Day +16: Vaseline, Vomiting & Very Loud Nurses

I don't think I'd like to see another day like today.

The day felt very, very messy. We started off with one nurse, Liezle, who didn't seem to know what she was doing. She then swapped with curly haired English Jo, who was being shadowed by a new staff member Danielle. A couple of things happened this morning after rounds, and trying to get Dr Trahair or any of his team to come and see us proved completely futile. Things that were suppose to happen at certain times today just didn't happen. The nurses took forever to answer any of our calls for a period of about 3 hours - all of them seemed frazzled and none of them seemed to want to be here. And we found out today that getting a tube of Vaseline delivered to our room was harder than squeezing blood out of a stone.

Let's start with the story about the Vaseline. Sean's lips had become quite dry over the last few days, and they were cracked and peeling and looked quite sore. Emma, our day nurse yesterday, mentioned that we should put some Vaseline on his lips to help moisturise and soothe the pain. She had looked for some Vaseline, but the ward seemed to be fresh out of supply, so she was going to try and get someone to call down to the pharmacy and get some sent up. Nothing arrived, and before she went home, Emma said she would put everything in the notes at handover, so the next nurse would know to try and find some Vaseline for Sean.

Simone looked after us last night, and knowing the pharmacy was closed by the time she started her shift, she made sure to include Emma's request for today's day nurse. We were assigned Liezle, who had not looked after Sean before today. I was still half asleep when Simone was doing the handover with Liezle, but I did hear them talk softly about what medications Sean was on, and I heard Simone say the word "Vaseline".

I spoke to Liezle about the Vaseline a bit later on, and she said she would go and hunt for some for us this morning. During rounds this morning, the pharmacist (also named Emma) joined the team in our room, and I directly requested some Vaseline from her. Emma promised to look for some and bring the tube up for Sean as soon as possible.

Nothing arrived, so when curly haired English Jo and her shadow Danielle came into our room to let us know they were swapping with Liezle for the day, we asked them to look for Vaseline. They both promised to track some down.

Meanwhile, Sean's lips were getting drier, and even though I was moisturising his lips with my lip balm, he kept licking the balm off his lips.

All afternoon, every time any of the nurses saw us, they would assure us they were looking for this elusive Vaseline. For hours, it seemed every nurse on our ward was calling every ward in the hospital, looking for some Vaseline for our little boy. It was completely farcical.

Finally, one of the nurses appeared with a small tube of lanolin, which we felt was just as good as Vaseline, and liberally smeared the lotion on to Sean's lips. In the time it took someone to appear with something for us to use, an incredible 24 hours, I could have walked to Top Ryde Shopping Centre, bought some Vaseline, and walked back.

Laura, our clinical nurse consultant, appeared late in the afternoon and told us that in her personal opinion, lanolin should not be used on Sean's chapped lips. She said she would have preferred to see us use Vaseline, but since no one anywhere in the hospital had any, she said she would have used soft white paraffin. Which we had. A big 50g tube. Sitting in our drawer. All this time.

*Sigh*

Feel free to insert here all the swear words you can think of. Plenty were screamed silently in my head at this point in time.

When Laura came to see us, it was the second time today that we'd talked to her. She was with Dr Trahair earlier today during rounds, when Dr Trahair confirmed the switch of all medications from intravenous to oral consumption. 15 minutes earlier, Liezle had given Sean a dose of both immuno-suppressant drugs, something to treat fluid retention, the prophylaxis to prevent against liver disease, and a great big water flush to get all the drugs down the tube. Just as the team was assembling outside our room, Sean vomited every last drop of medicine and water, and everything else that was in his belly. Despite seeing Sean vomiting all the drugs, which now needed to be repeated and given again, Dr Trahair was still keen to push along with the programme and have all the medications given through the tube.

Laura gave me some guidelines to follow - give one of the immuno-suppressants first, wait 15 minutes, then give the other immuno-suppressant, along with the rest of the medications. Sean has always hated anything other than a slow trickle of milk going into his belly down that tube, so I made sure I pushed the medications in slowly. I was so slow, Sean didn't even notice I was giving him medicines.

30 minutes later, we saw the entire contents of Sean's stomach again. And this time, he continued to retch even when there was nothing else to bring up. Poor baby.

At this point, both Jonathan and I felt the swift move of all medications from IV to oral intake was just too much. We wanted the doctors to ease Sean into the whole thing, maybe swap one drug at a time, so we asked to speak to the doctors. English Jo all but shouted us down, saying that we should agree to give Sean some anti-nausea drugs prior to the next lot of medications, and see if Sean tolerated the medications better after some anti-nausea drugs. We still wanted to see the doctors, any doctor, and English Jo promised to track them down for us.

None of the doctors ever came to see us. It was left to Laura to organise and chart the anti-nausea drugs to give to Sean prior to the next round of medications. I begged Laura to get Dr Trahair to change his mind about switching everything over all at once, but Laura said that this was the way things happened around here - quick and efficient and all at once, but if Sean was to continue vomiting his medicines, then the team may think about a slower approach.

