Archive | January, 2012


30 Jan

I am sorry to report that things are not a whole lot better with Tilda. And we still do not have any news regarding the PEG surgery. I am feeling all manner of things so bear with me as I try and gather my thoughts into some kind of comprehensive post.

The main thing that is troubling me at the moment is Tilda’s loss of general Tildaness. The thing that I feared most in the world. She is not particularly happy, nor is she inclined to do the things that she once loved – like swimming or trampolining. The only thing that she wants to do is watch Dora. I would do anything in the world to make Tilda happy and if she wants to to watch hours upon hours of Dora a day, then I will do it but I hate it. I find it so unbearably sad. I am desperately hoping that either the PEG surgery or the return to school, with all its stimulation, will revive a bit of the Tilda of old – enough for me to feel that she is living some semblance of a life. This is not a life at the moment and I am angry, and heartbroken, that this disease, which will take her completely, has already taken too much.

I see sparks. In the mornings, when she wakes, she smiles and reaches for a cuddle. She will put up with me trying to take her outside to the pool and splash about for a few minutes before whimpering to go back inside. Riding in the car, listening to The Wiggles stills brings a smile to her face.

We returned to the scene of Wish Day on Friday, with friends who were down from Sydney who weren’t able to make it for the day itself. There were sparks there, as we went round the roller-coaster. But, her energy levels are very low and we only stayed 1/2 an hour before it became clear that she wasn’t coping.

This ever constant grieving is ever constant. And although I hate to even put it down in words, there are some days when I wish that it was all over and that I could let my grieving pour out of me like a torrent. At the moment, there is a wall which says that I must focus on the moments, focus on the day to day, focus on the now. But the now is shitty. Shitty, shitty, shitty. I want my Tilda back.


Watching videos of her, from even just a year ago is simultaneously heartbreaking and wonderful. I am so glad I have them.

I gather strength from my friends and family, from the support we receive. All we can do is forge on. Hope that tomorrow will be better. Hope that I will have the strength to face what is ahead.




A mixed holiday

23 Jan

I returned last night from 10 days down at Anglesea, back to internet access, emailing and Facebook! Back to phoning hospitals, doctors and dieticians. The holiday was mixed. It was wonderful to spend time with my family and to be by the beach. Tilda had a marvellous time in the water, letting the waves crash over her legs.

However, we have seen a real change in her and not for the better.  It is hard to know whether it is the fault of the tube or whether it is this iniquitous disease showing itself again. Whatever the reason, Matilda has not been particularly happy, with bursts of lamb-like whimpering where we desperately try and figure out what is wrong. The analogy of having a new-born is completely apt again. Does she need a change of nappy? Time for a feed? Tired? Or, quite possible, is the wrong episode of Dora playing? I find this whimpering incredibly hard to deal with as it seems so far from my cheery, happy Tilda.

So I came back to Melbourne full of fortitude. Time for some calls. After being on hold to the RCH for over 1/2 an hour, I called our incredibly wonderful neurologist who works at the Austin. She happens to know the person doing the PEG surgery and after some to-ing and fro-ing, it looks like we may have progress on speeding it up. I am waiting to hear back, hopefully by tomorrow afternoon that we will be able to get her seen at the Cabrini, much earlier than the 2nd March. I asked if it was possible that this regression that we have seen could be because of the nasogastric tube and although it is not an absolute certainty, there is real hope that once the PEG is in, we will see a return to my Tilda of good cheer.

Thank you once again to all friends and family who have been so supportive. NO WAY could I do this without you.

I will post again once I have more news!


Quick Positive Update

10 Jan

You lovely people must be doing something – your vibes to the universe / prayers / good thoughts etc have resulted in a MUCH better day for Tilda. And me! Perhaps she had a little bug that has now passed but she has tolerated breakfast and lunch feeds extremely well with no whimpering and her good cheer has returned although energy levels are still low. We will test her oral eating tonight with a stop at KFC for popcorn chicken. If she refuses this, I think we know that things have changed. We have already agreed with the dietitian that we will increase her calories through the tube so that she will be getting the majority of her needs from it. I am happy with this plan.

In PEG news, I called the hospital today and we are booked in for Friday, 2nd March. I will admit that I burst into tears at this and was reassured that we are the top of the list for any cancellations. I do feel better now that things seemed to have settled down though so things don’t seem quite as dire as they did.

I also realised that some of the whimpering was in reaction to a particular episode of Maisy that she was watching! We are sticking to Dora today and her smiles are back.


