Wednesday, February 22

Up and downs of the last few months...

What a journey we have been on in the last few months!
I'm really not sure if at the time I last posted Holly had her PEG insertion. Anyway, in September 2011 she had her PEG inserted & her hips released. She recovered really well from that. 
It was in September that I also started blending food for her to go down the PEG. Since then she has been absolutely amazing, she has thrived. She put on a stack of weight, she doesn't vomit anymore, she is just amazing.
That was until about a month ago.
We woke up one Monday morning to the sound of her having a seizure. We ran into her room & found that she was in a big sweat. I took her out of the bed to change her nappy & cool her off, while I left L to change the sheets. It wasn't until I had her on the change table that I noticed her face was all puffy & swollen.
We took her into the emergency department & they think it was probably a spider bite or something. So they sent us home with some antibiotics and antihistamines & we were to follow up with the paediatrician in a week.
By Tuesday afternoon, her breathing had become quite laboured & she was very very grumpy. On Tuesday night I wasn't comfortable putting her to bed, so L & I went back to the hospital to have her checked over again. Turns out her oxygen levels were low, so they put her on oxygen & she was admitted. Thursday was Australia Day & there wasn't a great deal of experienced staff around, but by then I was worried about her. They had to keep increasing her oxygen levels & they put her on ventilated oxygen. She had only been awake for about 2 hours in total from Wednesday to Friday.
On Friday afternoon our regular paediatrician was doing rounds so came past to see us. I explained to him my concerns & so he re-ordered her chest x-rays and tested her carbon dioxide levels. They were sitting at about 89 (below 60 is good, under 40 is better). So the pediatrician contacted the pediatric transport team to come & collect her to take her to Monash. We got to Monash at about 1am on Saturday morning - by then I figured I'd had about 8 hours sleep in the past 50 odd hours, so I left L with Holly & went home for a few hours sleep. L got her on the ward at about 4am! 
I came back in at about 9ish, just in time for the doctors rounds (thankfully!) - I had sent L home for some sleep. So, the professor in charge that morning took a look at her & was quite alarmed at her level of responsiveness & consciousness. They took her carbon dioxide levels again & they were in the high 90's, so they packed us up & took us straight to the ICU.
Thankfully my sister had joined me by then because it was very scary seeing about 14 different doctors & nurses working on her to try to stabilise her. I was doing my best to hold it together. I'm so glad my sister was there. I ended up calling L back in - he'd only been at home for about 30mins, but the doctors were worried about Holly & thought it would be a good idea if L was with us.
Holly on Bi PAP in the ICU
By the time L got there, Holly was reasonably stable on the Bi PAP machine & she continued to just sleep for most of Saturday. They had to keep suctioning her & every time they did that, they had to take the mask off & she would de-sat. As the afternoon progressed she continued to stabilise enough for L& I to head for home for some sleep. One of the beautiful things about ICU is that the nursing ratio is one-to-one so we were pretty safe in the knowledge that she was getting the best care with her very own nurse & if anything was going to happen, they would ring us to come back in.
5am Sunday morning the phone rings - its the ICU - she isn't doing very well & we needed to get back in there ASAP.
That drive was horrendous. It was all slow motion, I was willing the car to just go faster, but I didn't want to have to be there.
When we got there, there was a number of staff around her bed, all looking quite concerned. The registrar came over to us & said that she isn't doing very well, she had about 2-3 hours left to live & that we should ring our family to come in & say their goodbyes. That is a moment in time that will be etched into my memory. Having to make the phone calls - that was terrible. Not knowing what to say & people just crying for us.
The family had come in & we were all pretty emotional. While the family was there, the main doctor called us into a family meeting - we were in the process of talking about organ donation and how things would go when she did leave us so we weren't surprised that they wanted to talk to us. They took us into a room & explained that even in the last hour she had picked up a little and although she was still tentative, she wasn't in a position of having only a few hours to live - relief! I came out of the meeting again in a state of shock. Its like I'd almost resound to the fact that she was going to go & now they were saying that she may not!
L slept in the bed next to her - we weren't leaving her!
L & I stayed in the hospital that night. Its very unusual for parents to stay in the ICU there, but we weren't going anywhere! Not when she was that unwell & likely to crash quickly. That whole night & all the next day she kept de-sating. Setting all the alarms off & having doctors rush over. Very stressful to say the least.
Monday came & we met with the main doctor 'Felix', he was lovely. He spent a fair bit of time with us & went through everything with us & explained every scenario & every possibility & every consequence to every option that we had. He answered all our questions & was really fantastic with us. He was going to give her till Wednesday on Bi PAP  & then take the machine off to see if she would cope.
Tuesday morning when my Dad came to visit she opened her eyes! For the first time in a week, she opened her eyes - everyone was so happy & relieved & crying!
Given her progress on Tuesday, Felix was really happy to take her off the machine on Wednesday & see how she handled it. She was great for a while, but would de-sat after a while & need to go back on. Felix then said we'd wait until Friday to see how she would go on CPAP instead of Bi PAP. She handled that great - she was slowly but surely getting better & better. We figured out that she was de-sating when she was asleep or needed suction. So whenever it looked like she was about to go to sleep we'd pop her back on the machine & we got to a stage where she was off it more than she was on it. On Friday she was showing great improvement but Felix just wanted to keep an eye on her, so he said they'd make their decision on Monday about whether she could go back to the ward. When I got there on Monday morning, Holly was already sitting up in the tumbleform, & was gooing & gahing & carrying on like she'd not been sick at all!!! She was so beautiful sitting up there - it was like she was saying -"what's all the fuss about guys?!"
We went back up to the ward on Monday morning - just in time for the same professor that put us in the ICU 8 days previous to do his rounds! He was impressed with her recovery, so much so that he left it up to us as to whether we would take her home or not. I wasn't one to argue with the man, so we packed up pretty quickly & left. I was bringing my baby girl home. It was such a surreal & funny feeling. I was so relieved & grateful that I had her in the car, yet so much more aware of the precarious nature of her life. I think I'd lost sight of that a bit, I think I'd become a little complacent about it all. She had been in such good health & she was doing so well, I just had gotten used to the fact that she was going to be with us for a long time.I am seeing her in a totally new light, I am so grateful for the time I have with her & I'm spending more time cuddling & holding her. I think I've come to realise that I really do need to cherish her while she is here - not that I didn't before, I think its just woken me up again.
The next story to tell is about her hips - we've come home from the hospital & her hip is dislocated! So now, we are off to have an operation hopefully on Monday. I'll write a bit about that tomorrow I hope.....

