A day in the life of this mother
Argh- the past week has been really good. Â Lots of happy people skipping into Aria’s room singing positive songs about Aria’s health.
Yesterday however the song hadn’t changed but for some strange and bizarre reason everyone from the surgeon to the cleaner managed to make me mad. Â You see I have waited a good 12 hours to decide whether to post this but decided I would because we intend to be honest about our life in hospital and that it isn’t sunshine and roses all the time.
I arrived and they were giving Aria a bath. Â This just makes me mad. Â Aria hates having baths and this is something we want to be there to help her with plus it is one of the few cares we can actually do for her. Â As soon as Aria see me she motions me to come over but I can’t get to her because the nurse is on one side and the tech on the other.
Rounds were a disaster, honestly sometimes I just walk away from them going ‘what just happen? why the heck am I so upset?’  I don’t even get it, it is truly weird.  I asked about them tacking down Aria’s diaphragm during her next transplant just to double check it would happen.  Unfortunately my question seems to be ill timed, don’t know why, was just a question.  Apparently it isn’t that simple and this issue isn’t important and has taken on a life of it’s own etc etc.  What!?  I kept saying ok ok ok just so they would leave.  It was awful.
Trying to recover from that and speak to Hamish on the phone to get his sense of this and his take on what on earth happened at rounds proved tricky. Â Aria decided to take a nap- perfect. Â Gave me time to regroup, fix my panda eyes and sort my head. Â Except keeping people out of her room proved a tough mission.
The tech came in wanting to do vitals on Aria- blood pressure and temp.  I knew this would wake her- would you sleep thru someone squeezing your arm?  I asked nicely if we could please wait and she replied curtly ‘sure’ and threw her gown in the linen bin causing the lid to bang down loudly and walked off.  I could be wrong but I just got a vibe of attitude particularly when she caused the loud bang and didn’t apologise.
Finally I went to heat up my lunch knowing Aria would be awake soon.  Half an hour to eat in peace.  Bumped into PT on the way back, ok definitely only half an hour because she wanted to do Aria’s exercises soon.  Got back to the room and the nurse AND cleaner were in there. Nooooooo.  The nurse, thankfully didn’t wake her.  And I managed to intercept the cleaner before she got into the room.  But again not without angst.  Again I asked nicely, with my hot Tikka Masala in hand, if she could please wait to clean Aria’s room because she was sleeping and wanted a quiet room.  She replied ‘I am just going to mop and wipe the counter’  I said fine and shrugged my shoulders feeling completely defeated in that moment.  It was a very hard to deal with for some reason.  I guess I struggle with the fact I can’t even eat my lunch in peace without having to ask someones permission and they may not even grant me that request even should I ask.
Anyway – Aria woke up later and she did awesome at her exercises and preschool. Â She asked to go for a walk so we did and she seemed to look happier and bright eyed afterward. Â So the day got better thankfully.
This is so hard, we have been at this 5 months and probably have another 5 months ahead of us. Â Hospital life is tough.
29 Responses to “A day in the life of this mother”
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# 8 May at 5:24 am
you would think a little consideration wouldn’t be to much to ask for. Pleased Aria got to go for her walk after preschool.Lovely to talk to you today
# 8 May at 6:23 am
Sure wish I could wave my magic wand and have “A+” staff with you EVERY day!! So sad that you had such a bad day. Aria is a jewel in that she has so much to put up with and yet smiles and continues to put forth her best effort. May you be blessed with a much better weekend! Love you guys!
# 8 May at 6:26 am
Sorry that these things are upsetting and frustrating for you.
I may have a small insight as a kiwi having lived in the States for a while.
Fairly frequently, I would get attitude ofrom people who didn’t know me at all or at least not very well. At first I didn’t get it, until some of my friends said that perhaps my “Britishy accent” could make me sound snobby, uptight or pretentious. After knowing me a while they found their presupposition ridiculous – they just hadn’t realised how down to earth NZers actually are.
Hugs – hang in there,
Alisa
# 8 May at 6:59 am
🙁 I hate those days. Sadly the longer you are in the more cracks appear. Bath rooms are good to cry in and notes on the door work wonders. Thinking of you.
Hugs.
# 8 May at 7:03 am
Big ((((HUGS)))). It sounds like you are sooooo over hospital life at the moment. My friend and I used to say, stop the world I just want to get off for a while and watch it spin, and then i’ll get back on! I pray that tomorrow is a better day for you.
It’s nearly tomorrow here for us (mother’s day), I really hope and pray that you have as nice a day as possible given the place you are in.
Happy mother’s day to a fantastic and special mum 🙂
Belinda xxxooo
# 8 May at 7:08 am
Sometimes you just have to get it all off your chest… (just ask carol) ;o)
We hope today is going to be a good day!!! xx
Luv and hugs hon xxxx
# 8 May at 7:22 am
Great you can vent your frustrations. I cannot believe you all handle this so well. I would have cracked up long ago.”Be still and know I am God”
He is still in control and understands.I pray today is better and you have a nice Mothers Day.May you be blessed in a special way.Praying for organs.
