Our Vanilla Boy

Our darling little man has a brand new accessory. A nasogastric tube.

After much discussion, and several attempts to delay the inevitable, we went to hospital on the afternoon of Monday 20 February to have a nasogastric tube inserted into Sean's stomach. All morning, I had dreaded this horrific procedure, as I can still recall the discomfort of my very own nasogastric tube when I had my appendix taken out. I was 5 years old. And I've never been able to forget that horrific experience.

Sean must have sensed something was going to happen, for he was quite clingy and whingey all day long, and he took extra time to eat his breakfast and lunch, which really tested my patience. During Sean's morning nap, I cooked a mountain of my special rainbow fried rice, and divided them into 4 portions, 2 to be taken to the hospital for our dinner, and 2 to have at a later time. Jonathan went to work in the morning, with a view to meeting us at the hospital afterwards. We'd packed an overnight bag on Sunday night, so after lunch, we headed off to the hospital.

We found ourselves back on the Oncology Ward (C2W), and I found myself hoping we would be looked after by one of the nurses who had looked after us on our previous visit. Alas, the face that appeared wasn't familiar, but she was nevertheless very lovely.

About 30 minutes after we arrived, the nurses were armed and ready to insert the tube into Sean. The moment I'd dreaded had finally arrived. Poor Sean became very upset, with me and a nurse holding him down while another nurse tried to insert the tube. The first attempt was unsuccessful, and the trauma of the failed insertion caused a bit of bleeding in Sean's left nostril.

Sean needed a few minutes to recover from the entrapment, and I tried my best to comfort and soothe him while fighting back sobs of my own. After a while, a third nurse was called in to help, and the four of us tried to get the tube through Sean's left nostril and down his stomach. By this point, Sean's screams and cries were making me even more distraught, and I stood back to let the nurses do their thing, and waited until it was all over before scooping up my hot sweaty hysterical little man for cuddles and kisses.

Half of my beautiful boy's face was covered with tape, shielding a yellow tube that snaked out of his right nostril and across his right cheek. Sean was covered in sweat and so incredibly upset, so I held him and rocked him and sang to him, hoping he would settle down. Just as he was becoming calmer, Sean threw up.

Blood. Phlegm and blood. All over both of us.

Sean let out a blood curdling scream. Loud and high pitched. Sean screamed and screamed and screamed.

We were sitting on the armchair when Sean threw up blood and phlegm, and the call button was out of reach, hooked on to the cot. The sight of Sean's blood and phlegm paralysed me, and I couldn't move to get to the button. I sat in the armchair, holding my hysterical screaming baby while yelling "help", hoping someone, anyone, would come into the room to help us. After what felt like 10 minutes of yelling, to no avail, I found my legs were working again, and holding Sean close, I moved over to the cot to grab the call button.

A nurse finally emerged, and said "Oh, were you calling for help? I wondered who was yelling out." Through my sobs and Sean's screams, I told her that Sean had thrown up and showed her the blood and phlegm that covered both our fronts. Rather curtly, the nurse said "Yes, that can happen, especially during a traumatic insertion (of a nasogastric tube), and this one was on the traumatic side." I wanted to snap at her and scream "Well, you coulda told me!", but by this point, I just wanted to get both Sean and I out of these bloody gunky clothes.

Sean and I were both exhausted by the time Jonathan arrived at the hospital. My poor baby was still crying, and Daddy's comforting arms helped to settle him. I went in search of some washing powder to wash our dirty clothes.

Before long, it was dinner time, and Sean was finally calm. We were tentative with Sean, as he had been upset, but the little man seemed hungry, so we fed him a regular sized meal. Unfortunately, it all proved too much for him, and for the second time in 2 hours, Sean threw up again.

We got Sean cleaned up and sat down to give him cuddles and watch him play. Neither of us were hungry after the events of the afternoon, but we knew we had to eat to keep up our strength, so I reheated the fried rice and we ate our dinners without really tasting anything. The night nurse came in and introduced herself, and asked us if we were ready to be trained on how to tube feed Sean overnight. We watched without really taking in the information - there was a pouch which held the milk, and it had a clamp and a chamber which are all hooked up to a tube, and there were syringes to aspirate and flush Sean's tube, and litmus paper to test the pH levels of Sean's stomach contents. The nurse did everything quite quickly, but as we were both too fried to take notes, we asked the nurse to show us again in the morning.

The nurse hooked up the milk to Sean's tube, and Jonathan fed Sean a bottle before heading home. The nurse started Sean's feed at 10mL per hour, and would gradually grade the feed up every couple of hours. Between the nurse entering the room to increase Sean's feed, and Sean being upset from his dreams and needing to be comforted, I was woken once an hour throughout the night.

