I’m going to attempt to put everything that happened on the 12th April 2010 into writing for posterity’s sake (not that I am likely to ever forget) and because I’m sure it will make me feel a bit better!
It has been almost 2 months since our lives were turned upside down!
It started with Nathanial vomiting at about midday a couple of times. As one knows after vomiting it is important to re-hydrate. So he drank plenty of water. At about 4pm he started having diarrhea, still taking himself to the toilet. It stopped after awhile, and he decided that he needed a nap. So I lay him down in the living room where I was in order to be able to keep an eye on him, he slept for a good hour and in between I woke him up encouraging him all the while to drink sips of water. He then woke up and requested to use the toilet again, so I helped him to the toilet. Still diarrhea. I brought him back to the living room and he promptly fell asleep again. I decided to put pull-ups on him just in case! Shortly after that he lost control and in the space of 15mins changed him 3 times. At this point I sat him up and helped him drink some water. It was then that he went all floppy and stopped responding. I called his name, clapped my hands in front of his face but there was no reaction. I called 999 immediately. The operator asked me lots of questions: “Is he breathing?”
“Has he got a pulse?”
The whole time I was urging Nathanial to talk to me, to look at me, to give me a sign that he was still aware. But nothing.
The rapid response unit came in 4 minutes (approx), at this point I presumed that it was the ambulance, but wondered why there was only one paramedic and not two. He quickly proceeded to check Nathanial over. Asking me lots of questions.
I continually pestered the paramedic, asking him what was wrong with Nathanial, why he wasn’t responding.
He replied quite frankly, “I don’t know, love.”
I asked him “Aren’t you the ambulance?!”
“No love, I’m the rapid response unit, the ambulance is on its way!”
My heart sank. To me it looked like nothing was happening and that he would get worse the longer we waited.
15 – 20 minutes later the ambulance came, and the rapid response unit guy said something like, we have to go now, he’s critical.
So I was ushered into the front of the ambulance in the passenger side and two paramedics got in the back with Nathanial. The ambulance went slowly at first as they tried to stabilise Nathanial and intubate him (I think) because he had stopped breathing! Then one of the paramedics shouted something to do with speeding up because he’s critical. I was sat in the front, looking back not wanting to take my eyes of my son. The paramedics were busy working on him and it just didn’t look good at all. I rang my friend whilst in the ambulance and she offered to meet us at the hospital. It was a long and agonising drive to A&E. Each time the ambulance driver honked his horn at cars to move out the way, was like a punch in the stomach – I pleaded with God, I prayed that the traffic would part like the Red Sea, I silently urged the driver to go faster, I wished we could just be there.
Once at A&E I jumped out the ambulance and ran round to be with my son. I didn’t really remember what happened after that I just remember seeing loads of people around Nathanial’s bed, attaching him to various machines. I remember thinking how small and fragile he looked lying there in that huge bed. Drs and nurses surrounded him, so many people talking. They ushered me to a chair, to take a sit. One nurse introduced herself to me, and said if I had any questions to ask her.
“What’s going on? What’s wrong with him?” I demanded, not really expecting an answer.
At one point someone said to me that Nathanial was critical and they were trying to get his heart working!
“His hearts not working?!” I shouted in utter disbelief.
It dawned on me at this point that I may experience the horror of losing my only child! That I may never be able to hold him again, to kiss his chubby little cheeks again. And then I sobbed. I sobbed and I sobbed. I had a sort of flashback of my life with Nathanial and didn’t want to experience the future without him. I cried out to God. I even found myself bargaining with God! “If you make him better, I’ll never get cross with him again!” (stupid thing to think or say I know, but at that point I was so desperate and not thinking straight!)
We were all asked to move away from the vicinity of Nathanial’s bed as the Dr’s did some x-rays. Quite frankly I was pleased to be able to stand up and pace!
I think it was at that point that my friend came. Oh wow, I was so glad to have someone with me. I was in such a state of shock, so confused, so angry (at who I don’t know!), so distraught that I wasn’t able to take much in of what the Dr’s were saying.