# 8 May at 9:08 am
Its good you can express your thoughts, dont feel you should hold back venting these feelings here, we are mostly sitting in our homes and not having your everyday trials, its a healthy way to deal with your situation, I would imagine its a situation of sometimes being a spectator and feeling powerless having to share the care of Aria, from what I viewed of your parenting on TV doco you definetly are intellegent caring parents. Its a long time to be in hospital and not a normal routine for any parent,. I hope you are receiving big hugs and care for energy,
# 8 May at 9:23 am
Thank you for sharing your heart with us. There are no clear cut answers…and I don’t think it has a thing in the world to do with US vs NZ vs Tim-buck-too. Honestly, if “people” are involved, then it’s bound to happen at some point or another. I can SO VERY MUCH relate to what you are saying, and I also found at times a note on the door helped greatly. (however, it usually just depended on who was working that day…sad to say) I can remember just wanting to cry with some nurses or techs and yes even drs some days…or either scream at the top of my lungs to STOP! I guess it just makes us appreciate the good ones even more.
The visual of Psalm 23 is what I am praying for you all today!!!!!
Love you…..keep on keeping on! You are being lifted up all over the world…
# 8 May at 9:37 am
Oh Anita… I can guess who’s on service & I soooo understand your frustrations. Not that that makes it any better, I know. Hospital life is so, so hard – especially in the PICU. I think sometimes the medical staff forgets that we LIVE there. There is no privacy, many days you can’t even talk on the phone. I don’t have any helpful suggestions – you are in an impossible situation & I pray so hard for the day it is all behind you. You’re doing an incredible job. Aria is so very lucky to have you by her side :).
# 8 May at 11:58 am
Seriously, it sounds like a few staff members there need an attitude adjustment! You’re a mom who has a daughter who is sick & in need of another transplant. It isn’t easy at all being in that situation! The least they could do was grant your request! I would complain about them! I’m glad that the day got a little better at the end though! I hope today has been a better day for you! God Bless!
# 8 May at 12:04 pm
Sounds like you need a *huge* “Please do not disturb – Aria is sleeping” sign on her door to keep everyone else out. She can’t heal if she’s sleep deprived. Seems quite reasonable! If that doesn’t work, maybe the docs would be willing to write orders that she not be disturbed when sleeping unless it’s critical? Hang in there!
Jen
# 8 May at 3:26 pm
your in my prayers Anita
Im sori the hospital staff cant be a little more considerate
totally awesome that Aria had a good time with her exercises and preschool
Aria is very blessed to have you as her mum
its Mothers Day here in New Zealand I pray you have a nice day HUGS
# 8 May at 3:41 pm
Happy New Zealand (amazing) mothers day Annita!!!!!!!!
# 8 May at 3:42 pm
Happy New Zealand (amazing) mothers day Annita!!!!!!!!woops Anita
# 8 May at 3:46 pm
I can tell you that what you are feeling is perfectly normal and you are a Mum saying I want my child to sleep leave us alone for a while. Give us some normal time. I have been in your position and I know how hard it is to feel what you are feeling. Just stay strong and you will get through. Hospital life is hard and you will always have your good days and your bad ones. Stop, look and be proud of the wonderful Mum you are.
# 8 May at 5:02 pm
Such a hard place to be, I am a paeds nurse in nz and often see staff doing this, as others have suggested signs can work, that way you don’t have to confront staff who often have the attitude I’m busy doing my job all I have to do is a quick BP or quick mop of your floor then I’ll b out of your hair, what they can’t appreciate is this is your life, you live it everyday you don’t hand over at the end of your shift and you don’t get days off to come back fresh.
Hope you have a lovely NZ Mothers Day!!!
Lisa xx
# 8 May at 5:27 pm
I sometimes fail to understand hospital staff (not always, but sometimes, and not everyone, but boy do the ones who spoil it, really spoil it). I think it is exactly as Erika says – they forget you LIVE there. Every minute of your day. I have only been in hospital maybe a week of my life, and it was when my girls were born, and I remember the numbers of people who would just whip that door open and come in, without any thought or respect for you, no matter what you might be in the middle of. I wrote a sign and put it on my door that said “Please knock before entering”. You would have thought I’d put up a sign full of swearwords by the way that went down, I was harassed for the rest of the day by some staff who apparently found it insulting (!) and in the end, I was intimidated enough to remove it. But I ask you, is that too much for a patient to ask? A one-second courtesy, just so the person behind the door knows it’s about to open? I found out it was.
I cannot even IMAGINE how defeating it must feel for you to have to live this for so many months, as if you don’t matter in the scheme of rounds and shifts and routines (though I know you will have some lovely people involved in Aria’s care too, and lots of lovely days and times when you are touched by someone’s care). You are completely vunerable to other people and their moods, as they go about their shift, and you go about your every day life. I pray that some better days are heading your way.
# 8 May at 5:51 pm
It can be a very stressful time for all concerned, but hang in there, things hopefully, will only get better for you all.
