What an emotional one month of my life!!
It began when we took Zara to Liberty Hospital ER on Sunday Oct 28th. She was sick and had a light fever couple days before and on Friday I took her to her doctor, got an X Ray and told that she would be fine. She has a little bit of bronchitis in her lungs.
But since Saturday she was getting weaker and the worst was on Sunday, when she hardly can breath and her face turned out blue. I called Phillip in panic to come home and when he saw her face, he said "We will go to ER". I tried to keep her awake all the whole time, I knew something was really wrong with her and if I let her fell a sleep, she would slipped away…..
The whole time we were at ER, I only stayed away from the room. I saw the doctors, nurses tried so hard to save her life. I was watching my baby, my soul…lying there almost breathless…Oh my God, what a nightmare! What a horror……..The Liberty ER team called Children Mercy hospital to send an ambulance since CMH is the best hospital for children. The ambulance came and the people took over Zara. They even mentioned if necessary we had to take the ride with helicopter. Thanks god, we didn’t have to.They wore mask, and put her in breathing mask since she couldn’t breath by herself. At that time, I realized that everything in God’s hand….I wanted to scream but only my eyes got wet…One nurse cried with me, others shared their sympathy as the CMH team started pushing Zara to the ambulance. I was on the ride with them, Phillip and Kaela followed with other car. I sat in the front, frozen and scared. I took a peek at the back and saw the chart….Heart beating rate at 230/minute…..I whispered God’s name over and over…."Allah……Please save my baby" Now, I understand why we always give our way to ambulance. There is life is in danger in those car. IT is not a joke!!
Arrived at the hospital, they rushed her to Pediatric Intensive Care Unit (PICU) and then I had to wait outside. I sat there by my self, crying, hopeless, scared, my mind went blank until Phillip and Kaela arrived. It was a long waiting until one doctor came up and sat with us. Asked all the detail, what went wrong and explained what they did to Zara. She had infection, very sick, and cannot breath by her own. They drawn blood sample to find out what was happening to her body…….Could be meningitis…..If it was true, it could attacked her brain and caused brain damaged……
I was sitting there tried to tell my self that wasn’t happening. It was a nightmare and I would , up soon, but it wasn’t.
At that night, as much as I wanted to stay….I had to go home because I was sick too. I hadn’t got sleep many nights before because Zara was cranky and sick. Jennifer came and stayed with us for a while. We went home because we couldn’t do anything. We offered our blood but the doctor said that they would took another plasma from donor. Zara’s blood plasma was so low, her blood pressure dropped drastically, the bacteria attacked her immune system badly.
The next morning, I woke up with painful sore throat. I had fever but we rushed to the hospital. Phillip went inside to check Zara, but I stayed outside because I don’t want my sickness harmed her.
It was my 36th birthday. I was sitting outside with tears of hopeless not knowing what would happen to my baby…It was horrible…………..! Ghita and Jojo came and stayed with me for a while…..then Sidiq, then Mom, Nicolette, Julia…I still stayed outside, I didn’t dare to go inside and faced the reality. Ghita took me to Cerner Clinic, to have the doctor checked me. He gave me antibiotic, then we went back to the hospital. I finally felt strong enough to see Zara. When I went inside, they required everyone including the doctors and nurses to wear a mask and gown and gloves…..and there was my baby…lying there, but I hardly recognized her because her body was swelling. She was so puffy that her eyes bulged so much. She suffered from Toxic Shock Syndrome from Strap A bacteria infection. It was very fatal sickness. I was so afraid to touch her….Her whole body developed rash, her eyes closed, …..The sound of breathing machine, tube down into her nose and mouth, she had an IV attached on her head with seven kind of medicines, catheter, big tube on her thigh, on her chest to drain mucus from her both lungs…..It was a mess…..Then it started my long journey up to now.
