April 10, 2012

Day +14: Momma's Feeling Fragile

Today marks 3 weeks since we were first admitted to hospital.
3 long weeks.
21 very long days.
Away from home.
Away from our bed.

The time away from home and all the comforts that come with home was getting to me, and today, I felt fragile.
Any little thing upset me.
Everything little thing upset me.

I miss our home. I miss being at home.
I miss seeing my little man run around our house. I miss seeing my little man without any lines attached to him.
I miss our clean kitchen.
I miss being able to have a shower whenever I wanted, and not have someone jump the queue with full knowledge that I was next in line.
I miss being able to do my laundry whenever I wanted, and not have to wait until someone else's load was finished.
I miss our TV and all the shows that I normally watched.
I miss our bed. I miss falling asleep next to my darling husband. I even miss Jonathan stealing all the blankets from me.

I was getting upset over the smallest of things. Whereas I would have been able to brush it off in "normal" times, or at least see the funny side to it, I was finding the same little things annoyingly upsetting. Maybe I was just suffering from a bad case of cabin fever. Maybe I was just tired. Maybe I was just being overly sensitive because I was suffering from a bad case of cabin fever while feeling tired. Whatever the case may be, I was feeling very fragile. Pity the poor fools who were upsetting me.

A few days ago, my annoyance was directed at the mother of the child in the shared ward next to our room. Numbnuts (not her real name) had been doing a number of things to get on my nerves, namely that every time she walked past our room, she peeked in. And not just a short peep - she'd slow down and stare intently into our room. I'd stared back at her a number of times, thinking my stares would shame her to stop her peeping tom behaviour, to no avail. Not wanting to physically confront her and tell her to stop staring, I sucked it up and brushed it off. The staring was wearing thin on my patience though, and I was going to say something when Numbnuts did something to put me completely over the edge. She decided to jump the queue and cut in front of me while I was waiting for the one communal shower.

Numbnuts had seen me waiting for the shower, but when the shower became available, she still decided to cut in front of me. All because I chose to give the person using the shower some space and privacy by waiting in a room all of 2m away from the shower room, instead of blocking the door to the shower and all traffic in and out of the bathroom facilities.

The parents' bathroom consists of a toilet, 2 hand washing basins, and a shower. As you enter the bathroom, the basins are on the left hand side, and the door to the shower is on the right, with the toilet just past the basins. The whole area is about 4m x 3m from wall to wall. To say the very least, there isn't a lot of room in there. If someone is at the basin washing their hands, one almost feels like one has to squeeze in sideways to get past to the toilet. With such limited space, to stand at the basin to wait for the shower just felt wrong. So my rule was to wait in the parents' lounge, which is literally 2m away from the bathroom door.

I'd already seen someone cut in front of me, but I gave her the benefit of the doubt as she hadn't seen me sitting in the parents' lounge. When Numbnuts entered the bathroom, I'd jumped up and ran to the bathroom to see if she was trying to use the shower before me. She was going into the toilet, and we made definite eye contact, so I assumed she knew I was waiting - after all I was in my pyjamas, carrying my towels and a change of clothes and my toiletries bag. But you know what they say when one assumes anything - I made an ass out of me. And Numbnuts was already an ass.

Instead of popping her head out of the bathroom area to see where I was, Numbnuts jumped into the shower the minute it became available. I had been waiting 30 minutes for the shower by this point. Feeling completely jipped, I vented my frustration to the mother who had unknowingly cut in front of me, loud enough for Numbnuts to hear every word. When she came out of the shower, she tried to apologise, but I wouldn't have a bar of it. Numbnuts had every excuse under the sun: that she thought I'd gone away, that she didn't think I was waiting for the shower, that she was tired and didn't think. I was beyond caring. I pushed past her and slammed the door in her face.

The confrontation put me in a foul mood for the rest of that day. But it did stop Numbnuts from looking into our room, or make eye contact with me again.

Jump forward to today, and I was feeling even more fragile. And anyone looking into our room was going to cop it.

