Ever since we were admitted into the hospital on Monday ( 13 May 2019), I did not manage to destress. My usual method of de-stressing would be meditating and praying. If I have time I would include Qigong practices as well.
It can be quite a challenge because Patrick would try to attract my attention. At one time while I was meditating, he would climb onto my body and making squealing sounds. The more I ignored him, the more he wants my attention.
During night time, Patrick had trouble sleeping. It was due to the growing itchiness of his body. There may be times he would be deeply asleep. Suddenly he would wake up with cries of distress while scratching his body. Sometimes his scratches were so hard that it drew blood on his body.
While we were in the hospital, he has been waking up more at night. On 15 May 2019, I finally slept around 4 plus am. I woke up around 6.30am because Patrick's milk pump alarm was blaring to signal the milk storage was finishing.
After I finished topping up the milk storage bag, Dr James came into the room.
"I would like to take his blood."
I was puzzled. I assumed the blood was fully taken on Tuesday morning?
"It is to check for antibodies in Patrick."
The name of the test is known as titer blood test. It was to check the presence and amount of antibodies in the blood. If Patrick have a strong immune system, having a different blood type liver as a replacement would be a big issue. I have heard a 9 years old patient was rejected by Shanghai hospital to do liver transplant. Her immune system has matured, and this would led higher chances of the new liver rejection.
Looking at Patrick's sleeping face, I felt bad he has to wake up to pain again. Once more, I carried him in my arms to the procedure room.
I laid down his sleeping body onto the bed while Dr James checked the heels. He decided on the heel once I informed him that both his hands were pricked the day before.
Then Dr James started to prick his heel. Immediately Patrick woke up in pain, crying.
I quickly leaned over him, exposed my breast for him to breastfeed.
He was in between moaning and cries. Confusion and fears rising in him. I kept coaxing him to my nipple.
Then I sang. I sang my songs which I composed a few years ago.
my song. Also in 2017
sing my song to Jane Goodall. I admire her humanitarian
efforts. She was in Malaysia giving talks on saving Earth.
This video was taken in 2016.
When I finished singing the first few minutes, I asked Dr James how long would this procedure be.
"10 to 15 minutes."
I am not surprised. He need to pinch his open wound at his heel into the tube. It can be a long process of small droplets to fill up the small vials.
I kept thinking of songs to sing. I sang nursery rhymes. When I finished, I continued with other songs. I kept on singing until the procedure ended.
Patrick was becoming calmer by listening to me while sucking my nipple for comfort.
Finally the procedure finished. Dr James told me in a gentle voice that I did a good job.
I admitted to him I felt stressed having to think of songs to sing to Patrick.
He repeated his compliments.
Phew. That was done. By almost 8am, another doctor came into the room to check on Patrick's progress. How was his sleeping habits? Did he have a restful sleep? After I finished describing, I inquired was the echo test being arranged yet.
He went out of the room. He returned with an answer - "No."
I was growing impatient.
"Please get it arrange."
Almost an hour later, he returned with this answer.
"Your husband's appointment is on June 3. Patrick's on july 3."
Did I hear him wrongly? July 3rd??
He confirmed the system stated July 3rd.
That was when I lost my composure. July 3rd is too long. Why cannot it be earlier? The doctor's initial smiling face became uncomfortable at my attitude. He shared he could not do anything about it. He informed me one group of doctors shall come into my room later. He suggested to me to ask them about it.
When that team came into the room, I asked why the echo appointment on July 3rd.
Answer was - Patrick's condition was not serious yet. There are other babies waiting in a queue. The earliest would be July 3rd. There was this tone that I am to accept it whether I like it or not. It is in their hands.
One major reason I am growing anxious was due to the bilirubin results. I got to know his bilirubin levels have increase tremendously again. Last month it was at 276. Last week it was at 354. This week at 404. His behaviour corresponded with this increase. His level of itchiness especially at night. His sudden unusual behaviour of holding me tightly, refusing to let me go. It was very unusual behaviour of his.
The signs are there. His condition starting to go downhill even more. July 3rd echo appointment? If his bilirubin levels can increase so fast in a week, I dare not speculate what would be the results by July 3rd.
I insisted on having the appointment earlier. I told the doctors point blank, whoever made the July 3rd appointment, if anything happened to Patrick during the wait, if..the worse case scenario if Patrick dies... I would personally meet that person and hold him or her responsible. My body language accompanied with eyes that looked they would popped out from their sockets anytime, hard rock face with rapid breathing.
My tone of voice was growing louder and aggressive. Because the doctors was saying he is not serious yet. I have joined the support group where a few babies/toddlers have small symptoms at first which progressively grew worse in weeks. And when the liver failed, it can be very fast. Then a life and death situation will happen. Sometimes the baby or toddler may suffer in pain before the transplant can happen. I told myself I want to prevent pain from happening or to limit that experience as much as possible before the transplant.
Then because they could not able to make me accept the appointment, they arrange a cardio team to visit us. Two doctors came in and discussed with me. They checked his heart with a stethoscope. They listened to my concerns. They checked on their system and said it stated July 11. One doctor suddenly remarked to other doctors that no wonder I reacted because the appointment in July. The appointment in July was made with the assumption it was not a serious case. The one who made the appointment did not realise it was for a liver transplant patient. That it was a misunderstanding.
What?! Which is which now?? I am getting confused and unhappy.
When I felt no one was listening to me and cared of my concerns...I felt if they still insisted on July 3 or 11 as the echo appointment, my son's wellbeing is at stake here.
