Last week.. Hospital again.. Just pred.. and only for about 4 hours..
This week... listening to Tova is breathing a tiny bit unusual... in Canberra.. hoping NOT to see the inside of the ACT ER.
We are visiting my brother and his family. Nissim and Vicky are 'the same'. Same age, same interests, same language, same same.. They are a bunch of fun to watch together.
Last week!
Yesterday Yuval came home from work early.
I picked Tova up from school early.
We went to the head honcho ENT dude for an appointment that has been stressing me out for all of this year. I think I have been there 4-5 times and talked about ent stuffs, but put off this treatment each time.
So, yesterday, with Yuval, we prepared Tova by telling her this:
We are going to an ENT appointment. It isn't going to be nice. Actually it may make you cry. It won't hurt, but will feel uncomfortable. It will be quick. We will be with you the entire time, we won't leave you. Nothing bad is going to happen to you. But you may feel scared. We will be with you. The doctor is going to get a very thin tube with a camera attached to the end. He is going to put the camera on the tube down your nose and look at your throat. We won't leave you. We will hold you and sing to you.
Tova thought it was funny when I ran my finger along her nose, along her cheek and down her neck. And made me do that to myself too. She nodded that she understood.
Yuval and I thought that Tova would cry, cry, cry. Cry so loud that people across the world would hear her.
There is no sedation for this test. And actually, crying is helpful for the dr to see what he needs to see.
The point of this test was to see if there is scaring or damage anywhere that could possibly be causing these frequent visits to hospital and to see if there is damage to the vocal cords. If they found any scaring we were hoping that it could be fixed so that Tova stops getting so sick every couple of weeks. We are pretty sick of going to hospital all the time with a sick Tova. And also, we were hoping they would find a fixable reason why she doesn't talk with her voice.
Well.. first of all, after waiting for an hour or so on the waiting room (we were waiting to see a specific doctor and when he did arrive we were first in to see him). We went into the room and a very lovely nurse sat with Tova on her lap. She wrapped Tova in a sheet so that she couldn't move so much, VERY CLEVER! Tova didn't mind so much, it is kind of like after the bath, being wrapped in a towel!
So far so good.
Then the doctor slid the camera on the tube down one nostril.. Tova shut her eyes. A little tear appeared on her left eye. Just one.
Then he did the other nostril.
She made a few gaggy coughs because the tube is uncomfortable I imagine.
She didn't cry.
She is our hero!
Not because she didn't cry. But because she has been through more than anything I could have ever imagine anyone going through at any stage of their lives. For someone so small and frag she is the strongest person I have ever met.
Oh, and I mostly held it together during this procedure too. I did have to fight back tears, but those tears turned to pride! Yuval was strong too. We were both very interested in looking at the screen of inside Tova's nose and throat. It was amazing.
This little precious miracle child never ceases to amaze us. She is an honour to know.
Result: There is no damage down there. In a way it is a shame. We were kind of hoping for the dr to say "oh yes, here is the thing that I can fix. Once fixed she will talk and also stop going to hospital"... Oh well..
Thursday Night Tova was breathing very fast and very shallow. Her heart rate was through the roof, I don't know what it was at it's highest and I know I have seen it faster, but it wasn't good.
The ambos whisked her away quickly with the 02 mask on.
It was different to the usual breathing issues Tova has. She was all floppy and very distressed. Usually she is still quite happy and active with her croup episodes.
It is always scary and this was no exception.
We got to hospital and were put in one of the top bays (near the nurses station) but not directly opposite the nurses station. It is always better to be further away from the nurses.. the further away the 'healthier' the patient! We were still placed in one of the closest..
Unusually it was only 8pm - ish.
They, poked, prodded, x-rayed, weewee-sample-tested, looked in ears, mouth, all over her body.. Her 02 levels were around 92 at their worst.. after nurofen she started to relax, her fever went down and her breathing settled.
That was it! Nurofen! No pred, no adrenaline, just Nurofen!
We were home by midnight. They were going to keep us but respect my opinion as a frequent flyer and let us go home.
Since then she has been mostly fine.
She couldn't attend her school holiday program on Friday and just stayed home with me. We both went to the chiropractor and then did pretty much nothing for the rest of Friday.
