Roberto Anaya, III
TrachKid Profile
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Roberto Anaya, II was born on March 2nd, 2008 after a complicated pregnancy. I had many ultrasounds and other tests done and no abnormalities were detected. He was blue and not breathing. The doctor detected a heart murmur. He was rushed to the NICU to be stablized on a biPAP-he was weaned off oxygen and TPN over 13 days. Echo revelaed Tetralogy of Fallot-my tiny baby Robert would need to grow a little and then have open heart surgery. Even though he was not eating well and having very slow breathing, we were allowed to bring him home. To make a very long story a little shorter, we were rushed to ER a couple times over the next two weeks and Robert ended up spending six months at Loma Linda Childrens Hospital-first intubated, then trached, had five surgeries, including an inguinal hernia repair and open heart surgery (VSD repair with right venticular augmentation) , then a tracheostony revision. He had a G-Tube placed. Robert had recurring pneumonias, was anemic, had four blood transfusions, and had over 123 IVs placed during his stay. He was in the Cardiac Unit for three months and was transferred to PICU after his heart was repaired. Robert needed very high ventilator settings and was in a drug induced coma to keep him breathing comfortably-he would go into respiratory distress when he was awake. An ambu bag was used many times. Robert was once on a PEEP of 16 on Assist Control- even though he had the drive to breathe,he was unable. Every time the doctors tried placing him on a home vent (ours is the Viasys LTV 1150), our son couldn't handle it and stayed on the hospital vent. As any other parent of a very sick child in the hospital goes through, my husband and I had a very difficult time watch our son not get better. We didn't know how much more our little son could take. After six months, our son's condition slowly improved. He was able to breathe with the vent while awake, he smiled, and eventually were able to bring him home. Since August 2008, he has gained weight, learned to crawl, is learning to walk, vocalizes, uses a speaking valve, and after repeat modified barium swallow studies, can taste baby food. His doctors have decreased vent settings several times and now has sprinting trials. We still have many challenges ahead since our son was born with DiGeorge Syndrome/ VCFS, but he does new things everyday. He loves to explore and play, and most importantly, my son is happy! We are so grateful for him and are amazed to watch him get better. Please don't ever give up on doing what's best for your child-I have had many sleepless nights, but I will not compromise the care of my son-others can learn from how we care for our special children. Doctors have told us,"He is the worst case of bronchial malacia we have ever seen" and now he's exceeding expectations two years ahead of schedule. We have hope he can be decannulated someday. I remember the confusion, exhaustion and frustration of learning and training other about our sons conditions, and transporting our son to so many appts, therapies. We joined Trach Kids to learn from others and to give others hope-our children can get better... ~Linda
History
- Blog
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- Member for
- 2 years 27 weeks
Location
- Country
- United States
- State/Province
- California
