My sweet Cody

Hello.  It has been a tough couple of months and very busy so I have not had a chance to write.  At the end of March, Cody had an appointment with ENT.  They did a bedside scope in the office to see if they could see anything that would be causing him to be choking and coughing every time he ate and why he wasn’t gaining any weight.  They saw that Cody had a glottic web and this would explain why his cry was so hoarse sounding.  On April 3^rd, we went back to Boston for an appointment with cardiology and for Cody to have a swallow study to see if anything else was going on.  We saw the cardiologist and besides his poor weight gain, they were happy with what they saw.  They said he sounded good, he looked good and it’s safe to wait a little while longer before they decide if he needs to have open heart surgery.  This was a huge relief. 

     We were all happy with that appointment and moved on to the swallow study, expecting good results.  I began feeding Cody while they did x-rays and videos of him swallowing.  He coughed and choked a little but nothing major.  When I looked at the doctors and the x-ray techs they all seemed concerned and said they were going to call the doctor to discuss it before we could go anywhere.  From there, we had to sit in a small office while the nurse stared at Cody, and told us we couldn’t feed him.  I kept hearing them say that there had to be a nurse with him at all times.  They told us that he was aspirating every thickness they tried but I didn’t know exactly what that meant or what was going to happen.  After the doctor called back, they told us we were going to be admitted.  I never expected this.  I started calling my family to try to find somewhere for Hailey to go.  Thank god for my amazing family who is always there to help.  It took a long time for us to finally get in a room and by this time Cody was pretty hungry.  They finally came in and put in a feeding tube but then we had to wait for them to come take an x-ray to make sure it was in the right spot before we could give him anything to eat.  Hailey was definitely sick of being at the hospital by this time.  Ryan brought her home for the night while I stayed with Cody and luckily, Ryan got the next two days off to be with us.  We saw so many doctors I couldn’t even keep track of who was who or what department they were from.  We saw several different doctors from ENT who all decided to push the bronchoscopy up and do it that Friday (it was scheduled for the following Thursday). 

Ryan and I were sitting there with Cody on Thursday night around 7pm and the doctor on the floor came in to tell us Cody’s genetic testing had come in that he had done when he was in the NICU after he was born.  She said that she felt like she should tell us because she had seen the results rather than waiting for genetics to tell us the next day, especially because I had asked the pediatrician that morning if they were in yet.  She pulled a chair up and sat with us and right then and there I knew something was wrong.  She said “Your son is missing part of chromosome 22, meaning he has digeorge syndrome, 22q11 deletion or velocardiofacial syndrome.  There are many names for it and many symptoms.”  I didn’t know what to say.  After Cody had seen ENT and they told us he had the glottic web, I looked it up and 22q came up in many cases.  The more I read about it, I noticed Cody had some of the symptoms but I didn’t want to believe it.  When I heard the doctor tell me that he had it, I just wanted to cry.  This meant that not only does Cody have a heart defect, but he could develop any of the 197 other symptoms that go along with it.  Ryan and I didn’t really speak after she left the room, we both googled it (although I shouldn’t have).  I read so many things I wished I hadn’t but this was something I had to educate myself on and something I need to know as much as possible about so I can help my son as much as possible.  At that moment, I knew we would have a long road ahead of us but I knew we could get through it.  My boy is so strong and can fight through anything. 

The next day, genetics came in and explained 22Q to us in a little more detail and gave us some handouts on it.  They said that Ryan and I should be tested because about 7-10% of kids with it have a parent with it.  They also said we should see many other specialists to make sure Cody doesn’t have anything else going on.  That day was so busy it’s kind of a blur.  He had an ultrasound of his kidneys and spine which showed he has bilateral hydronephrosis but his spine is fine.  This meant we had to follow up with urology.  He had blood taken to check his immune system and his t cells were low so that meant we had to see immunology and he can’t have any live vaccines.  He had his bronchoscopy that day too and they were able to cut the glottc web.  Cody now has a little voice and it is so sweet.  We also had to see an eye doctor who said his eyes are a little under developed, early intervention who is working with him on development, GI to help with the feeding tube and hopefully put a G tube in soon, Nutrition to help us manage how much he should be eating, and cardiology for his heart. 

He is doing well.  He is gaining weight slowly but surely and we will be having another swallow study done next week to see if he is still aspirating.  He is having another bronchoscopy the same time he has the G tube placed as well as an echocardiogram.  If the echo shows that the VSD has not gotten any smaller, they will do surgery.  For now, we are all praying that doesn’t need to be done.  Please continue to pray for my little superman and help me spread awareness for 22Q so that someday they will test all babies for it, as it is the second most common genetic disorder after Downs Syndrome.