Sunday, November 25, 2012

When it rains, it pours...

I'm so sorry for my lack of posts this past month! I hope everyone had a wonderful thanksgiving filled with delicious food, friends and family!

I haven't had a chance to update many of you (especially on the details), but our family had unfortunately spent the last month in the hospital again - first for little Grace, then for poor Aaron. After each hospital stay, we always think that this will be the end of it all- that we won't ever have to go back again, Grace will be happy and healthy, and we can all get on with our lives. We've learned never to assume anymore, especially after this hospitalization. But there is much to be grateful for, and much to hope for.

The late afternoon of October 22nd, I was in the middle of dictations after clinic. I got an urgent call from Aaron saying that Grace had started vomiting in the late afternoon and is now having a fever. She seemed perfectly fine and happy just hours ago. Now suddenly, it became very difficult to keep her awake. When she did wake up, she would vomit. A few days prior to that, one of her sutures behind her ear from her previous shunt surgery had started draining some fluid. Even though it was re-sutured and glued tightly back together in the emergency room, I feared that it probably had gotten infected. She was having symptoms of increased intracranial pressure and signs of infection from her brain. I dropped everything that I was doing and rushed back home with tears blinding the road in front of me, praying that we would be able to get her to the hospital in time.

Sepsis set in real fast. We got her as quickly as possible to the emergency room. By then she was extremely lethargic. She had vomited so much that her skin wrinkled with dehydration. Despite multiple pokes, her veins were so collapsed from sepsis and dehydration that the emergency room staff were not able to get access. Central line attempts also failed. Her oxygen and blood pressure were starting to drop. I knew that if we didn't get access to her vessels soon, she may go into septic shock and we could potentially lose her... again. The last resort option was obtaining access through her bone marrow, which involved drilling a hole into her leg. When I saw the drill, I almost fainted. Aaron, who is usually pretty brave about these things, couldn't watch either. We had to step out of the room and prayed hard she wouldn't suffer too much. We were so grateful for the emergency room physicians, who were so level headed and acted quickly. All this, which seemed like hours to us, happened over the course of 15 minutes. She was able to get IV fluids and antibiotics were started almost immediately. If she had gotten to the ER any later, I'm not sure if she would've made it. I struggled hard not to be a doctor at this time and just be a mom to Grace. I had to let go, and trust that the ER physicians will handle the situation.

The bacteria that was isolated from her brain fluid was ESBL Klebsiella pneumoniae- fancy way of saying that this organism was resistant to most standard antibacterials that are normally effective against it. It had gotten into her brain, infected her shunt, and probably caused some meningitis. She was taken to the operating room early the next morning to remove the shunt, because no matter how much antibiotics she got, if an infected indwelling object is not removed, the infection will never clear. That was her 5th brain surgery. Seeing her after the surgery was heartbreaking. She was not a 6 month old little baby anymore. She was now an 11 month old almost toddler who could experience fear, remember pain, and understand that she is in a foreign place with people who are seemingly trying to hurt her. It was so difficult to calm her sometimes because I couldn't make her understand. I wish I could've spoken her language and bring her peace and comfort, but she was just so afraid. Everything scared her. She didn't trust anyone. She stopped eating and refused to drink her milk because she had vomited so much that everything made her gag.

Fortunately, over the next few days, antibiotics were adjusted to treat her infection, and her fevers resolved within a week. Her shunt had been taken out, but a temporary drain was put into her brain to help removed the access fluid into a bag. All this had to be kept in place for at least 14 days for the infection to completely clear. At that time, we were going to then decide to see if she needed another operation to replace her shunt. 

We spent the next 3 weeks in the ICU. Our days were filled with frustrating attempts to get her to eat and making sure she was getting enough nutrition. She wasn't. She was irritable, uncomfortable and extremely scared. Our sleepless nights were fragmented with trying to help her get to sleep. She would wake up every few hours because of the discomfort from her meningitis, or loud noises, or vital checks, etc. No matter what we tried, she just couldn't get comfortable, and she wouldn't eat. We saw her day by day start to waste away and get skinnier, and eventually lost 20% of her body weight. I was filled with helplessness again, a feeling that is just so awful- to see your only daughter who had already gone through so much, to have to go through more suffering and basically withering away in front of our eyes. 

