Yuan is celebrating his birthday on June 9 and I'm very excited to hold a small party for him. Both to celebrate his birthday and as thanksgiving for his recovery.
The theme is going to be Thomas and Friends. Last year, it was Cars (Disney), his first love. Now its Thomas because he became addicted to it since December 2009. Although, his obsession with Thomas ended last April, it is still the perfect choice for his birthday. There were many fine memories because of it. His toy collection, our youtube sessions, our trips to Toy Kingdom at many SM malls and at Trinoma's Toys R Us. Moments that made him really very happy.
Yuan's mixed portrait made by my friend Jandy
Thanks, Jandy!
Monday, May 31, 2010
Monday, May 24, 2010
Yuan's Kawasaki Disease story
It was six months ago when I first heard 'Kawasaki Disease' mentioned. There was a slight possibility that my son Yuan, then two years old, had it, said his assigned pediatrician at Meycauayan Doctors Hospital (we had to take her because of our Medicard). Unfortunately for us, the doctor did not pursue this possibility and instead focused on the minimal UTI found in Yuan's lab results.
His fever started on a Wednesday afternoon. We brought him for checkup the next day and he was given medicines to stop the fever. We were scared that he might get dehydrated as he was vomiting after taking his meds so we decided to have him confined in a hospital the day after.
Yuan got admitted due to fever, sore throat, and extremely red lips on November 20, 2009, the third day of his fever. His rashes came hours later. It was round-the-clock emotional pain for my husband Paul and me seeing our baby being traumatized due to IV insertions and medicines (antihistamines, antibiotics) which were not necessary at all as we later found out. If I remember correctly, he had a total of seven shots at IV insertion. All he could do was shout "go home" and "ipit" while he was being held by us together with the nurses against his will.
This "ipit" word stuck as he endured the pain he was experiencing. "Ipit, ipit" he complained as he tried to verbalize what he was feeling inside. It was very sad to know that this ipit word became part of his first words, along with mommy, daddy, oh no, Thomas, doughnut, etc. We had to regularly scratch his hands and feet to pacify his itchiness (which was joint pains as we realized later) and put the TV on cartoons so he could forget about his misfortune. He got discharged on Nov. 25 because he had no more fever and but was still looking very sick and weak.
Three days after being discharged from the hospital, we brought him to a follow up checkup to his real pediatrician Dr. Ricky Gonzales who listened as we shared our observations with Yuan: his weird eyes, his difficulty in walking, his chapped lips, his itchy hands. Again, we heard the Kawasaki Disease possibility but this time, our trusted pediatrician acted on it. Little did we know that this would be a much more painful period in our lives.
Doctor Ricky told us to immediately go to a good pediatric cardiologist to rule out KD. Luckily, Dr. Lulu Casas' clinic was a few minutes away from his clinic, and we got there almost instantly. It was a Saturday morning, I was on my way to work after Yuan's supposed follow up checkup. My husband and I were looking forward to spending a quiet Sunday at home after six days of our baby's hospitalization the previous week.
Doctor Casas immediately checked Yuan's hands and feet and counted the days on the calendar beside her table after reading the referral slip Dr. Ricky gave us. In our hearts and minds, we wanted Dr. Casas to tell us that 'hey your son has no Kawasaki Disease'. But instead she scheduled Yuan's ESR, CBC, and 2D ECHO tests the next day. Plus, she advised him to take aspirin ASAP.
Although we were very worried about Yuan’s condition, that night we brought him to the house of my mother-in-law for a get-together before my brother-in-law, David, goes back to Abu Dhabi where he’s working as a nurse. For a couple of hours, he forgot his sickness and played with his cousins Paolo and Denise. They kept running and laughing and as much as we wanted to stop them for Yuan’s safety, we were glad that he enjoyed this night well because the next day and the coming days would again be difficult on him.
On Sunday, we were waiting for the inevitable. Dr. Casas did Yuan's 2D Echo and she studied his lab results carefully. His infection level was still very high confirming the presence of the disease. After the 2D Echo battle where Yuan cried nonstop, we found out that he had inflamed heart vessels. We needed almost a hundred thousand pesos immediately for his IVIG treatment and hospitalization at the Heart Center for the infection to subside and help control the inflammation.
Everything went blurry as we walked out of PrimeHealth Clinic at SM City Marilao. I couldn't hold my tears any longer as I waited for my husband to get our car from the parking lot. All my mama's questions went unanswered as we rode our car. I just cried while hugging Yuan in the passenger seat who fell asleep after all the tests he had undergone. I could feel Paul holding his emotions while he was driving knowing that as in the past week, he had to be strong for me when I felt like crying and vice versa.
When we got home, Paul broke down into tears but this time I couldn't appease him as we both were at our weakest. It was very difficult to accept that our two year old charming baby had this heart traitor disease. That we might have lost him through a cardiac arrest without knowing the cause. That we found out about his sickness only on the 11th day of its onset, past the 10 days "less risk" stage of KD. That he had to be hospitalized and had to endure the process all over again.
