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Feb 21, 2018
Wyatt was diagnosed with AVSD about 3 months before he was born and with Down syndrome at birth. In the last almost six years, Wyatt has had about 20 surgeries, I've actually lost count. It has been difficult at times. As well as the medical concerns for Wyatt, the stress I experience weighed heavily on me. I forgot to share the load and suffered a mental breakdown in 2013. You are welcome to read about our trials and triumphs here. I used to say we can do nothing of ourselves and that God is our strength but now, praise the Lord, I live it! God is so good and he's always there. Even when I fall, turn away or get bitter, He is there and He forgives. Wyatt continues to get stronger every day and is walking now with occasional help. He is also talking more with the help of a "special diet" that I will explain later - the Feingold diet.
Our journey of understanding Wyatt's condition and what it means began on December 9th, 2009. I didn't fully comprehend at first how sick our little boy would be and maybe that was a blessing in disguise. After a routine ultrasound appointment we (Breanna was with me) were told to go into the consultation room because the pediatric cardiologist wanted to talk to us. There she (Dr. Fruitman) gently explained that Wyatt had a condition called atrioventricular septal defect (A.V.S.D.) and would need surgery to repair it. It is a condition where he has two very large holes in his heart. I think I took the news fairly well. I was not upset or concerned about the surgery. That was good because I needed all my attention focused on Wyatt for his first month of life. Wyatt spent that time in the hospital and one of us would go see him every day. I had to pump & bring in his milk, or David would bring it for me to give me a day off. It was a difficult time but we just took it a day at a time.
At about three weeks of age or so babies with AVSD go into what is called "heart failure". It sounds really scary but it actually just means that his heart is struggling to pump the blood around his body. Wyatt must have read the textbook because at 3 weeks and 2 days after birth he went into heart failure. He had plueral effusion which is a fluid build up in the plueral cavity surrounding the lungs. To correct this and help Wyatt the doctor prescribed Lasix, a duretic. That worked great and we got to bring our baby home. Wyatt was born in the Foothills Hospital on February 19th and stayed there for 10 days. Then he was transferred to Peter Lougheed where he stayed for 19 days. Finally he got to come home on March 18th. We were so excited! He stayed home for 10 days and we were busy showing him off. Then he got a cold which made it harder for him to breathe and when he went in to the cardiology clinic at the children's hospital for his first check-up he had to be admitted. Mommy was admitted too, to take care of him so I was "on" for 48 hours listening to monitors and feeding him. I came home Wednesday night so I could spend time with my family. It was our 15th anniversary on Thursday so I wanted to be home for that. While in the hospital that week, Wyatt had heart failure twice so his Lasix was altered to a smaller dose but more often, resulting in more per day. Finally after 5 days Wyatt came home again (April 3rd). Now we are more careful and are diligent about keeping him away from large groups of people. On the 6th Wyatt had been kind of fussy through the day and after his 2100 feed he started screaming and pulling his legs up. He had also been having some diarrea since Sunday so we called the cardiologist. She was concerned about him having a bug of some sort and maybe also being dehydrated so she suggested I bring him into emergency. After spending the night in emergency we got to see the cardiologist. It was determined that he was not dehydrated but that we should get him into surgery earlier because he goes into heart failure way too easy. The surgery had been moved up from July - August to late May, early June. Wyatt was going into heart failure on a regular basis and was very sick. He was at the maximum dose of lasix and it wan't enough so Dr. Fruitman, the pediatric cardiologist, got an audience with the surgeons in Edmonton and brought up our little buddy, Wyatt. They flew Wyatt up to Edmonton in an airplane - that's how sick he was and admitted him to the Stollery Children's Hospital. After being there for three days, admitting Bree in the Edmonton Public school system for the time we were to be there and settling in, they did another echo so the doctors could see exactly what they were dealing with and that's when they found it... tetrology of fallot. That condition was so serious that they couldn't operate on him until he grew bigger physically or until he was 6 months of age. He came home with us to grow bigger. We had a feeding tube that we had to feed him with because he was too weak to suck, swallow and breathe at the same time. We also an oxygen tank for him. Those were stressful days. We had to weigh him daily to make sure he was gaining weight and call in his weight daily, or weekly (I can't remember). To fatten up our little man, they had me add calories to his bottles by adding extra formula. Finally, Wyatt was able to go up for surgery and I believe by then I had started blogging on this.
As well as the physical problems Wyatt had experienced, he was diagnosed with Ds-ASD and ID in 2016. The Ds-ASD is Down syndrome with a co-occurring condition of Autism. The ID means an intellectual delay, I believe. Wyatt was assessed at the CDC (child development centre) because it was too hard for a regular physician or pediatrician to diagnose this disorder. More on that later. When Wyatt was four, and going to a school for children with Down syndrome, I realized that he did not act like his peers with Down syndrome. I asked his OT (occupational therapist) what she thought was wrong with Wyatt because he constantly had things in his mouth. She thought it may be a "sensory disorder". So, of course, when I got home I looked up Sensory Processing Disorder on Pinterest because, why not. The pin I saw said, "I have Sensory Processing Disorder and Autism" and it showed all the things that child doesn't like. For example, textures, loud noises, bright lights etc. I looked up Autism, because although I knew what it was, I didn't REALLY know. After I started researching, a light bulb went off. This is EXACTLY like Wyatt!! Maybe he has Autism, so I did an online test, and printed it off for my pediatrician, as well as a tonne of other tests. To be honest, I don't think he even read the reports. At the time of our appointment, Wyatt was not head banging, rocking or spinning in circles (although he DID start to do that later in his life, maybe 6 months to a year later) so the good doctor dismissed my concerns saying, it's just the Down's, Mom, don't be concerned. I said thank-you and left... A mother knows her child, fights for her child and will be a Mama Bear when she has to be. I didn't think it would serve any purpose to talk to him any more on the subject so I just switched pediatricians. The first visit was amazing and she sent the referral to the CDC immediately. We have been grateful for her guidance and expertise ever since. She knows that a Momma can be smart and really KNOWS about her child. So about half our struggles are from Wyatt's Down syndrome, eye tubes, ear tubes, and heart defect, but then there are other issues related to the Autism. Sensory issues, eating issues, light and noise sensitivity and behavioral issues, such as running away, throwing things and no focus, not looking in the eye, etc. Enjoy sharing our family's journey to wellness with Wyatt. Feel free to leave any comments or questions. It adds joy to our day and is encouraging.