It was the beginning of a nightmare for both he and us. I wasn't with him when he was warded. But my husband said they have to wait for a very long time even with the paed's referral letter. After the doc has seen Jonas, they didn't want to ward him at first, treating his condition like just one of the normal cases of constipation. It was not until my husband raised his concern(raised his voice also) before they finally ward Jonas. My husband has requested for A ward during admission but was told that was not available at the moment and we would be informed when there's a vacant one. But when they reach the B1 ward(4 bedder), my husband walked around and noticed there were many vacant A class wards so he enquired. He was told that because tomorrow is a Monday, those rooms were reserved for the surgery patients. My husband accepted the explanation but reminded the nurses to please inform us ASAP when there's a vacant ward. The reason is because Jonas is feeling uncomfortable thus making a lot of noise and we are worried he'll disturb the other patients in the same ward.
An X-Ray of his intestines were taken when he was admitted and it showed the stools stuck there for god knows how many months. That's the reason why his stomach always seem so bloated and his appetite so poor. Jonas also had to have his blood tested and a needle was pricked into the vein of his tiny hand to draw the blood. The needle had to be left there throughout his stay in case they need to test his blood again and we had a hard time trying to distract him and to get him not to fiddle with it lest he injured himself. My heart ached when I saw him with the needle and looking so tired from the afternoon's treatment to clear his bowels.
Jonas fell asleep very quickly on the first night but we have a very hard time to get to sleep. We are allowed only one foldable bed. At the same time, we are worried Jonas may wake up in the middle of the night so decided that my husband will sleep first while I stay awake and I'll sleep when he wakes up to take over from me. But I was so tired I ended up sleeping on the chair with my head rested against the wall from 2.30-4.30am. I woke up with a stiff neck when another child was admitted into the room and they were making so much noise. My husband and Jonas also woke up to the commotion. My husband told me to rest on the bed while he takes care of Jonas. But it was so noisy Jonas could not sleep. My husband had to bring him outside to pat him to sleep. He had to do this a few times as every time not long after we put him back onto the bed, he'll be awaken by the people talking in the room or the baby crying. I had a hard time sleeping too, tossing and turning around for an hour before finally getting some rest when the visitors all went home at about 5.30-6am.
Woke up at 8plus to feed Jonas his breakfast. The day was another round of rectal washouts but this time they inject olive oil half an hour before the washout to help to soften the stools. Again, the morning washout was not successful. My mother and father in law came to take over around noon and we quickly went home to wash up and rest before rushing back after we finished with our errands. The washout only started to work on the 2nd day night session(it was done thrice a day). He managed to pass abit of motion on his own slightly after the washout. The dietician was also there to see him to check out his daily diet and suggest improvements we can make to it. After listening to my mother in law, she feels that Jonas may be taking too much fibers(in the form of vegetables in his porridge) but drinking too little fluids. So she advice us to cut down on the fibers and make sure he takes 300-500ml more fluids a day then now. We were also encouraged to give foods like yoghurt and apple or prune juice as they aid easy bowel movements.
Throughout the evening, we kept enquiring about the switching of wards as we both agree we won't be able to stay for another night in the B1 ward. By now all the beds in the ward were taken and there were many visitors coming to see the patient next to Jonas. It is difficult for all of us to rest properly. The nurses reassured that our request is being seen to and will be notified once there's an available room. We were finally switched to the A ward at about 8pm plus after very persistent enquiry from our side. It was really heaven and earth apart. There's a sofa bed which can sleep 2 and we have our personal toilet. All of us rest much better that night.
The doctor came to see him next morning and seeing that the washout is showing result, he decided to do it once more and monitor his progression. He also decided to follow up with oral lactulose to soften the stools and to give suppository to aid in the bowel movement. I was working on that day but my husband filled me in on his condition throughout the day. I was glad he continued to have bowel movements but so far all are assisted. I go to stay overnight at the hospital every night after work while my husband took leave from work to look after him. My mother in law also came over every day to help us look after him.
