|Cutting her birthday cake in the ward..
On Easter Sunday, Daddy was supposed to serve in the Worship Ministry in church and we had planned to go to the House of God to celebrate Easter in our best dressed clothes but these plans never materialised. Early in the morning, when Dana’s high fever cannot be subdued even with combination of paracetamol, ibuprofen and suppository given by our paediatrician, we knew something was very wrong and we rushed her immediately to the A&E department of KK Women’s and Children’s Hospital.
At the A&E, we were told that Dana could be having Kawasaki Disease. The term struck fear in our hearts as we’ve never heard of Kawasaki. A series of questions engulfed our minds. Kawasaki? What is it? It is treatable? Is it life-threatening? How did Dana contract Kawasaki? What Dana had to endure next to combat Kawasaki proved to be too traumatic for any 2-year olds.
We were told Kawasaki is disease is neither rare or common in Singapore but we are the highest country in the world with the highest incidences (outside of Japan). As information were scanty, we researched the web on our own on our nifty Iphones and found out that Kawasaki is an illness that involves the skin, mouth, and lymph nodes, and most often affects kids under age 5. The cause is unknown, it is not infectious but if left untreated, can lead to serious heart complications.
As there are no specific laboratory test for this condition, docs can only make a diagnosis clinically (by medical symptoms). Typically, a child with Kawasaki will have five days of high fever plus display 4 out of 5 of the following diagnostic criteria: (1) cracking of the lips; (2) rash on the trunk; (3) swelling of the hands or feet; (4) red eyes (conjunctival injection) (5) swollen lymph node in the neck (of at least 15 millimeters).
At the point of admission, Dana only has 3 out of the 5 symptoms (she has been having fever at nights, her toes and fingers started to swell while we wait at A&E, she’s been complaining of pain in her lymph node on her right neck). However within hours of admission, she started to develop very painful dry, cracked lips (leading to bleeding on her entire lips) and rash on her thighs and back.
Since docs now are more certain that Dana indeed has Kawasaki, they advised us to commence treatment the next day(on Dana’s 2nd birthday). On Dana’s 2nd birthday, she underwent 15 hours of Intravenous Immunoglobulin (IVIG) transfusion and was given a high dose of aspirin to reduce the risk of heart problem (This aspirin therapy will continue even upon discharge when we return home, for another 2-3 months).
The past 3 days’ fight against Kawasaki made our good-natured daughter very irritable and extremely fretful. She puts up a strong struggle and screams in fear at the mere sight of any medical staff who steps into our ward. The flurry of blood tests and physical medical examination which Dana were subjected to also made her extremely anxious, angsty and paranoid. All these must have stemmed from the traumatising pain inflicted on her from the insertion of the IV plug on her right vein (where she was bound up tightly in a towel and pinned down by the doctor and nurses) :(. Out of self-preservation, she cries and screams to vent her fear, frustrations as there were no utterances adequate enough to express how she is feeling. 🙁
As I sit here in the ward typing this blog entry, Dana’s having recurrent nightmares shouting “I don’t want!” and “I want to go home!” 🙁 As her parents, it tears our hearts into a million pieces to see our child suffer yet not being able to do anything to take their place. We can only entrust her into the hands of God, believing and calling upon God’s resurrective power to set Dana free from this painful ailment.
Throughout this trying and stressful period, friends and family members rallied around us. There were relatives who rushed down after work to give us moral support at the ward (even when we told them not to); friends who constantly smsed/called us and posted encouraging words on Facebook to tell us they are praying and fasting for Dana; family members who made daily long distance calls from overseas just to find out how we are; forum mummies who came together to order a hamper to show their love for our family. Another forum mummy turned friend specially carved out time this morning admist her busy schedules to visit Dana at the ward, bought her lots of healthy snacks, prayed with us and blessed our family with a love gift. Just this evening, an ex-church mate took a cab all the way from her home in SengKang (along with her hubby and her 1 yr old daughter) to deliver a toy to cheer Dana up and to pray with me. The love of so many earthly angels is God’s way of telling us not to give up hope, that He is with us through it all and He will prevail over this illness.
With so many people rallying behind us, we had to stay optimistic and make the best use of the resources we have to make the hospital stay less traumatic for Dana. On her birthday yesterday, we sang birthday song to her in our little room with a small cream cake given by the hospital. We start each day by bringing her down to the playground for indoor rides; we indulged her in her favourite snacks (yakult, raisins, lollies, juices); we bought her new toys (a dollhouse! and a steering wheel) from the shops here at KKH; we brought along her fav toys from home to give her a sense of nolmacy and security; we showed her videos of her schoolmates, of her Princess Cupcake Party which just took place on Good Friday on our laptop. At night, we played the song “Jesus Loves Me” over and over again on the CD player, to soothe her spirit as she sleeps and perhaps to convince ourselves that Jesus is a good God, He is in control and He will let no harm befall our daughter.
So as of this moment, we are still here at KKH Ward 41 Room 1. Dana’s high fever has been brought under control after 1 dose of IVIG transfusion but her rashes remain and she’s started having diarrohea today. If you are reading this, please say a prayer for our beloved Princess, that she can be fully healed of Kawasaki disease and have her birthday wish granted to “go home” soon.