Sean woke up at 6am on Tuesday morning, looking refreshed and happy even though he was still a bit concerned about the tube. The nurse came in and turned off the pump, and we sat and waited for Sean's body to metabolise some of the overnight feed before weighing him and feeding him some breakfast. Sean ate as much as he could, but it took even longer than it did on Monday morning. The day nurse came in at one point, and told us that Sean may have a sore throat from the tube insertion and could be off his food a little. Excellent. Another helpful hint that should have been given to us PRIOR to the tube insertion!!!

Jonathan arrived just as we were finishing up with breakfast, and we had visits from Dr Gray and Dr Percival and Jennifer to see how the overnight feed went. Dr Gray and Dr Percival had lined up a barrage of tests for Sean on Tuesday, so that the doctors could start to get a baseline of Sean's functions in the lead up to the transplant, with the results from these tests to be used to measure Sean's progress once the transplant process starts. First cab off the rank was a trip to the audiologist to have Sean's hearing tested. Sean's ears were "gunky" again, and the audiologist wasn't keen on doing all the tests if Sean's ears had any kind of infection, so we started with a hearing test. Sean was doing well to start with, but as it was getting close to morning nap time, his interest waned and the tests were concluded earlier than the audiologist had anticipated.

After lunch, we had a visit from the dentist, who had a good look at Sean's sharp teeth. She was happy with what she could see, and the examination was over in a flash.

We were to have a visit from the cardiologist as well, but we were told around mid afternoon that he wasn't coming after all as he didn't have access to some machine.

Jonathan went to the equipment hire office and hired the feed pump and buy all the other bits and pieces. Jennifer had left a couple of forms for us, which listed everything we needed to continue giving Sean overnight feeds. She also gave us a few tins of PediaSure to tie us over until our order arrived. Jonathan came back with a HUGE bag of syringes and big box of milk bags, as well as the pump. So many things to learn. The nurse gave us another demonstration on the pump, and gave us a chance to play with the equipment a couple of times before discharging us from hospital.

Bedtime was a new experience for us. After giving Sean all his medications, Jonathan sat down to give Sean his bottle while I got everything organised for the overnight feed. There were so many things to remember: clamp the tube of the milk pouch before pouring the milk into the pouch, shake the tin of milk, pour the milk into the pouch, hang up the pouch, turn the chamber upside down and unclamp the tube to partially fill the chamber, reclamp the tube, turn the chamber right way up and unclamp the tube again, so the milk flowed through the tube to the tip, reclamp before the milk flowed out, put the chamber into one slot in the pump, wrap a part of the tube up to the other slot, lock off the tube at another spot, fold Sean's tube over to stop anything from the tube leaking out, put some litmus paper into a syringe and attach the syringe to the tube to aspirate some of the stomach contents to test the pH levels, fill another syringe with 5mL of boiled water and flush Sean's tube, attach the tube from the pump to Sean's tube, unclamp the tube from the pump, turn on the machine and set it to feed Sean 40mL of milk per hour overnight.

The entire process took a long time, but I'm sure we'll learn to be quicker as time goes on.

I have spent most of today trying to find the best spot on Sean's back to tape the dangly tube, so that he could still run around and get into mischief without getting caught or stuck. I also had to learn how best to hold Sean, so that I don't damage the connectors or have them dig into Sean's back.

The sticky plaster on his face had become loose over the last couple of days, and the bath last night probably didn't help as Sean managed to get a bit of water on his face. We had to change the tape tonight, and trust me when I say it was a horrific experience for all involved. Jonathan had to almost sit on Sean to hold him down while the tape was being peeled off Sean's face, and I had to weave and dodge to get the new tape on, and then get the tube stuck down, all the while Sean was screaming his head off and struggling like mad to get free. During this horrific exercise, some of the tube was pulled out of Sean's nose, so we had the unenviable task of pushing the tube back into Sean. Sean did not like that one little bit.

Our little boy now smells like vanilla, all the time. The PediaSure milk has a very strong vanilla smell, and Sean seems to be walking around with an aura of vanilla. Our sweet boy has become our Vanilla Boy.

Jonathan is now trying to get the little man to go to sleep. We are definitely getting faster and more confident at prepping the overnight feed, and unless we touch his face, Sean seems to have forgotten he has a tube in his nose. It's not so easy for us to forget, and every time I see the tube, I get a bit tearful. But on the up side, the tube is going to give Sean a bit more nutrients to get bigger and stronger, as he will need both the extra weight and strength come transplant time.