I broke down and cried. I insisted July 3rd too far away. I explained I want to capture that window of time where he can go to Shanghai hospital with minimal complications. I expressed my fears of losing him. Don't tell me he has time when time is so important. I told them point blank that I am 47 years old. He may be my only chance of having a child. Don't tell me I can have another one.
I was crying so hard at the thought they would delay the echo appointment.
|This represented me - my broken heart at the thought |
of the possibility of losing Patrick.
Would they be taking responsibility if anything happens to Patrick during the waiting? I don't want to hear, oops sorry. These things happened. Patrick is not a statistic on their medical reports!
I don't want to hear words such as you just accept his death when the unnecessary delay was not due to me. I have read in the support group sharing from heartbroken parents whose doctors mentioned that it was too late. Just be ready to accept the child's death.
One doctor took a tissue and passed it to me while I was sobbing loudly. During this commotion, Patrick was sleeping away.
The doctor told me that they will try to obtain the echo appointment either in the afternoon (15 May 2019) or the next day.
I had seen how time showed the worse deterioration of the baby or toddler when their liver start to fail. It can be massive bleeding in stools or vomit. Kidney failure. Fluids in the brain. It can be scary how much suffering the baby or toddler would go through when the liver failure became worse. Sometimes it can be very fast until weeks to live. The pain, oh the pain I seen on their young faces through the support group photos... I don't hope to see it on Patrick's face. I had personally seen a baby whose condition was discovered too late and paid the price. How lifeless were the baby's eyes. How his voice was so weak, and made sounds of pain to his mother.
Almost two hours later, the doctor returned to us. To get Patrick ready for the echo. The appointment was set in the afternoon that day.
Before the echo appointment, there was another blood extraction exercise to be done on Patrick. The doctor explained they did not get enough blood to do hepatitis testing on Tuesday morning. I was getting frustrated. However if it needed to be done, it has to be done.
Once more, I brought a fearful Patrick to the procedure room once more. One nurse instructed me and my husband to stay outside. I put my foot down and said no. With a determined look, I said, "No. I am staying with Patrick." I had made a promise to Patrick I will stay with him through all scary moments.
The doctor looked for one hand to prick. He was crying throughout. I tried to sing to him again. While collecting the blood, the female doctor said, "you have a good voice."
I was more concerned of making Patrick feel less scared than being the recipient of her compliments. Then the doctor need to set an IV line for some test later. Another painful experience. After it was done, Patrick stopped crying. He glanced up with tears in his eyes and stared at the nearby nurses.
He raised his hand to them, rotating his wrists and fingers from right to left and vice versa. The nurses were confused. I explained to them - Patrick is asking whether has the procedure ended. The nurses laughed. They looked at Patrick and do the same gesture. They assured him it has ended. Patrick made the same gesture to confirm. The nurses confirmed with him by body language.
16 May 2019
On the morning of 16th May 2019, the team of doctors came once more. To inform part of the blood test results. One doctor told us if everything go accordingly, with no complications with the transplant Patrick would be fine.
She was trying to calm me. I was growing restless. I had not been able to do my usual de-stressing method of meditation and prayers during the hospital stay. With lacking in sleep and rest, my emotions were more raw and reactive.
I insisted I wanted to know not only the best but the worst-case scenario.
The doctor have an exasperated look. She must have found me to be difficult especially for questioning the doctors time and again.
With a stern face, she said if things goes wrong, if the brain is affected to the extent he becomes confused, we can forget about transplant because it is too late. The more appropriate treatment should be focused on palliative care. At the same time, he must not be too sickly to the extent that it was too late to have the transplant. I heard of one mother who shared in the support group how a doctor advised her that nothing can be done further. To wait for the baby's death. The baby did eventually die within weeks.
I paused at the doctor's words on palliative care if the brain was affected. I tell myself, no matter what, I will still love him. I will still take care of him. If the worst happen. I don't feel as fearful because I was willing to face the truth.
We also have been prepared that if the spleen is too big and affect the liver transplant, the surgeons may either cut part of it or remove entirely. Both myself and my husband were shocked to hear that. Can a person live on without a spleen? The doctor's answer is yes. However the immune system would be weaker without the spleen. Patrick's spleen has been slowly enlarging due to being affected by the liver deterioration. Would the size of the spleen be too big until affect the liver transplant surgery?
Sometimes in times of stress and emotional intensity, I tried to pray for peace. For answers. For clarity. I especially did that on 15 May 2019 after the emotional outburst. Suddenly I feel compelled to check on my phone. I looked through my phone I had taken on 15 May 2019.
There were times I took a series of Patrick's photos without stopping. I did it especially when he liked to sway or move his body constantly.
One photo caught my attention as follows:-
|A bright light around Patrick's face.|
I wondered was it the camera flash, but I switched it off. I wondered was it the sun rays. Yet if it was the other series of photos should have that as well. I stood at the same position, at the same angle taking a series of shots of Patrick. I felt compelled to look at my mobile photos after prayers. So was this photo a sign?
Whatever reason it may be, I found the photo intriguing.
P/S - I did feel bad afterwards for the way I reacted towards the doctors. They did try their best to accommodate me, to try to pacify my fears. I could not help be emotional at the thought of the possibility I may lose Patrick. I grieved with other mothers in the support group when they lost their babies and toddlers to the illness. It is the most painful experience for any parent to go through. I hope not to go through it. I hope.....