing, narrow opening to lungs)

Airway stenosis (hard, narrowing of the airway)

Complete tracheal rings (extremely rare)

Aspiration due to airway anomalies

(Surgeries)
10 days old - supraglottoplasty
4 weeks old - slide tracheoplasty
6 weeks old - tracheostomy
8 weeks to 17 months - minor OR procedures for his airway
18 months - Laryngotracheal reconstruction with rib graft
22 months - feeding tube
2 years to almost 3 - minor OR procedures for his airway and GI tract

(Back Story) August 1 I went to a regular 40 week doctors appointment, had no issues during my pregnancy and that day there was no movement so I was sent to the hospital and in the ultrasound the doctor said he had severe hydrocephalus (extra fluid on the brain) and he was not going to make it past birth. I died a little right there! I was so distraught I didn’t really know what to do and my current Drs were of no help whatsoever. I was all alone and scared. I mean how do you go from a completely normal pregnancy to the baby isn’t going to make it. I was transferred to Crouse hospital to have an emergency induction and they did their own ultrasound and it showed mild hydrocephalus. After having Isaiah the NICU team deemed him okay to go to the regular nursery. He couldn’t keep his body temperature up and was sent to the NICU three times before they kept him. They didn’t know what was wrong with him but he was unable to be sent home with me. After observation and many tests, on his 10th day of life he had his first airway surgery due to laryngomalacia. He also had a CT scan of his airway and it was found that he had complete tracheal rings in more than 3/4 of his airway and his trachea was ¼ the size it should be. He was transferred at one month old to a children’s hospital in the Bronx for a major airway surgery that was supposed to fix him and he would be healthy and fine 2 weeks after the surgery. He was not! The surgery didn’t work! I was later told that that surgery doesn’t normally work on babies that little. That surgery should have not been done until he was older! Within the two months we spent in that hospital he had many failed extubations and his airway was damaged even more. They had him on fentynol for pain and gave it to him for too long. The only way I can describe how he acted was that he was like a baby born to a crack addict, which I am not. I couldn’t touch him or hold him without him going into convulsions and freaking out. I went about a month without holding my newborn! He had to have ativan and methadone to ween him off of the fentynol. No baby should ever go through being addicted to drugs, especially under a doctors care! Two weeks after his failed airway surgery he had a trach placed and was doing better but had to be on a ventilator. At 6 weeks old he was sent to the PICU at Golisano Children’s Hospital at Upstate. He lived there until he was 8 months old. Isaiah never seen the outside of a hospital until he was almost a year old. While at Golisano he was weened from the methadone and ventilator. On Isaiah’s first Christmas, Jeramiah (older brother) and I left the hospital room for 15 minutes to go get something to eat and when I returned Isaiah was purple and not breathing, out of everything else that went on previous this scared me the most! The machines were not beeping to alert the staff that there was a problem and noone knew what was going on with him. I yelled for help and everyone came running and saved my child. There was a faulty wire that made it so it didn’t beep out of the room. I will never forget that day! The PICU staff is wonderful at that hospital and they became like family. After we were discharged, we were back in the ER every other week for 6 months due to pneumonias. Isaiah just couldn’t catch a break. Isaiah has had many minor OR procedures and a few more major surgeries. He has home nursing services. He has been through many nurses. I get rid of most because of safety issues, trying to make him extremely ill to be the “savior”, hitting him, not supervising him, and nurses that just don’t fit well with him. He now has an absolutely wonderful nurse that he loves.

(Current Story) We travel to Cincinnati every 2 to 3 months for OR time, for airway and GI scopes to determine when the next major Airway surgery will be. His last was in Feb 2014. He also has a feeding tube placed because he aspirates everything taken by mouth. When he was switched to pediasure, it wrecked his stomach and he has severe reflux because of it. Since January I have made all of his feeds from regular food that he can tolerate. His stomach has healed a great deal since. Also he has made many positive changes since his diet change. Most children born with Congenital Tracheal Stenosis with complete tracheal rings taking up the majority of the trachea don’t live to the age of 3. It is extremely rare and finding information on his condition is hard. But I have researched and read everything I possibly could. He is still very critical and without the trach he cannot breathe on his own for more than a 30 seconds. I have almost lost him at least 10 times in his short life. A simple cold which is an annoyance for most parents with normal children is deadly for Isaiah.

(My feelings) Why me? Why do I have to stress every day about whether this will be the day I lose my child? I am exhausted and stressed. He does not have nursing coverage 5/6 nights a week and I have to be up with him to care for him. He needs 24/7 eyes on him supervision. I have been fired from jobs, quit jobs from him being so sick and needing so much care and hospital visits. I now work for myself, which is also a struggle. I am thankful for the help that I do get. I keep a positive attitude about things but its hard most days. I cry a lot. I have learned more than I have ever wanted to. No one should ever have to do CPR on their own child to save their life. No one should be afraid that their child is going to die every minute of every day. But I would not trade him for anyone else. I love him more than words can say. I would do anything for him and do everything in my power to keep him healthy and thriving. But that doesn’t change the fact he is still very critical and I may lose him.

Isaiah goes to preschool. he is a very happy child and always has been, no matter if hes sick or not. He is very determined to accomplish what he wants and is very independent. Isaiah is delayed a great deal, he is about 10 months old with his physical development in a 3 year old body. He has the mimd of a 3 year old though. He has a wheelchair for transportation purposes because he is not yet walking. We work on walking every day and hope he will be walking soon.

Thank you so much for reading