The teenager in the room next to ours has a very, very, VERY large family, and for the past few days, they had come in big groups to visit. As every transplant patient was allowed up to 4 registered people in the room, every other visitor was allowed to come all the way up to the door, and look in the glass and talk to the transplant patient through the intercom. Due to the sheer number of people, those waiting their turn to look in the window and talk on the intercom often waited directly outside our room, blocking our door, and looking into our room to pass their time.

Every day, I shut the blinds when the teenager's family visited, because every day, they stood outside our room and looked in. These visitors weren't content with just looking in the glass - they pressed themselves up to our window and cupped their arms around their heads to get a better look. A complete invasion of privacy, and they had no problem with doing this to us, even though I was sure they would have a HUGE problem with us doing the same to their sick teenager.

What was most upsetting for me was the fact that these people did not seem to respect our space or privacy. For all intents and purposes, the room housing Bed 17 on C2 West at the Sydney Children's Hospital is our home. And just like any home, you wait to be invited into the home before barging in. If you were at home and a stranger pressed right up to your front window to look into your house, you'd call the police. Even when you were expecting your visitor at home, seeing a face pressed up against the glass would still make you jump and feel uneasy.

Since admission, I had tried my best to respect everyone else on the ward. If I needed to use the washing machine, only to find an earlier load was finished but not yet moved into the dryer, I'd move the washing into the dryer and turn it on prior to starting my load of washing. If my washing was finished and needed to go into the dryer, but the dryer was full of dried clothes from a previous user, I'd take the dried washing out before moving mine in. More often than not, I'd fold the laundry - someone had folded my laundry once before, and I could still remember how nice it was to walk into the laundry to find my clean clothes all folded neatly. I'd spent hours cleaning and tidying the kitchen, as some people had no idea how to respect a common shared space. And every time I'd walk past a room, whether the door was opened or not, I would respectfully avert my eyes. I really wanted and hoped that other people would do the same for me as I did for them. Sadly, not everyone felt the same way.

In hospital, the walls in the room can feel like they are closing in on you. This is one of the reasons why the medical team encourages the carers to go for walks and get out of the room for a length of time per day. Easy for them to say, but when you are worried about your child, you tend to stay put. You can become a bit precious about the condition of the room, the amount of noise people make around your sick child, the space you have, and the limited amount of privacy that is afforded to you with medical staff coming in and out all day long. And when people start to mess with any of these points, you lose your cool. Like I did today.

Today, the whole village came to visit the teenager. I needed to go to the toilet, and found it difficult to get out of our room. There must have been at least 30 people blocking the corridor, all waiting to take their turn to talk to the teenager and look into the window. Having run out of space in front of Bed 18's room, the teenager's family blocked the front of our room. While waiting their turn, some of them decided to look into our room to ease their boredom.

It was confronting to see so many people - I was surprised the staff even allowed that many people to block the corridor like that. Most of the people stood up and down the hallway, some had taken chairs from the shared ward and positioned them along the walls in front of our room, as well as in front of next door. I had to push past people to get to where I needed to go, so I made a comment about how many people were present. The feedback was "This isn't even the whole family - wait till we all come to visit." No, thank you, but no. I don't want to wait for that. I actually don't even want to see that many people blocking the corridor again.

Sean was asleep at the time, and one of my major concerns was that these people would accidentally wake him. Sean needed his sleep to help his body heal, and we always let him sleep as much as he wanted or needed. We always kept the noise to a minimal when Sean was sleeping, and hoards of people unrelated to us standing outside our room could cause a disturbance and wake Sean from his precious sleep.

Our son's contact with the outside world was limited to us and 4 registered people, to reduce the risk of all kinds of infection to Sean. We had dutifully told our friends to limit their visits to the hospital, not only to reduce the risk of infecting Sean but also the risk of our visitors sharing the germ love with other sick kids on the ward. As I walked past Bed 18's family / fan club, I could smell, amongst other odours, stale cigarette smoke, with the strongest smell emanating from the big man right outside our room.