Great to hear that Aria is enjoying her exercises & preschool.
Thankyou once again for your updates on how things are going.
We hope you have a lovely mothers day .Thinking of you all.
# 8 May at 6:51 pm
Hi there, it is very normal to be feeling all these emotions, part of the grief process. Just try to take a bit more time out for yourself, do some nice things to nuture yourself. Aria will get lots of care from many different people.
# 8 May at 6:54 pm
So sorry to hear about the bad day. When my son was in the hospital, we had to deal with the same, we weren’t even there a week though. But, it seems that on our side we are trying to make things as “homey” as possible and on their side they are “just doing their job” and feel put out. I’m sure every parent in every room of the hospital is asking for peace and they have lost their compassion in a sense because it’s just a job to them a lot of times, especially the cleaners and techs. So, I will be praying specifically that everyone that comes in contact with your family and Aria develops their compassion for you and your family a little more, because it’s so sad that health care workers have lost it. On another note, I am curious if you and Aria ever got all the postcards that me and my friends sent Aria? We went them to the hospital and I do hope that they gave them to you. There should have been around 20-25 of them.
Pamela – druideye
# 8 May at 7:00 pm
That’s what happens when people loose the concept of “universe”, (I should know, as my beautiful daughter Anita can testify). Some people need to be reminded that the “universe” is currently centring around Aria, and not them, when they enter her room. Hang in there kiddo! You can put anybody in their place with a smile of your face and they won’t take offence! Keep strong!
# 8 May at 8:12 pm
Oh Honey! Well it had to happen – for you to have one of “those” days – the ones where your stress and nerves have just had too much to cope with and combined with staff who just don’t “get it” when a child needs her peace and quiet. I really really understand this. My nerves used to be on high alert every day with me watching the door to try and catch nurses/cleaners/doctors/blood labs/toy library/visitors/play specialists etc before they banged into our room when Lara was sleeping. I was terrified to go to the loo/take a food break/get food etc while Lara slept in case someone would wake her and ruin her day. I found so many nurses were great and then you would get the thick ones who had no idea. A sign with “SHHH Aria is sleeping” would be a simple solution but be warned some people think this doesn’t mean them (often doctors) and I’m sure you know the nurses who will come and take temps and bp regardless so maybe you can head them off.
How is a child supposed to rest and recover when they are being woken every few minutes for things that can wait? My mum used to get very angry with people! 🙂 All I can say is that it won’t be like this every day. Hang in there you awesome mum!
# 8 May at 9:16 pm
Dearest Anita, all the team are there trying to help Aria, but YOU and HAMISH are the TEAM LEADERS when it comes to Aria’s care – you know her the best and know what’s best for her….. may you know strength as you take your rightful position! But blimmen frustrating when others don’t get it…and I guess each one of us/them have our bad days too….may you know grace for the thick ones (!), grace when others are having bad days, strength to persevere until your questions are truly answered and moments or refreshment amongst the constant constant!. I so get it….. may you get some time this mothers day to marvel at God giving you Aria and Asher to guide and love in this world…. Much love my friend. X
# 8 May at 10:52 pm
We are praying that there will be some happy unforgettable moments on Mothers day, and send you a big hug Anita.
# 9 May at 1:10 am
Oh Anita, I’m sorry you have had a bad day. I hope tomorrow is better with staff who are more sympathetic. Praying that you have a great Mother’s day on Sunday and that Aria gets plenty of sleep.
Judy.
# 9 May at 2:53 am
Thank you for your honesty Anita. It makes your blog so much more real. It is my hope that you will continue to write what you feel and how it is for you – the good and the bad. You are an amazingly tough lady doing a fantastic job in an extremely difficult situation. Be compassionate with yourself. It is normal and natural to have some really rough times. I have had very long hospitalisations myself and know how challenging Drs rounds can be. Remember it is your right to ask as many questions as you want, whenever you want. Don’t let them intimidate you into silence. Aria is your precious child and you have a right to know. You are all in my thoughts and prayers. Lisa
# 9 May at 3:13 am
From a nurses point of view, it is not much to ask of us to knock, or come back in an hour to do BPs. It sounds like maybe you need to speak with the charge nurse, or similar, to try and work it out? Preface it with how much you appreciate their work (;-))but that it is really hard when it feels like there is so little that you can personally do for Miss A. I’m sure they are reasonable people!
And I know you are not trying to be annoying. But you are her Mum!! You do get to be in charge of Aria – the hospital doesn’t own her.
And I second the “Aria is sleeping” sign on the door!! The cleaning can wait, the BPs can be delayed, and YOU get to be heard. Sending you strength, cos I know you need it.
Ali xoxo
# 9 May at 3:47 am
Hi,
I watch your journey every day, and I just want to say that you have a hard job that you do extraordinarily well. You have your voice but you are Aria’s voice too. She deserves to be heard and treated with respect, especially when she’s sleeping. Remind people of that if necessary. Get them to treat her like a wee queen!
Brendan