After getting out our hurtful feelings and anger on Yuan's previous pediatrician who failed to diagnose him, Paul immediately facilitated the pickup of our baby's IVIG treatment scheduled at 11:00PM that night as we had to go to the Heart Center early morning.
We packed his milk and clothes, his Cars toys, his Madagascar and Thomas CDs, his favorite Cookie Crisp cereal and chocolate drinks, and got ourselves ready for our three-day hospital stay. While Yuan was asleep, I texted friends and asked them to pray for him.
On the way to the hospital, we brought the cooler where the 10 vials of IVIG were placed. Good thing Yuan was able to relax for a few hours in his room before IV insertion.
Thank God the treatment went smoothly. Yuan began his on November 30 at around 1:00PM and finished the next day at 5:00AM. While I dozed up as early as 9PM, Paul stayed awake to finish the ordeal.
Noticeably, Yuan's colors came back showing the immediate effects of IVIG. In the morning, this little patient and I were able to visit the hospital's playroom where luckily he found a Thomas and Friends medium set toy which kept him busy the whole day.(Thomas and Friends also became his companions during his months of recovery at home).
With Dr. Casas' order, Yuan got discharged on Wednesday, Dec. 2, the date of our 3rd wedding anniversary. It was truly a lovely day for us as we excitedly left the hospital and brought him home with lots of packed energy and enthusiasm for play.
He continued to take his aspirin for several weeks thereafter. He got traumatized with all the treatments and medications that when he finally finished, he didn't want to take even his vitamins any longer.
While waiting for his 2D Echo check three months after he began to suffer from KD, we closely monitored his activities preventing him from tiring too much as he might have a hard time breathing. His energy came back much easily. But you can still feel the sadness in him sometimes. When he asked me and his dad for buhat, we instantly comply. He became clingier but we understand.
The months of January and February quickly passed. It was time for his 2D Echo test. "No more ipit, no more tusok," I told him. Early March, Yuan bravely sat down on the bed while Dr. Casas checked his heart.
A shower of relief was what we felt as Dr. Casas confirmed that Yuan's heart is doing well. Yuan gladly showed his hands and feet to her doctor. Happy and healthy as opposed to sick and sad, words he has already added in his vocabulary.
As advised, Yuan still has to undergo yearly 2D Echo for monitoring. Dr. Casas said that there are cases when KD patients get heart complications only years later after its onset. But it was a blessing for Yuan to be clear from heart problems after months in the dark. It's enough.
At times, when Paul and I watch Yuan sleep in bed and we remember his KD experience, tears still flow down our eyes. Yes, the pain is still there, but our faith in God tells us that all's well.
It was painful to relive this story but in so doing, I'd like to share this hoping that more information will be available about this rare Kawasaki Disease. I hope to help other parents like me who might have to face this hurtful journey at one point in their lives.
His fever started on a Wednesday afternoon. We brought him for checkup the next day and he was given medicines to stop the fever. We were scared that he might get dehydrated as he was vomiting after taking his meds so we decided to have him confined in a hospital the day after.
Yuan got admitted due to fever, sore throat, and extremely red lips on November 20, 2009, the third day of his fever. His rashes came hours later. It was round-the-clock emotional pain for my husband Paul and me seeing our baby being traumatized due to IV insertions and medicines (antihistamines, antibiotics) which were not necessary at all as we later found out. If I remember correctly, he had a total of seven shots at IV insertion. All he could do was shout "go home" and "ipit" while he was being held by us together with the nurses against his will.
This "ipit" word stuck as he endured the pain he was experiencing. "Ipit, ipit" he complained as he tried to verbalize what he was feeling inside. It was very sad to know that this ipit word became part of his first words, along with mommy, daddy, oh no, Thomas, doughnut, etc. We had to regularly scratch his hands and feet to pacify his itchiness (which was joint pains as we realized later) and put the TV on cartoons so he could forget about his misfortune. He got discharged on Nov. 25 because he had no more fever and but was still looking very sick and weak.
Three days after being discharged from the hospital, we brought him to a follow up checkup to his real pediatrician Dr. Ricky Gonzales who listened as we shared our observations with Yuan: his weird eyes, his difficulty in walking, his chapped lips, his itchy hands. Again, we heard the Kawasaki Disease possibility but this time, our trusted pediatrician acted on it. Little did we know that this would be a much more painful period in our lives.
Doctor Ricky told us to immediately go to a good pediatric cardiologist to rule out KD. Luckily, Dr. Lulu Casas' clinic was a few minutes away from his clinic, and we got there almost instantly. It was a Saturday morning, I was on my way to work after Yuan's supposed follow up checkup. My husband and I were looking forward to spending a quiet Sunday at home after six days of our baby's hospitalization the previous week.