With the crowd blocking the hallway, if Sean was to suddenly fall ill and required urgent medical attention, the medical staff would have trouble getting past the hoards to get into our room. In case of emergency, I would want the medical team to be able to get to Sean as soon as possible, and if the extra 5-10 seconds they needed to get past the group affected my son's care, then that was not on.

I wanted to yell at all of them to get the hell away from our room, to respect our space and privacy, and to take their foul stenches away from us. I wanted to push them all away, cordon off the front of our room and mark it "Sean's space - keep out". I wanted the nurses to eject them from the ward, and to limit the number of people allowed to visit the window at the one time. 5 or 6 in front of Bed 18's room was fine - 30 was not.

I got upset. I probably didn't need to get upset, but I did. But I didn't want to confront this rather large group of Aborigines, who were all stressed out enough about their kid being sick, and there were a lot of them and one of me. So I went and asked one of the nurses to tell them to move away from our room. And when they didn't move, I asked another nurse to do the same. Eventually, they moved. Just as well they moved when they did - I was about a minute away from physically moving them on myself.

I asked Jonathan if I was justified in getting upset about this, and he agreed with me that the number of people blocking the hallway was a concern, and could prove to be disruptive to Sean. I was pretty sure Jonathan appreciated me being protective of Sean, and I was glad to see that the nurses were supportive too.

Feeling the way I felt today, I really hope the teenagers' relatives are a bit more considerate tomorrow. I really don't want to be more upset, nor wish to upset another patient and his family.

On top of everything else, Sean's blood sample taken at 4am was reportedly tainted and the nurses had to get another sample this morning, which meant the results from Sean's blood work were late arriving back on the ward. The doctors had expected Sean's platelets level to be low, which was confirmed quite late in the afternoon. Platelets were ordered, and we waited hours and hours and hours for these platelets to arrive.

There were some brightness during the day, when Kym and Verena (the music therapists) came to play with Sean. Sean enjoyed the music and playing with the ukuleles the ladies brought, and we sang and danced and played music for a time. Kylie the play therapist also stopped by, and introduced Sean to finger painting. Sean eagerly put his hands into the brightly coloured plate of paint, but upon feeling the texture, he yelped and got a little bit upset, before gagging and looking like he was going to throw up. I quickly wiped the paint off his hands, and Sean recovered his composure to enjoy some painting with the paint brush. Many masterpieces were produced, and Kylie promised to laminate them once they were dried, so we could take them home with us.

The brightest light came in the afternoon, when Lissy appeared at our door. After the earlier upset, I really needed a friendly face, and I was so glad to see Lissy. Lissy came bearing food again - a generous portion of her Chicken A La, a family recipe that was comforting and warm. Sean was playful and showed Lissy his "wiggle waggle wiggle", and was generally in a good mood. Lissy stayed with us for a couple of hours and chatted, and we made plans for her to visit again with her husband Dave, so he could take Jonathan out for some "man time" and us girls could stay in and chat.

We enjoyed the sweet warm goodness of Lissy's Chicken A La for dinner - it was so good, and we really needed a wholesome, homemade meal. Every bite felt like a warm hug from Lissy, and it was great to the very end.

I am emotionally exhausted. I need a good night's sleep. I didn't get a great night last night, with Sean's feed line kinking throughout the night and setting off the alarm on the feed pump. Naomi was clunking around a bit and making a bit of noise, but I am tired. The platelets finally arrived just over an hour ago, and the transfusion finished not long ago. Luckily, Sean slept the whole way through the transfusion, which I hoped he would, but there was always a chance he would wake as Naomi needed to monitor Sean's heart rate, blood pressure and temperature during the transfusion.

I'm looking forward to tomorrow. New day, fresh start. Hopefully, I'll feel less fragile in the morning.

Last but not least, Happy Birthday Dave. Hope you had a lovely day today and Jolie and Alyssa and Tammi looked after you on your special day!

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