I am very pleased that school holidays end today! Back to school tomorrow! We did find a great school holiday program last term holidays, so Tova attended that program again these hols too. The first day she was there was a bit unusual, they didn't feed her much really at all (maybe a couple of mouthfuls of puree fruit all day and that is it), they also managed to sunburn her and a foot ball hit her in the stomach.. So, after I had a talk with them about such odd occurrences, it didn't happen again.
She actually didn't attend too many days this time because she kept getting sick on the days she was enrolled there.. *sigh*. But other than the strange first day they are a fantastic school holiday program with lovely workers that really love Tova. When I pick her up I usually spend 10-15 mins listening to the workers and other kids telling me all about Tova's day. It is really lovely. The school holiday program is through the YMCA. They don't discriminate and are happy to help Tova with her extra needs (not sure what happened on the first day).
Tova has been given a place in a horse riding therapy program. Apparently this is very good for muscle tone! We shall see. Hopefully it will help her walk... The only issue with it is that it is only during the school term and during school hours. So she is going to have to miss school one morning a week. For however long..
Tova has actually been holding her balance when standing since about 2-3 weeks ago. It is amazing to see. Walking soon!!!! She would love to!
We also found and have been given a place in a therapy program in Adelaide. It is almost the same as the one we went to in Canada and actually the lady that runs it went to uni and shared an apartment with the lady that runs the program in Canada. So we are now just trying to get the funds sorted out for the 3 week intensive program in SA. Including accommodation it will cost about $10k.. It is fantastic that it is much, much closer than Canada and I am even thinking about driving there! So I will have my car with me.
It is also going to be fun to meet my neices that I haven't met yet. They live in South Aus. And also exciting to see the rest of that part of the family!
There is another therapy that we have heard about, stem cell therapy, but not the usual bone or umbilical type. This one is where they take Tova's blood do something stemcelly to and then put it back into Tova.. so not invasive! But yep, $150THOUSAND dollars.. innnnssaaannneee.. So, that one is off the table!
Happy 6th Birthday to the most beautiful Tova in our world! Nissim wrote Tova on her birthday card and Nissim in the 'from' bit. So cute!
Tova slept in until about 9.30am recovering/still being sick. We spent Thursday night in hospital from about 3-4am till close to mid day. Tova didn't sleep. I slept for about an hour when they moved us into short stay! I don't mind short stay so much, in comparison. And this time they didn't take forever to move us from the critical bay around to short stay, so that was good.
There were 3 adults in peads, it must have been a busy night in emergency, I've never seen that before.
It really bugs me that the Monash Children's doesn't have toilets child size or any portable seat for a little child to use the toilets, they don't have appropriate beds for children that can fall out of beds and are too old/big for cots, and the cots don't adjust their height anyway, so even if I did put Tova in a cot, she could climb out and fall quite a distance to the floor. They also don't have food appropriate for someone that doesn't chew. These are small things, but really strange. It means that I can't go to the toilet, as I can't leave Tova who doesn't sleep because drugged up on uppers, she would either fall out of the bed or climb out and crawl around on the revolting floor, she can't/ won't use the toilets because she will be scared to fall in.
I think the new city hospital has all those things, and they even have child minding for siblings if need be. I be they even have staff that sit with your child for a moment so mum/ dad can go to the toilet etc.. oh well. Monash is walking distance from our home, so it is convenient.
When the ambos came to the house in Thursday night/ Friday morning, they took one look and listen at Tova and said "um, I think we should just go NOW".. off we went.
When we were discharged Nissim came home as Grandpa, who usually has him on Friday's was sick. Poor Nissim. I was tired and stressed, Tova was sick and lethargic. So I dragged us off to the cinema to watch a big Tv rather than the small TV at home. We went to see Epic, fail! We left before the end. Nissim can't handle any loud noise and Tova had a head ache, so some of the loud noises made her cry. Oh, not to mention it is a B O R I N G movie even to them.
The other day I took Tova to Despicable Me 2! That was fantastic, we both loved it.
When Tova woke up this morning Nissim and I sang her happy birthday, she loved it. We opened all her Presents. Everything Little Mermaid! Her favorite. We still have to get her a few Despicable Me toys. She then spent the day being miserable and crying, resting and watching TV. What a let down of a birthday.
The grand mothers came over with a cake this afternoon. We all had cake for dinner.
I'm feeling pretty miserable, pretty sure that Nissim is feeling pretty misery guts too. We didn't have such a great day. Poor Tova.. BUT Happy birthday princess!
Princess Tova slept in until about 9.30am because she isn't well, but at least she is home.