The only thing we could do was pray. "Cast thy burden upon the LORD, and he shall sustain thee: he shall never suffer the righteous to be moved." Psalm 55:22 
All our friends and family from across the nation, our prayer warriors, supporters, church families and body of Christ- everyone who have been part of Grace's journey from the very beginning, again came together to pray. Baby Grace was in the prayer of faithful friends who have never met her, small groups /fellowships who have only heard of her, children of friends who never forgot to remind their parents to pray during dinner time and bedtime. She is truly the luckiest baby in the world to be loved and cared for by so many. 
We prayed hard that God would bring her comfort and healing, that she would get enough nutrition, and that He will continue to protect her and save her. We prayed hard for a MIRACLE- that her little brain will re-learn how to absorb fluid, so that she will not need another shunt. He is the only one that knows her more intimately than any physician and surgeon. He knows her by every cell in her body and is the only one who could heal her from that aspect. 

She gradually improved over the next few weeks. Her drain was clamped for a few days to see how she would do without it. She seemed to do fine, so it was pulled out. Unfortunately, after this happened, she started to deteriorate neurologically. It was determined at that time, that her brain was still not capable of re-absorbing CSF and she still needed a shunt. We were initially scared and disappointed, but we understood that at this point, another surgery needed to be done or else she wouldn't survive.
Shunts don't last forever. They break. They get infected. They often malfunction. As long as she has it, I felt like we will always worry something might happen. She was declared to be "shunt dependent", and underwent her 6th surgery on November 7th.

Although I felt like this hospitalization was the most difficult for all of us, everything that happened before this had prepared us mentally and spiritually for this time. There were definitely many times where I felt so helpless and terrified out of my skin. I would quietly escape to the bathroom, fall to my knees, sobbing in fear and crying out to God for help. Despite all this, our faith has never been shaken. I know without a doubt, that Grace and our family are going through this for a very specific purpose. We've had a lot visitors come by to see Grace. Among them were friends from Chicago (Dave and Sarah Ly), and several close friends from Rochester Chinese Church. One day, a pastor's wife who is closely involved with RCC came with our friend Shi-Gao. She visited with us for a bit, and the words that she spoke truly touched my heart. She looked at Grace, and said with such conviction: "God has something extremely special planned for this little girl in the future. We don't know what, but she's going to be incredible. Just wait and see." My  heart was suddenly filled with warmth and joy. I suddenly felt just so much excitement. Aaron and I looked at each other and we were just overcome with a sense of happiness, that we were chosen to be the parents to this wonderful, beautiful little girl, who is going to be incredible someday in ways that we cannot see. She has already been such a blessing and such a great testimony.

Grace was able to come home 2 weeks ago. She's doing great! She's eating again, gaining her weight back and is back to her normal self. Each day she does something new that surprises us. She's even starting to say some words. We are weaning her anti-epileptics and she is almost done with her Keppra. Her sutures are healing well, and she is as happy as can be. She's turning 1 years old on Monday. We were able to celebrate a little bit early with her yesterday :)

 Grace with Grandma

We prayed for a miracle. She has been a miracle from the very beginning. Given all that she has gone through, 6 brain surgeries, septic shock, seizures... I look at her now, and she is just doing so well. She has not had ANY seizures. Although the shunt did have to go back in, miracles happen in His time and in His way. We just don't know how and when, but trust that He hears our prayers and will never forsake us. The shunt has also been a reminder to us that just like how Grace depends on it, it is like a reflection of our faith in Christ. We depend on it for our survival. There will be times where our faith can break, malfunction and get infected, but it can be restored and cleansed. Just like how the shunt has given Grace a chance at life, our spiritual shunt has given us a chance at eternal life. 

We will never know what will happen in the future for us, but we are ready and prepared to take any steps together with Grace to support her. It brings a smile to my face that many of you reading this today will also continue to walk with us throughout her journey. Thank you, from the bottom of my heart.

When it rains, it often pours, but the sun will always continue to shine. Our lives are always sunny with a side of something wonderful.