Quilts!

One of my closest girlfriends Tania has made a quilt for each of my kids, presenting it to them at around their Christenings when they were babies. She got a bit side-tracked with Josh's, because she started a course and was studying very hard, plus being a normal busy mum with 2 kids right in to their swimming, and helping out with school etc. But today, Josh got his quilt, and, like the others, it's gorgeous also!



There are also a lovely bunch of ladies who make quilts, and donate them to the hospital to then pass on to severely or chronically ill children, and their siblings. The project is called Quilts for Keeps.

So, I tried to choose a quilt for each of the 5 kiddies. Not an easy task!

For Kayla, Kane and Josh, I chose quilts with the same sort of theme, called "Eye Spy". There are squares with different prints on them, and you can have fun looking for different pictures.

What a lovely thing!

Different Doctor, different opinion.

One of the head consultants told us that another Doctor, with many more years experience than herself, would be taking over for the next week or two. They rotate being in charge apparently. We met him this morning, and John and I liked him immediately. A no-nonsense kind of guy, dry, but cracks a joke before you've realised it. His thoughts are totally different to those we've experienced by most others. He believes that all basic needs should be met. There is no question. So, if a child needs suctioning, then suction. If they get an infection, then treat with antibiotics. He thinks that only extra-ordinary circumstances need to be re-checked. Such as other problems happening while he is on antibiotics, or needing further intubation, for example. John has always thought that if Josh got an infection (for example), that it should be treated. In the meeting last week however, the Doctor and Neurosurgeon made it perfectly clear that their recommendation is to not treat a chest infection. So that was confusing. And makes me feel guilty that I even considered not treating one.

I'm quite sure that this Doctor is on, when our next meeting takes place. I certainly hope so.

Other health professionals...

Thursday and today have been filled with visits from the Physiotherapist (PT), Occupational Therapist (OT), and even a Play Therapist.

The PT here tends to work with mostly the bottom half; from the hips down to the toes. They move and exercise the body and improve mobility. The OT tend to mostly work on the top half of the body and are trained to assist people to overcome various limitations in order to live more independent lives, working with whatever mobility a person does have. They've been showing us exercises to do to stretch Jojo's muscles, and how to massage properly. They've also both had special "splints" (like a moulded kind of cast) made up for each arm and leg.

The splints work off the same principle; to stop the muscle shortening. So, the arm splints are kept on for around 12 hours over night. Josh (or most patients with Josh's damage) tend to curl and keep their fingers closed up. The fingers and hand can also twist a little. Almost from day one of being in the hospital, we have kept something in each of Joey's hands - a soft toy, a plastic toy etc. This splint simply requires that he lay his hand out over the moulded plastic (he wears a stocking thing so his hands don't sweat and stick), and it velcro-straps in so that his fingers and thumb are a bit flatter. Much like holding on to say the arm of a lounge.

The aim of the foot splint is to keep the foot at 90 degrees. That normally stays on for 2 hours , and then comes off for two hours, but when the PT comes back on Monday, we'll have to get her to have another look, because they've been giving Josh pressure sores in places, so we've stopped using them for now.

They look a bit like this:

The Play Therapists role is to get kids talking about any problems or issues through playing. The lady that came to speak to Kayla and Kane suggested Playdoh as her first play item to get them talking, and John and I knew that that would work! They LOVE Playdoh. She was with them for about an hour, just in the courtyard outside our room. Afterwards, she told us they they had opened up quite well to her, but that they seemed very stable, and seemed to understand much of what was going on, which she credits to us talking about things with them without trying to complicate things. We were happy that Kayla's concern of "daddy blowing into Josh" (which we didn't know she had a question about) was voiced, and now she understands that what daddy was doing was actually a good thing. At one point during her chat with us, Kane came bursting in to the room crying, and the Play Therapist said "Oh! Josh just opened his eyes at that!", but we didn't see it, because we were looking at Kane. Today, she came and told us (whether it was because we mentioned it to a nurse or something), someone apparently took her aside and questioned her about it, and asked her if she stood by what she said. She told us what she told them; that she's no Doctor but she knows what she saw.

A cuddle

I woke around 5.30am to some different noises of Josh. When I checked him, he was in a mad sweat all over, and making more sounds. Hard to explain what those sounds are... like a sigh, but with a vocal sound. One of the reasons I reckoned he was so hot is because normally he just has a sheet over him, but they'd also put a blankie from home over that. Imagine laying there among a sheet-covered plastic-y mattress, and plastic-y pillows! So I buzzed the nurses, and we left off the blankie, and took off his jammie top. It was a bit scary!