The whole time she was in ICU, I stayed at ROnald Mc Donald house runs by volunteers. This place located at the same floor, and there is room available to sleep and it is like a hotel room, volunteers provide dinner every night sometimes home made food or restaurant food, and everyone is welcome to eat there. It has kitchen full of foods, sitting room, special room for family in grief, and its free. So often, doctors are looking for patient’s family to break news about surgery results in that room….There is ROnald Mc Donald house across the hospital, just like hotel for family who lives out of town with free shuttle bus between hospital and the house. All this happens from generous people who spare their time, food, money, to make this house runs. Usually at night, the nurse call the house letting their know that I want to stay at the hospital. They house staff then looks for room priority, and because Zara’s case was serious, I always get the room. I stayed at Zara’s room maybe until 1 or 2 in the morning then went to sleep at Ronald Mc Donald and woke up by 6. I could sleep in ICU room but the chair quite uncomfortable. Aside of free meal at Ronald Mc Donald, I also got meal voucher three times a day $4 each to have meal from the cafeteria since I am breast feeding mom. Everything in cafeteria are cheap. This hospital is surprisingly is a non profit organization. It is so cute because everything is for children so there are playing room everywhere, every windows or wall covers with painting, ceiling has this beautiftul decoration, bright yellow, blue or red colors, it is just so neat.
My biggest respect is about the staff work ethic. The nurse who was responsible to Zara acting like a doctor. They checked her every minutes, give medicine routinely, always answer my question even the silliest one, wrote down every single thing what they did to her, I hardly saw they sit down do nothing except when they working on their paper. When we away from the hospital, we can call them and ask about our baby. They really caring for their patient. They call their patient "My Baby" and address parents as Mom and Dad". Many times, they take their little patients who doesn’t have the parents in the room to play with them in their office or holding the little ones on their break times. Totally 100% care!!! I asked if Zara can have something to play, they brought back bunch of toys. I can even go to playing room and take as amny toys as I want for Zara.
The doctors are open to have discussion with the family, they are so laid back. They came in a big group every morning. There is one attending doctor (main doctor) and bunch of residents (doctor who still in learning process). They inviting us to come up with question or concern in the group discussion.They always let you in the room for most of procedures, except on code blue situation when Zara breathless when they removed her breathing tube. The doctors never fail to asnwer my question and they are really polite.
One thing that set me back about the hospital operation is that how much waste they created every minutes. All the equipment except the big one and permanent like a monitor are being thrown. If the patient has contagious sickness or very weak, the staff or visitors have to wear mask, gown and plastic gloves into the room even when they stay for less than 1 minute (like room service staff)! One day, Zara had more than 8 visitors and including me, friends, doctors, cleaners, nurses…..maybe there were 100 gowns, 200 plastic gloves and mask in the trash bin. Not including small equipment like scissor for example. If they need to cut tube that will attach direct into Zara body like feeding tube, they would use fresh metal scissor from plastic container. After they used it, that scissor either thrown away in the room or we can bring it home to use. But not for nurse to use again and when they need to cut another tube they will get the fresh scissor again…One day, they came up with feeding bottle and 4 kinds of nipples for me to choose what is fit for Zara. I choosed one and the rest went to trash. Whaaaaattt……???? Anything from the room can not be taken outside the room for other patients to use.
After a week in ICU, they moved her to 6 th floor. She didn’t do well so the second day, she went back to ICU. Stay there for a while then went to 4th floor. The hospital care here is awesome!!!! Doctors are available every time we need them. Nurse kept on checking for temperature, my needs or her needs. Everything is available in the room. Fridge, TV, bathroom, sleeping bed, Internet connection and computer, DVD with selection of children movies, Cd player, room service since I am breast feeding and I could order when and what ever I want, call button if I need the nurse, breast pump machine, there is kitchen full of milks, baby foods, milk bottles and nipples, sodas, cookies, snacks for the patient or the mamas……Woooowwww We can go there every time! No limitation! Amazingly, people never take more than they need. Never seen the hospital staff taken any food or drinks from the kitchen since it is only for the patient.I wonder if this ever happens in Indonesia. Volunteers are everywhere. One day, an old lady came and knocked the door. She told me that if I need to run errands, she will stay in the room to take care of Zara…What a bless!! People from chaplain are available if you need support and need someone to pray together. Every morning in waiting room outside each floor, there are juices and pastry for people or family of the patient not including free tea and coffee machine. In every waiting room , there is always TV.
