Action Plan Before Hospitalisation

Based on the rapid loss of his weight, we decided that it was time to admit Patrick to the hospital for nasogastric tube procedure in the middle of June 2018.

It was not the first time he had that procedure.  I could not remember exactly which day that we admitted him to the hospital for the said procedure. It was sometime between the period of April - May 2018. He was hospitalised for a few days. 

I remembered he was not happy and cried on the day of admittance. I attempted to cheer him up on that day. However, he managed to pull it all out during Malaysia's Election Day on May 9, 2018. How could I remember that date well? It was because I remembered texting my husband that Patrick removed his tube. My husband was back in his hometown to cast his vote. I was taking a nap in the living hall while my son slept in his own chair. I suddenly woke up to his cries and discovered that the tube was no longer inside his nostril.

After the discussion with my husband, we decided against reinserting the nasogastric tube. What decided for us then was because he was vomiting up to five times on an average daily. Even during his few days stay at the hospital, he vomited as well. We assumed it would be a temporary side effect of the nasogastric tube although according to the doctor not all babies react in the same manner. My husband felt it was counter productive. Instead of helping him to gain weight, his vomiting spells may cause it to be otherwise and it is also traumatising for Patrick.

A few months later in the middle of June 2018, Patrick's rapid loss in weight had us reconsidering on nasogastric tube insertion.

Recalling the way he had reacted to his earlier hospital stay, I knew I must have an action plan. The doctor had suggested maybe a week or two in the hospital, depending on Patrick's reaction to the procedure.

On the day of admittance in the middle of June 2018, Patrick was crying almost the whole day. Whenever I manage to calm him down, in come someone to check his body temperature and blood pressure. Then another coming in to look at his stomach and so forth. 

If we were going to stay until a week or more, it can be traumatising for Patrick to be in constant fear.

I decided it was good to have an action plan

I remembered I wrote the action plan and stick that paper onto the wall to remind myself.

1 - To meditate and pray every day. ( Which I was not able to do on a daily basis during my one month stay. Even when I tried to meditate, I will fall asleep mid way as my physical body was calling me to rest in slumber. When I managed to meditate, oh how my exhaustion melted from my mind and body)

2  - To encourage Patrick to smile and laugh every day.

Making Patrick happy, my number one priority!

3 - To encourage Patrick on his standing exercises. ( He would usually gripped his hands onto the bars of the baby cot, with smiles of achievement.)

4 - I will sing to him daily of uplifting and positive songs that made him feel good of himself. It was in the hospital when I first started trying to empower Patrick by singing, "You have the power! You have the power, Patrick! Baby power!"  This was based upon the song, 'The Power' by Snap!

He always seemed to listen to me closely whenever I sang. I would encourage him with that verse when he held onto the bars of the baby cot. How his eyes sparkle, with his steady legs and firm arms onto the bars. He would try to stand as long as he can for up to five minutes or more continously. And when his legs became tired, he sits down. In less than half a minute, he will pull himself up again onto the bar to stand once more.

5 - Patrick to play with his balloon, that was given by  one mother. Usually he would just tapped it with different degrees of force.

6 - I would read books to him. He especially like books that are interactive as he likes to participate in the story telling. My mother bought books that made sounds. By pressing a button on that book, it would either make an animal sound or played music. Whenever I finished one page, I would urge Patrick to "press, Patrick. Press the button." He would press it while looking at me with a beaming smile. 

Interactive musical or animal sounds book

7 - I would assure Patrick he is loved, supported and encouraged. 

We always tell him he is loved, supported and not to give up when
he face challenges such as trying to stand up and lean against the sofa.

8 - I would be with him in all the procedures that he needed to go through. In fact, verbally I had promised him I will do it. I truly had to fight to keep my word. During my one month hospital stay with Patrick, a nurse was ordering me to get out from the Room of Pain, where major and minor medical procedures were done on babies and young children. It was time for them to extract his blood. In the end, the nurse gave in when I insisted that I was staying with my son. Later the nurse explained that they had a bad experience when one mother fainted during extraction of blood from her baby. They had to attend to both the mother and baby. 

I did notice mothers were waiting outside the room, with worried looks hearing their babies cried out in fear inside the room. I remembered one mother shared with me that her baby needed to be inserted with the nasogastric tube. 

She was very worried and wanted to know about the procedure. I shared with her that it was not a pleasant experience. Imagine nurses holding you down while the doctor or the attending nurse pushed an alien object inside your nostril until it reached your stomach? I may not have the experience. However, I can tell that it was not pleasant.

The nurses informed this mother to wait outside while they do the procedure on her baby later. I told her that I refused to do so because I wanted to assure Patrick that I was nearby. That I have promised him I would be with him no matter what in the hospital. I told her that it was her choice on what she wanted to do later when it was time for nasogastric tube to be inserted on her daughter.

I noticed a flicker of emotions in her eyes. 

It was only later when I recognised what that flicker of emotions meant. I was bringing Patrick out in a stroller when I bumped into this mother, holding her baby. The nurse gestured her to come into the Room of Pain.

As I walked pass this room, our motherly eyes met; an exchange of understanding that we mothers will do all we can for our babies. Even though we needed to be in situations that would be uncomfortable for us. We will raise our strength to be strong for our babies. We shall lift  up our babies to be strong, positive and more.

We will guide you to be happier, to be strong and be a non-quitter, Patrick!