Wednesday, September 7

Since June? Really?

Hard to think its been THAT long!
So much has happened!
She is doing AWESOME!
We've been in and out of hospital a few times, she's had a PEG put in & her hips operated on.
The PEG is fantastic!
I've started her on a "blenderised food" diet - where I blitz everything in our new thermomix. I'm loving it & she's been in really good moods & is doing 'normal' poos!

As a general rule, we are ace! I'm coping with everything so much better, I'm really comfortable with the way things are & she is healthy & happy - can't ask for much more than that!

Wednesday, June 1

New website

I just had to put this out there - I'm not ready to make it really well known yet - hence not on my facebook yet, but I've done us up a website to help us raise money for the new car I'm dreaming of.

You can't google it yet, but if you type  into address the bar it comes up!
I'm a bit excited about it all!

Wednesday, April 27

A car?!

I went and had a look at my dream car today.
Its awesome, the Kia Grand Carnival at Automobility. It has a fantastic (light weight) ramp at the back where we'd wheel Holly in, she sits in the middle of the second row of seats. This car has got a third row that you pull down as required - for when/if we ever have more kids. Its just exactly what we need. 
Ahh to dream!
The reality is that its going to cost about $70,000. I have no idea how we are ever going to get that much money. Time to start thinking seriously about fundraising.

Tuesday, April 26

Some weeks are really tough...

Sometimes you just fall in a hole and its hard to get out of. This is one of those weeks. Everything is a drain. Feeding, getting meds organised, crying, seizures, more crying, more seizures, more meds. It feels like you just go around and around and around. There really isn't any light. She is at an age where she should be walking, I should be teaching her to talk, to feed herself and explore new things. She should be able to run around in the back yard with the dog, play with the other kids and do all the things that "normal" kids do. Sometimes being in this never ending cycle of feeding, crying, change a nappy and seizures is shit. I have this overwhelming sense of guilt. I should be putting her in her chair more often, I should be putting her arm and leg braces on more often, I should put her in her corner chair more often, I should feed her orally more often so she doesn't lose the ability to do so, I should give her more time. But seriously, I am emotionally drained right now. There is only so many hours in the day that one person can 'goo' and 'ga' at a baby so that she smiles. Don't get me wrong, I love her smiles and I do appreciate that she does smile, but there is only so much time in a day that one person can spend getting the child to smile.
I think that's one of the hard reality differences. 'Normal' people spend a few months 'gooing' and 'gaing' to their child, their child learns to smile, learns to interact with people, then they move on, they have new things that amuse them, new things to learn and by the age of about 6-12 months they are out exploring new and different things. Nothing changes with Holly. Day in day out, its the same. Its just ridiculous monotony.
It sounds like I'm really unappreciative of what I have. I try each day to be grateful that I have her at all. Some days, and some weeks its just really really tough.

Sunday, April 17

Lazy sunday afternoon

Its a very lazy day today. I had a sleep in, got up and had a hot cross bun for breaky. We got dressed, dropped Holly off at my dad's and went out to the valley. We had a poke around the farmers market at Yering station, then went to the dairy for a yummy cheese platter, then picked up some strawberries before heading back to pick Holly up. L and Holly are now asleep on the couch.
We've not had a very eventfull few weeks since the last post really - just plodding along.
We got rid of Holly's green wheel chair that we've had for about 6 months. It was good while we had it, but we don't need it any more and she can't sit in it for the moment while she has her saw hip so its good that its gone from the house. I'm really pleased that the physio came and picked it up - I'm equally pleased that we don't ever have to see that particular physio again! I'd forgotted how much she annoyed me until she was in the house again. I'm very pleased we don't have to deal with her.
No other dramas really!

Saturday, April 2

Sometimes its the little things...

I knew it had been a while, but I didn't realise its been a month.
Holly's obviously out of hospital by now! She was in for a total of 10 days. She got out, was out for a week, then I've been in. I was in for an overnight stay, then came home for two nights and went back in for another three nights. All's good now, but not the point of my post.

We were just watching a movie and mid way through the two of us were bawling our eyes out. It was a really good movie. Its just really hard watching when the baby on the movie learns to say "mumma". Holly will never say it. Sometimes its the little things that are the hardest.