Thank you all. xooxox


9 Jan

It has not been an easy few days. Unfortunately our smiling cheery Tilda has become a little bit miserable. Which in turn makes us pretty miserable. It is difficult because she can’t tell us what the problem is. All we know is that there has been a lot of whimpering and general unhappiness. She has also stopped eating orally altogether which wasn’t the plan at all. The tube feeding only makes up half the calories that she needs each day so we are finding ourselves back where we started, with her not actually getting enough food.

We ended up in the emergency room last night. Matilda hasn’t been herself since we got discharged on Thursday and after her lunchtime feed yesterday (at about 3, my timings are completely out of whack), she was in a lot of distress and very upset. Thankfully it was the day the nice nurses from Hospital at Home come to visit. She recommended that we take her into emergency just to get her checked out.

Of course, as soon as we got in the car, Matilda perked up considerably and by the time we got to the hospital, you wouldn’t have known that she was ever miserable. Little bugger.


We were promptly sent home only to give her dinner which prompted more whimpering. Another call to the wonderful nurses who were a bit baffled by this stage. The advice was to dilute the formula with some water, give her some panadol and talk to the dietician in the morning.

Who was also a bit baffled. We have tried and will continue to try a few different things to see if there is improvement but I tell you, I am very close to pulling the tube out myself. I will be in touch with our paediatrician tomorrow to find out when this PEG surgery will be and try and push for an earlier date.

I would like to say a huge thank you to my very lovely family who have been a wonderful support. Thank god for them and for all the people who have sent through kind messages of support over the last few days.

Onwards and upwards!

First day at home

7 Jan

Coming home on Thursday night, laden down with equipment and instructions, I felt like we were bringing home a newborn again. Completely out of my depth and scared as hell.

We’ve had a few hiccups, like any good first time parents. Before each feed or administering of medication, we need to check whether the tube is still in the right place. To do that, we have to draw some fluid out with a syringe and test it’s ph levels. If it is above 5, it means it may not be in the right place so we have to give some water, wait a little bit, walk Tilda around and then try again.

Our first attempt at home, the ph level was 7. We called the truly wonderful nurses who talked us through the next steps. We called back when the next attempt was still at 7. They sent round the extremely lovely Elaine. Elaine does it and the ph level comes out a perfect 3. How do nurses do that?? She was very kind and understanding. We felt a little silly. But so glad we have these wonderful people to call.
Thursday night, Tilda had a fever. We gave her panadol (very handy through the tube) and she went back to sleep. All day yesterday though she was pretty lethargic and not her usual cheery self. We had a visit from the nurse from Hospital at Home who will come out to see her every second day and were advised to wait it out and if she develops another fever then we should take her back to hospital. Thankfully, there has been no signs of any further fevers so I think she is ok.
We haven’t quite got a good rhythm yet with this new set up. We are still feeding her orally so meals now take twice as long and it seems like just as we get done with one meal, it is time to start preparing the next. Because of that, we have also been a bit housebound and Tilda is watching lots of tv. I am hoping that we will get into the swing of it all soon and that our days can be filled with things other than tube feeding.


Home and tubed

5 Jan

Well. Overall, that wasn’t as bad as I thought it was going to be. The insertion of the tube definitely WAS as bad as I thought it would be – Matilda cried and thrashed and had to be held down and then they had to do it again because it was in the wrong position so there was more crying and thrashing. Awful.

However, once it was in, things went very smoothly. She tolerated the feeds going in, the meds going in and doesn’t seem to have a burning desire to yank the tube out so all in all things are good!

Being able to deliver her meds without any fuss and bother is actually pretty great. And watching nutrition go into her is even better. I am feeling way more positive about this now that it is done. We have the support of the hospital who will be coming out to see us every couple of days to make sure everything is going well. We DO NOT have to insert the tube ourselves if it falls out, we can either wait til the RCH team next come out or take her into emergency where they can be the ones to traumatise her! Another positive is that all the equipment, the tubes, the pump, the tape, the bottles and even her formula is all provided at no cost to us. Which is wonderful. I can also happily report that the chaos of the new hospital downstairs is not reflected in the new wards upstairs. Everything looks great, the parent beds are much more comfortable than the old hospital and we even had a nice view of parklands!

I would still prefer the PEG to the nasal gastric tube – just seeing her with a tube is fairly heartbreaking. But I think I will be able to deal with this short-term. I am yet to find out when the surgery is booked for but hopefully not any longer that a couple of months. Other good news about the tube that I wasn’t sure about going in is that she will be able to swim and go to the beach, we will just need to make sure the tube is clamped and put on some waterproof tape.

The thing that we keep coming back to is that as long as Matilda is happy then we are ok. And coming home, listening to The Wiggles, even after having a tube put in, it seems that she is. 🙂


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