Great. I was not supportive of this tactic, but as Dr Trahair was nowhere to be found, we were going to have to live with it. Fortunately, Sean kept down all the medications tonight, after some anti-nausea drugs. I hope he continues to hang on to his meds - he needs them to get better!

Whenever I have dealings with Laura, I always felt messy afterwards. Laura always had so much information to give us, and a lot of the times, there didn't seem to be any order in which the information was spewed out to us. I would come away with disorganised information, and I always felt I needed to sit and sift through what Laura had just told us. Talking to her this afternoon added to the messiness that had been our day with the nursing staff.

After Liezle fumbled around giving Sean's medication early in the morning, we were informed by English Jo that she and Danielle were going to swap with Liezle and look after Sean today. It came to light that Liezle didn't have a lot of experience looking after transplant patients, and the protocols and procedures and the sheer number of lines and pumps were a bit much for her today, hence the swap. English Jo is loud. Very loud. I wasn't sure if she knew how loud she was, but if I had a choice, I would not have her look after Sean. Mainly because she is loud. And today, she was louder than usual.

As English Jo was showing Danielle the ropes, she needed to explain what she was doing and why. Liezle stayed on looking after Sean for a little while in the morning, and English Jo decided it was only fair to make sure Liezle also knew what English Jo was doing and why. English Jo ended up giving several demonstrations with rather loud commentaries in her "show and tell". I could feel a headache coming on.

English Jo had a play with Sean around mid afternoon, when Sean was having his Intragam transfusion. The Intragam was suppose to be given in the morning, but because Sean vomited, he needed to increase his fluid intake prior to the transfusion, so this procedure didn't actually start until about 2.30pm. Sean needed to be monitored closely throughout the transfusion, so English Jo stayed in our room and played with Sean. Loudly. Argh!!!

Earlier in the day, when Sean was still asleep, English Jo walked into the room and asked loudly if the little man was awake. Jonathan shushed her, but her loud voice had pierced the dream bubble and Sean was awake. Great. Thanks.

Although English Jo was very good at her job, I felt she was a bit frazzled today, and it became evident that the ward was a bit short staffed. We had had to ring the nurse call buzzer a few times today, and often, it took 5 minutes for someone to enter our room. Most of the time, we just needed a nurse to reset whichever pump was beeping, but with a full ward and only a few nurses, we would get some attention when it was available.

The frazzled look extended to the other nurses on the ward too. On my way to the kitchen to get some water for Sean, I noticed all the nurses were standing in the drug room, talking amongst themselves. I'd hit the call button as I was leaving the room, as one of the pumps was beeping like mad. I was in the kitchen for a couple of minutes, washing Sean's bottle and refilling it, and when I walked past again to return to our room, the nurses were all still in the drug room, still talking. The bits I overheard was their shared dismay at their extra workloads today, with the ward full of sick kids needing attention.

Meanwhile, our room wasn't the only room buzzing for a nurse. The little "blips" that signify the call button had been buzzed were sounding loudly throughout the ward.

Overall, it was a really, really messy day. It felt disorganised, and left me feeling quite out of sorts. I only hope we don't encounter another day like this for the rest of our time here.

In other news, the morphine was turned down again today. Sean seemed to be handling his aches and pains well, so there was every chance that the morphine would be disconnected by tomorrow. Yay!!! Dr Trahair was still a little concerned about Sean's weight, but the situation was under control. Based on the blood test results, Dr Trahair was confident in saying that engraftment took place on Tuesday, exactly 2 weeks after the transplant.

Sean was definitely more cheeky today, and his energy levels seemed to have increased somewhat too. Kylie came by with a few more things for Sean - we'd asked her to laminate some cut outs and stick them on to paddle pop sticks for Sean to play with, and he loved his new toys. Sean showed us today that he was growing taller and taller, despite everyone telling us that chemotherapy and stem cell transplant would stunt his growth. Two and a half weeks ago, when I finished the elaborate hanging mobile for Sean, I'd asked Jonathan to hang it from the ceiling, high enough for Sean to see all the colours and sparkles dance around the ceiling, but low enough for me to still be able to reach the lowest hanging objects and help the mobile spin and dance. We thought we'd hung it high enough that Sean wouldn't be able to touch the lowest fluffy bauble. We were wrong.

Sean showed us how his long reach was, and standing with his feet flat on the mattress, without being on tippy toes, Sean was able to stretch up with his index finger and touch the pink fluffy bauble. Sean was completely delighted with this latest achievement, and kept doing it over and over again. Each time, the look on his face screamed "Look at me, Mummy, are you proud of me?"

We were not sure if chemotherapy and stem cell transplant would end up stunting his growth. As Niall said over lunch yesterday, if Sean's growth was stunted, he would probably end up being normal height for an Asian kid, instead of becoming a freakishly tall Asian kid.

Sean crashed earlier than usual tonight - around 7.45pm - I suspect the vomiting and the stretching wore him out. Simone has just given Sean the oral medications after a dose of the anti-nausea medicine, so fingers crossed Sean doesn't vomit it all up. I really hope tomorrow is going to be more smooth sailing than today.