They also removed the tube that goes directly into his tummy, through his nose, that takes away "normal" stomach secretions. The doctors in the meeting yesterday thought this nasogastric tube was unnecessary, but one of the things that could happen is vomiting, which is sometimes due to no other contents into his tummy, such as his formula. (His formula goes directly into his small intestine).

Josh has three different meds for his eyes now (since Monday evening). Every 2 or so hours, theres something to put in them. But we cant really see any improvement; his eyes still look bloodshot at the bottom, so we'll ask them to check again.

I laid in bed with Josh this morning, while waiting for the shower room to become available. The bed of course adjusts up and down etc, so I propped my elbows and head with pillows, and Josh laid on my lap, for about 40 minutes. Just as we were getting ready to lay him back on the bed, and timing! as the nurse came in, Josh coughed, and vomited (not a huge amount luckily!)

Later, the NUM apparently wanted to meet with us (she was at the meeting yesterday). She was concerned we'd asked about perhaps moving Josh to a Neuro ward, and went on to explain the benefits of being in the ward he is in. One of those being the relationships that are built with the nurses who look after Josh, and the rapport and trust formed, which Id only just mentioned to John this very morning. Anyhow, we had a good talk, and it was a very important thing to happen, because it was reassuring.

Before we knew it, it was 1pm, and Josh was whisked off for his EEG. My Aunty had also made an unexpected visit, but I had to leave!

John rang an hour or so ago. They still hadn't given Josh a shower, and he vomited twice more on his way to have the EEG.

Again, I must thank everyone who sends gifts and messages, provides us with meals, and boxes of food, and offers services to us. It helps so much!

The Meeting

The nurse called us into the meeting with the "team" caring for Josh around 2.30pm. Whenever I get nervous, I get sweaty armpits, and feel cold and shiver. Gross, but not as bad as it sounds! John and I were almost giggling with nerves on the way to the meeting room.

There were around 12 people there - Neurologist, nurses, Palliative Care and other Doctors.

Ah! Doctors! Such doom and gloom! Well, sort of. I mean, its better than them giving us false hope, but they don't like to paint a pretty picture either. I get it! I get it! They advise us based on past experiences and the information on hand.

They reiterated that his outlook does not look promising. The problem we have with anything they say is that no one is 100% certain. Or even, say, 60% certain of anything.

They think he wont walk, or even sit up. Its unlikely he will ever speak. Their gut-feeling is that he cant see or hear, although that may improve. No absolutes. And that's harder to deal with than anything. Not knowing. Uncertainty. How can John and I make such important decisions when they don't even know?

The Neuro is also concerned that Joshy's eye tend to roll back. He said that that was unusual. Josh has moments when he "looks" straight, but the Doctor thinks perhaps the part of his brain, at the back of the head, is damaged, and may not show up on then MRI.

They are certain that a chest infection is imminent. John and I cant decide what is best. John is thinking more about treating it, and subsequent infections, just with antibiotics, and hopefully see some movement or communication improvements along the way. The doctors advised that of course they could treat Josh with antibiotics for infections for the rest of his life, but 2 likely scenarios of this is that antibiotics aren't always enough, and that there will come a point in time where his body will be too weak to fight chest infections any longer, antibiotics or not.

We asked about moving Josh to a more brain-injury specific ward, and mentioned some treatments we'd read or heard about, such as hyperbaric oxygen therapy, or the drug Zolpidem. It was explained to us why these weren't suitable, and no other treatments could be recommended.

They have agreed to do another EEG and MRI and to compare them with the last ones done.

I absolutely now loathe the word "purposeful". I will never hear it again without remembering this time at the hospital. They all refer to anything Josh does, especially mobility-wise, as whether it is purposeful or not. Is he moving for a reason, like to scratch, or to touch my face? etc. Purposeful. Ick.

John certainly felt deflated afterwards, but its what we expected to hear really.

They almost all apologised for the confrontational atmosphere, but as with anything, the first time is always hardest. Another meeting is scheduled for 2 weeks, and getting together with them all wont be as bad. Importantly, I did not feel belittled or inferior, and felt confident knowing that whatever John and I decide will be supported by them.

Joshys trip outside!

The 2IC organised a wheely recliner padded chair, so we could lay/sit Josh up in it and take him outside! While it was nerve-racking getting it organised, it wasnt nearly so bad as a shower. We took along a portable suction unit (for suctioning the secretions if needed) and I wheeled along his formula tubes (he gets fed through a thin tube through his nose, straight in to his small instestine). Wow! We actually had smiles on our faces! And we felt free, if just for 20 minutes!

