Peterson Jaymarc Macaranas Leosala
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October 21, 2000, Saturday, 12:48pm; De Los Santos Hospital, Quezon City, Philippines; was the date, the day, the time, and the place when our little baby boy was born. We are his parents, daddy Peter and mommy Jardine. We named him Peterson Jaymarc, he's very healthy and cute, that makes us both cry and very thankful to God for giving us such blessing.
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Newborn
We thought that he was normal just like other newborn babies until we received the results of her newborn screening. The result informed us that he has congenital hypothyroidism, a disease in which his thyroid glands are not producing thyroid hormones which is important for the brain development during the first 2 years of his life. We and our baby PJ went through many test to confirm the result. It was true, all the tests proved that his thyroid glands are malfunctioning and so we had his endocrinologist to take good care of him. We visit his specialist doctors every month, then every two months, then every 4, just to check that the supplement of medicines will keep his thyroid hormones in normal values.
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First Birthday
PJ grew just like other normal babies with the help of his doctors and medicines. We always celebrate his monthly birthday until he reached 1 year old. We had a big jungle party for him when he turned 1, it was a very happy party for the three of us. Then, slowly he learned things normal kids do, talking, walking, playing, and a lot more. He even traveled different places here in the Philippines and he always wants to go out to malls where he can run and play.
May 31,2002, he woke up crying and acting that something is hurting him very very much. He can't explain it to me very clearly which part of his body is aching. Then he starts vomiting the milk he drunk, and his cheeks, lips and hands became pale. I started worrying and decided to bring him to the hospital. Doctors findings, he was dehydrated and had iron deficiency anemia. In the hospital, he was still vomiting even though he doesn't eat anything, he started to have a fever and seizures. And in the 4th day, he again became pale in color, he had seizures that medicines can't control anymore. Then he collapsed and was rushed to the ICU. When he underwent a CT-scan, doctors found out that he had a blood clot to the right part of his head. June 5, 2002, An emergency operation was performed, a neurosurgeon performed a craniotomy operation for 7 hours. The neurosurgeon found out that PJ has Congenital AVM (Abnormal Vein Malformation). My son was comatose for almost 3 weeks, and when he woke up we again cried for happiness. God gave him a second life. He stay alive, although at the age of 1 year and seven months our baby is like a newborn baby again.
It doesn't end with his brain operation, August 8, 2002, doctors decided to give PJ a tracheostomy because he is having a very hard time to breath through his mouth. He has a subglottic stenosis due to post intubation. He undergo bronchoscopy before and more after he was cannulated. Last March 15, 2003, his doctor tried to scope him to see if it is OK to remove the stenosis in his throat. But his arytenoids are swollen, they thought because of GI reflux, and so he was treated by a gastrologist and medicines.
May 15, 2003, again, his doctor attempt to remove the stenosis but his arytenoids were still swollen. This time they said it is because of his secretions, not in the tracheostomy but above it. He again underwent medications of antibiotics and nebulization to the tracheostomy and steroids for his mouth to lessen the secretions in his arytenoids.
July 15, 2003, doctors scope PJ for the 3rd attempt and found out that his arytenoids are now normal and he is ready for tracheal reconstruction. It was only last July 17, 2003 when my son PJ underwent a successful operation for the removal of the stenosis on his throat.
At present, we are waiting for the operation site to heal prior to another scope to see if his airways are already clear. We are hoping and really praying that in a months time from now, doctors will remove his tracheostomy, so we can teach our son PJ to speak again.
Update, November 2003: After PJ underwent Laryngotracheal Reconstruction, PJ can't eat through his mouth because the milk is coming out in his tracheostomy. We send him to his doctor and PJ is advised to undergo X-Ray for Barium Swallow. Doctors expect that PJ may have Fistula due to the last operation were his ENT Doctor split the subglottic stenosis and place a stent so that the stenosis will no longer have a chance to grow. But it doesn't seem that the Fistula is present so we are advised for another Bronchoscopy to know the main reason why the food he intakes is coming out of his trachy.
We're very sad upon hearing the news that instead of decannulating him, he will have another hole... a hole in stomach for a gastrostomy. They explain that he aquired a Bilateral Vocal Cord Paramedial Paralysis due to the AVM occured in head last June 2002. Then, PJ underwent Endoscopy for PEG insertion only last week November 5, 2003. After learning how to take care of PJ's trach, we're learning again how to take care a PEG.
We learned that here in our country, Vocal Cords Paralysis is difficult to be treated. We're planning to send PJ to USA for medical treatment but we don't have enough money to support this procedure. We hope that this web could help us look for people who have a pure heart who are willing to shoulder his expenses if he has given a chance to go to US. We have relatives who are willing to adopt him or willing to share their home for us if ever. Hope you could give us information regarding foundations in US who could help PJ.