The Dr’s then informed us that Nathanial had a perforated bowel, from what they could see on the x-rays and that they were going to take him up to theatre to fix it. All the poison from his bowels was infecting the rest of his organs causing his body to shut down, that was their diagnosis at the time. They asked me to sign a form giving consent to a laparoscopy and any further operation once they had diagnosed the problem. I can’t explain to you how it felt to sign that form. The Dr going through all of this with me said that he would certainly die without this procedure, and there is a high risk of him dying during the procedure but they had to try. Never thought I would hear those words in all my life!
We were escorted up to a private room and the pediatric surgeon and anesthetist came to talk to me. The pediatric surgeon said that in all the 19 years of him being a Dr he had never seen a child this sick before. He told me to not expect Nathanial to survive either procedures and if he did survive it would be touch and go after that! He even said that he wasn’t a believer, but all we could do right now was to pray. It was an agonising two and half hour wait but the surgeon came back and told us that everything was OK when they opened Nathanial up and they couldn’t find a problem. He was still however in a critical condition. They told me that they were just finishing off in surgery and they would take him up to CICU. I went home that night, a decision which I still regret to this day, and obviously had very little sleep that night. I called CICU as much as I could to get an update on Nathanial. I feel so guilty that I left him that night all on his own, if his condition had got any worse I would never have been able to forgive myself for leaving him all on his own. The nurses reassured me that going home was the best idea, get some sleep and freshen up ready for the next day and the next weeks ahead.
Nathanial in CICU.
On 13th April this is what my facebook status read: Thankyou all for your prayers, encouragement and support. Nathanial is still in a critical condition, not breathing entirely on his own and his heart not functioning properly. However considering he was on the verge of death yesterday and was unlikey to survive, today is an amazing answer to all your prayers.
I woke up early on Tuesday morning having had about 1 hrs sleep. First thing I did was call the CICU to check up on Nathanial. They said that his condition was the same. I got ready to hospital. I tried to eat but could not stomach anything, even a yoghurt.
My Uncle, Auntie and cousin came to be with us that day. I couldn’t have coped without them. I wasn’t really taking in anything that the nurses and Drs said, I was still in shock and unable to focus and they ensured that I eat.
April 15ths facebook entry was: Nurses are hoping that Nathanial will come off the ventilator tomorrow pm! He has come a long way since Monday! Prayers still needed though - it will be a long road to full recovery. I think it was this day that my Dad came to be with us, it was great having him here. I remember this day because the Drs told me that by tomorrow evening Nathanial would be off the ventilator. I was looking forward to that moment all day. Then come evening the Drs that they would take him off the ventilator in the morning. So all day we waited and waited, I kept on hearing: “We will do it soon”, “A bit later”, “Not long now.” It must have been about 10pm on April the 16th after he had been weaned off most of drugs he had been put on, that the Drs and nurses took Nathanial off the ventilator. I felt so relieved that all the monitors were beeping the way they should and that all his vital signs appeared stable. Not long after coming off the ventilator Nathanial looked round and mouthed the words: “Mummy, Mummy.” I cannot describe to you how I felt that moment. “I’m here Nathanial. Mummy’s here.” I replied tears threatening to fall, and he smiled. Thinking about that moment now brings tears to my eyes. The Drs told me to not expect Nathanial to survive. But here he was smiling and awake. I’ve never felt such joy in my life. His life was spared. This precious little boy was going to be OK.
All things went uphill from there. Nathanial was transferred from CICU to the surgical ward, and then endocrinology ward. Nathanial’s time on these two wards were spent having blood tests and blood sugar level tests every couple of hours or so. When Nathanial was first admitted into A&E his blood sugar levels were at 50mmol/l! The norm being between 4 and 8mmol/l. After coming off insulin. His blood sugar levels dropped to below the norm. The Drs did dozens of blood tests, trying to draw blood when his blood sugar levels had dropped but by the time they got the needle in his blood sugar levels had gone back up. Needless to say, countless tests were done, and they never seemed to work the first time either. I think the hardest thing for Nathanial was to not be able to eat. It must have been about 5 days that he was not allowed to eat because the Drs needed to makes sure that his stomach was working alright. I managed to talk the nurses into letting him have an ice lolly each day, and that was the highlight of the day for him! I was very careful not to eat around him and managed to sneak away to eat when he was sleeping or when other folk were there to visit.