Doctor Casas immediately checked Yuan's hands and feet and counted the days on the calendar beside her table after reading the referral slip Dr. Ricky gave us. In our hearts and minds, we wanted Dr. Casas to tell us that 'hey your son has no Kawasaki Disease'. But instead she scheduled Yuan's ESR, CBC, and 2D ECHO tests the next day. Plus, she advised him to take aspirin ASAP.
Although we were very worried about Yuan’s condition, that night we brought him to the house of my mother-in-law for a get-together before my brother-in-law, David, goes back to Abu Dhabi where he’s working as a nurse. For a couple of hours, he forgot his sickness and played with his cousins Paolo and Denise. They kept running and laughing and as much as we wanted to stop them for Yuan’s safety, we were glad that he enjoyed this night well because the next day and the coming days would again be difficult on him.
On Sunday, we were waiting for the inevitable. Dr. Casas did Yuan's 2D Echo and she studied his lab results carefully. His infection level was still very high confirming the presence of the disease. After the 2D Echo battle where Yuan cried nonstop, we found out that he had inflamed heart vessels. We needed almost a hundred thousand pesos immediately for his IVIG treatment and hospitalization at the Heart Center for the infection to subside and help control the inflammation.
Everything went blurry as we walked out of PrimeHealth Clinic at SM City Marilao. I couldn't hold my tears any longer as I waited for my husband to get our car from the parking lot. All my mama's questions went unanswered as we rode our car. I just cried while hugging Yuan in the passenger seat who fell asleep after all the tests he had undergone. I could feel Paul holding his emotions while he was driving knowing that as in the past week, he had to be strong for me when I felt like crying and vice versa.
When we got home, Paul broke down into tears but this time I couldn't appease him as we both were at our weakest. It was very difficult to accept that our two year old charming baby had this heart traitor disease. That we might have lost him through a cardiac arrest without knowing the cause. That we found out about his sickness only on the 11th day of its onset, past the 10 days "less risk" stage of KD. That he had to be hospitalized and had to endure the process all over again.
After getting out our hurtful feelings and anger on Yuan's previous pediatrician who failed to diagnose him, Paul immediately facilitated the pickup of our baby's IVIG treatment scheduled at 11:00PM that night as we had to go to the Heart Center early morning.
We packed his milk and clothes, his Cars toys, his Madagascar and Thomas CDs, his favorite Cookie Crisp cereal and chocolate drinks, and got ourselves ready for our three-day hospital stay. While Yuan was asleep, I texted friends and asked them to pray for him.
On the way to the hospital, we brought the cooler where the 10 vials of IVIG were placed. Good thing Yuan was able to relax for a few hours in his room before IV insertion.
Thank God the treatment went smoothly. Yuan began his on November 30 at around 1:00PM and finished the next day at 5:00AM. While I dozed up as early as 9PM, Paul stayed awake to finish the ordeal.
Noticeably, Yuan's colors came back showing the immediate effects of IVIG. In the morning, this little patient and I were able to visit the hospital's playroom where luckily he found a Thomas and Friends medium set toy which kept him busy the whole day.(Thomas and Friends also became his companions during his months of recovery at home).
With Dr. Casas' order, Yuan got discharged on Wednesday, Dec. 2, the date of our 3rd wedding anniversary. It was truly a lovely day for us as we excitedly left the hospital and brought him home with lots of packed energy and enthusiasm for play.
He continued to take his aspirin for several weeks thereafter. He got traumatized with all the treatments and medications that when he finally finished, he didn't want to take even his vitamins any longer.
While waiting for his 2D Echo check three months after he began to suffer from KD, we closely monitored his activities preventing him from tiring too much as he might have a hard time breathing. His energy came back much easily. But you can still feel the sadness in him sometimes. When he asked me and his dad for buhat, we instantly comply. He became clingier but we understand.
The months of January and February quickly passed. It was time for his 2D Echo test. "No more ipit, no more tusok," I told him. Early March, Yuan bravely sat down on the bed while Dr. Casas checked his heart.
A shower of relief was what we felt as Dr. Casas confirmed that Yuan's heart is doing well. Yuan gladly showed his hands and feet to her doctor. Happy and healthy as opposed to sick and sad, words he has already added in his vocabulary.
As advised, Yuan still has to undergo yearly 2D Echo for monitoring. Dr. Casas said that there are cases when KD patients get heart complications only years later after its onset. But it was a blessing for Yuan to be clear from heart problems after months in the dark. It's enough.
At times, when Paul and I watch Yuan sleep in bed and we remember his KD experience, tears still flow down our eyes. Yes, the pain is still there, but our faith in God tells us that all's well.
It was painful to relive this story but in so doing, I'd like to share this hoping that more information will be available about this rare Kawasaki Disease. I hope to help other parents like me who might have to face this hurtful journey at one point in their lives.
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