Rich or poor, they treated you the same. No first class or second class room or economy crap room, who divide patients according their economy status like in Indonesia…….Thanks God, this is America. I don’t need to worry whether we can afford to pay this kind of treatment since Phillip has a great insurance with his work. We got the first bill, it was already more than US$200.000 for the two weeks only (!!!) she was in ICU. We could pay off our house mortgage with that money haaaaa. Eewww……i can’t imagine how much bill for the whole month plus expensive medicines. For example, Zara will have shoot twice a day for the next three month for her blood clot. One shoot cost $100. Twice a day for three months?? And when the parents are too poor to afford the payment or doesn’t have insurance, the government will take over the payment.One thing I really adore about this country is that saving life come first before money, no matter how poor you are, your child’s life is more important than your ability to pay hospital bill. Bless America!!!.
Finally Zara went home. But we only stayed for couple days before she got worse again. I took her the CMH South just to check her condition and guess what…went back to CMH Main with ambulance on the same day. Doctors won’t take any risks with her health history. Her white blood count high, hemoglobin dropped. I went numb again.
Stayed there for couple days at 4th floor. Then she went home but she wasn’t doing well……So, they take her back to the hospital. What did I do wronggggggggg???????????????????????????????????????????? I miss her smile, I miss her noisy voice, I missed my quite day with her in the crib playing when I was cooking in the kitchen, I miss Kaela since I stayed in the hospital most of the time. I miss going out with four of us ……..I miss all of that…My normal life as a happy mother of two angels.
Zara is so skinny that the doctors are worry about her wealth on top of what is going on with her. The doctors are in a puzzle because they seemed can’t find what is her real illness. We talked the specialist from Infectious Disease, Nutritionist, Homeopathy, Occupational Therapy, you asked for the kind of the doctor, they will show up. Everyday, they draw blood from her. Poor thing, you can see horror in her eyes whenever the nurse came up with all the equipment. I don’t know how many times she got poked to insert IV or just to get the blood, on the head, feet, arm, even heel..You name it. Many X rays, 4 times spinal punctures (when they insert needle in her spine to get the fluid), get urine through catheter, 3 CT Scan on her head…….). I hate those procedures, I hate them. I could hear how hard Zara’s screaming whenever she went through that……I wish I can take her place……Sometimes I want to scream at the nurse…STOP HURTING MY BABY!!!!! SHE IS ONLY A BABY……..PLEASE……………But my mouth is closed, my eyes are teary, and there are many times I stood by her to comfort her, but many times I just went out the room because I just can’t take it anymore…..They doing that to help her after all.
We are here again and still. My baby still being poked with needles because the doctors are determined to find out what caused her so weak like this. She has her feeding tube since she is really need to gain weight. Her doctors team are digging more to find oput what is going on with her. THey will run some tests to check if she suffer from auto immune system disorder.
God, when I am going to wake up from this nightmare? Please wake me up, this journey is too long…….I know that she is belong to You, and here I am trying my best to watch her for You. I am trying to be strong, and I hope I only can become stronger for her and You.
I learned about giving and helping others. We can do so much to community if we open our eyes. Helping others not only invloved money, but it can be simple as donate your time or effort. I saw lots of volunteers become back bone of this hospital. Old people who mostly I saw around doing this honorable thing. I tried helping here and there a bit. If I saw playing room in a mess, I cleaned up. Sometimes when Zara was sleeping I went down and offer my help at ROnald Mc DOnald house to clean up too. Maybe, Insya Allah, when Zara is getting well and bigger I will sign up doing volunteer job in this hospital.
I learned a lot about friendship too. Many people I considered friends before, but now only a few whol will stay dearly in my heart. For those who sent me email, drop a call, came to the hospital, brought food, cards, birthday present for me and birthday cake, pray for Zara……Thank you. May Allah give you Hiss bless in return.
I learned about hope and faith too. I have seen many children and babies lying hopeless on their bed, sometimes crying all the time without parents beside them. I heard helicopters taking off or landing and keep bring sick or injured children from all over the place everynight. I cry for them, my heart goes with the parents and family who suffers too, I feel the pain but I also can feel that these babies and children are miracles sent by God to us. Their soul are pure and their innocent are so honest. They have those wondering eyes full of faith. Whether they are breathless, in pain, swelling, failing, or dying; some of them will bounce back to life and those are not….I know that they being loved by God and that what is matter after all.