Enjoying one of many ice lollies.
My 27th birthday was spent in hospital with Nathanial. I couldn’t have cared less really all that mattered to me that Nathanial was well. Here is my facebook entry from that day: n is bak2 his gud old self! we r stuck in hosp til diagnosis...best bday present ever is being w/ my little boy all beta. Some friends came and we celebrated by Nathanial’s bedside. I joked that Nathanial got more presents than me on that day!! We had a McDonalds and my friend made a great cake. In fact on that day we had 3 cakes in total. It was obviously too much so we shared them with the other people on the ward and with the Drs and nurses. I was hoping that the Drs and nurses would let me take Nathanial out for a couple of hours on that day but we had no such luck. Since his blood sugar levels were still so unstable they wanted him in close proximity. Understandable.
On the 26th we were transferred to a new ward. This ward was as busy as the other one. We were transferred to this ward mid-afternoon. I think this was the day that events over the previous 2 weeks got the better of me. I hadn’t been home in a long time. And hadn’t really had time to cry! I cried in A&E and that was it. I knew I had to be strong from that moment on for Nathanial, for us. Things were made worse that day, by the man and his kid in the bed next to us. He was the pushy in your face type of person, and that wouldn’t normally matter, but on this day it did. Then the teenager in the bed opposite us had about 7 teenage friends over to visit her and they were loud. I pulled the curtains closed around us, to get some privacy from all these people. The nurse came round and told me that we weren’t allowed to close the curtains because the nurses needed to be able to see the kids at all times. Everyone else had their curtains open and didn’t seem to mind. I couldn’t cope with all these people around, and didn’t feel comfortable sleeping when all these people could see me, especially the men. This wouldn’t normally bother me, but this night it did. I lay in my bed and cried! I felt so stupid that I was letting this bother me. The nurse came round and explained to me why the curtains couldn’t be closed. I told her that on the other ward we were allowed to close the curtains and that I just didn’t feel comfortable. She said that there was nothing that could be done unless we got ourselves a private room, but there was no guarantee of that. I told her that I was just upset about everything and the little things were getting to me today. That night I was sick, spent most of the night in and out of the toilets with vomiting and diarrhea. At first I thought it was just the stress of everything, but when it continued into the morning I knew I had picked up some kind of bug. One very rude nurse insisted that I go home, I told her that I was not going to leave Nathanial on his own, she didn’t seem to understand why not! In any case being sick got us a private room! God works in mysterious ways! For 4 days I was unable to keep anything down, even a tiny sip of water. Nathanial was lively and back to himself at this point and I was ill in bed and it was hard to get Nathanial to understand that! All I really needed was to sleep. It was also at this time that Drs had decided to fast Nathanial for 24hrs to see how low his blood sugar levels would drop and to try and draw blood when they had dropped. After a consultation with the ophthalmologist regarding Nathanial’s cataract we left concluding that they operation would still go ahead.
On April 28th in the evening Nathanial was discharged from the hospital. What a great day that was. There was still no diagnosis and the Drs declared him to be a medical mystery. We had lots of Drs wanting to write a medical journal about him though. The next few weeks were spent recovering physically from our time in hospital, it has taken some months to recover emotionally!
I bought a blood sugar level monitor to keep an eye on Nathanial’s blood sugar levels but haven’t really needed it. And when I have tested him his levels have been normal.
It was end of June when we finally got a diagnosis for Nathanial’s sickness. I am pleased to say that he is all better and that has been no lasting damage. He is a miraculous little boy and incredibly lucky to be alive. And his eye operation is scheduled to take place in one week!
Playing in hospital.