However, Jonas developed a fever of about 37.3 Degree Celsius at night. His temperature was quite high so the doctor decided to give him some medicine to control the fever. We were told if his fever did not subside, Jonas may need to have his blood tested again to rule out any infections. We were very worried but luckily his fever subsided after the medication. The nurses came in to take his temperature every 1-2hours throughout the night.
The doctor decided to discharge him the next day despite us raising our concerns as to whether he'll be able to have bowel movement unassisted when he goes home. His explanation is that he may not be able to do so at the moment so we have to help him and this could take months before Jonas gets regulated back to normal. He decided to administer Fleet(liquid medication that causes intestine to contract and relax) to clear any residual stools in Jonas intestine. This medication is very strong and after a short while of applying, Jonas passed out a lot of stools. In the afternoon, the usual suppository was given and again he managed to pass motion. The hospital was ready to discharge him at late noon but again we raised our concern to another doctor and he decided to keep Jonas for observation for one more day. So far, Jonas will pass whenever he's assisted but not by himself.
He did not pass motion on the last day but the doctor still decided to discharge him saying that for now he needs to get treatment at home and be monitored 1week later. There is no reason to keep him since he is able to pass motion during the treatment. We were told to feed him lactulose every morning. If he didn't have any bowel movement by the 2nd day, we'll need to apply the suppository to aid him at night. If he still didn't pass, we need to instil Fleet on the 3rd day. Jonas was discharged on a Thursday.
Our worries turn out to become a reality. On Friday and Saturday he did not have any bowel movement but as it was already quite late, we applied the suppository for him on Sunday morning. His stool was very hard and it caused an anal fissure again with rectal prolapse and this time the blood was just dripping from his wound. I quickly took a picture so that we can show the doctor exactly how serious his condition is. We decided to admit him back to KKH A&E again straightaway. So my husband called to make an appointment and also checked that the single bedded wards are available.
At the clinic, we get to see the doctor very quickly as my husband voiced out his frustrations regarding the previous stay. At first the doctor wanted to send us home again with some medications but we stood our grounds and requested to let him be warded and monitored. This time our admission was super fast and efficient plus we were given the A ward right away. The doctor decided to give him lactulose and suppository. No rectal washout this time round. They also prescribed a gel that's applied to his anal area to numb his nerves for a short period so that he don't feel so painful if he pass motion. But end up we also didn't use it as we were told the effect only last for 30 minutes.
He was discharged after 2 days this time as the doctor found nothing wrong. We were told it was just a process that Jonas had to go through and eventually will be regulated. But the process is a long one, taking from months even up to 1 year sometimes. The prescription given this time was stronger. We still give lactulose every morning but we will need to give him suppository every evening plus probiotics to make sure he passes motion daily. If he didn't pass by the third day, we'll have to administer Fleet. So far, I've only used Fleet once.
We could see that although he passes motion daily, he's reliant on the suppository. So after going for his 1st follow up and the nurse still ask us to continue with what we are doing, my husband decided to switch to TCM. He had been taking the TCM medication for almost 2 weeks and so far there's only once he didn't have a bowel movement for 3days. We shall see if it helps him and at the same time may be seeking a second opinion on his condition. We also made sure he drink more water and other fluids. I bought for him Manuka honey to mix into his water, organic fruit purée and yoghurt that he can take as an afternoon snack and also fruit juices that are ready packed so that there's variety to keep him interested to drink more. My mother in law also bought sweet potato to cook porridge for him as it is known to be effective to cure constipation. My colleague recommended giving a teaspoon of pure coconut oil a day which she had been doing for all her 3 kids. This is a traditional Chinese remedy. I already got her to help me buy from Malaysia but don't know if Jonas will drink as he is a rather picky eater. Hopefully this time we can truly end his suffering and get this issue that has long been bothering us off our minds soon. Keeping our fingers crossed.
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