We walked along under the jacarandas, and Joey would close his eyes when in full sun, and open them again in the shade.

I took a couple of photos, but not sure I want to share them really.

Head movement

(taken from my journal)

Sitting here with Josy, watching the Oscars.

We've noticed today that whenever I run my fingers through Joey's hair or at certain times when I stroke his face, his whole head moves to the side, and sometimes his shoulders lift. Actually I did notice it last night too when I was putting special gauze on his eyes when he was asleep. (We use these patches (Bactigras) to keep his eyes closed to help keep the moisture in).

I also read in the notes from the lady who sent us that mail, something about Hypersensitivity (and there's also Hyposensitivity). Maybe this is what Josh has?

The nurse also just came in, and Josh moved his head. She agreed she's not seen him do that before.

Josh

Thought I'd share a pic of Josh for those of you who dont know him.

This was taken at Movie World 19th January 2009. That's big bro Kane with him. Josh loves anything to do with cars!






This one is so typical of Josh... kicking back. Enjoying life. Taken 20th January 2009.

To clarify

After speaking with someone just now, I just thought I would clarify a couple of things regarding possible "decisions".

The doctors, especially the Palliative Team, have made it clear that they're neither prolonging or shortening Joshy's life. So Josh is (or "the Powers That Be") the one deciding and fighting his way through this and staying here with us. He is such a strong boy; he has always been known for his independence and determination.

If something happens along the way regarding Joshy's health, thats what Im referring to in terms of how much to help him get through it. The doctors can advise, but that choice is up to us.

If Jojo suddenly stops breathing, the question is do we resucitate? The doctors advise not to, as that's further time without oxygen so further brain damage. But if he gets an infection, say, in his chest, we then need to decide whether to treat or not.

I hope that makes things a little clearer.

Hope

(taken from my journal)

Sitting here just now, the nurse bought me mail. Mail? For us here at the hospital? I thought it must of been our invoice for the nights we stayed in the hostel while Josh was in ICU, at $30 per night. But inside the envelope was a folder, which a letter and info from a lady we've spoken to briefly. Her daughter had a near-drowning experience a few years ago - we "found" this family, through one of our daughters friends. And here she is, sending us, people she doesnt know, love and support. I know now, I cant give up!

Shower time!

(taken from my journal)

They've taken Josh for a shower... I got a bit teary and had to leave John with the nurses and Josh a few times. He looks so fragile, and the whole process looks so awkward. John and I talked about having baths with Josh, and assisting each other with that, when he's home. Then we wondered if the whole "water" thing is upsetting to Josh. Does it bring back memories for him?

Evening

(taken from my journal)

A doctor came by this eveing to check Joshys eyes. He'd heard from the nurses that John noticed Josh's pupils were dilated again for a short time, and seemed to follow first the laptop, and then a toy helicopter. Doctor said "you never know; miracles do happen.". The eye team should be taking a look at his eyes tomorrow.

Starbucks has become my late-night friend. I get my Starbuck thermos filled with a Grande Signature Hot Choc, and sometimes a slice or cake of some sort. The kilo's I know I lost in the first 2 weeks of Josh here in hospital, Im sure to have put back on in this past week!

Nothing new...

today.

I went to bed quite early last night - about 10.30. But then I got up about 1am when I heard Josh "cough" and called the nurse in to suction him. Then I helped her change and reposition him. Didn't take me long to go back to sleep, but I actually had spooky nightmares, for the first time in a loooong time, and later, I also dreamt of my Nan and Pop. At the end of that dream, my Pop had me enclosed in his arm as we walking along the top of a beautiful mountain. It wasn't until I awoke that I remembered my Pop hasn't been with us since last May. Perhaps he was trying to comfort me?

I then got up at 7.50am, when John called. No sleeping-in at hospital either! :)

A doctor came by, and I enquired about the redness at the bottom of Josh's eyes, especially his right eye. I thought it was from the eye drops we give him and maybe we needed to try a new bottle because Josh actually moves his head after each drop (like maybe they were stinging?), but John thought possibly because of the Hyoscine patch because that is behind his right ear. The doctor reckons its simply because he doesn't close his eyes all the way when asleep, and also doesn't blink much. We need to take more care putting special gauze on his eyes when he is asleep, closing the eyes properly to keep the moisture in.

The main doctor, the one that John spoke to on the phone yesterday, also came by today (while I was in the shower). She had come in to see another patient even though she wasn't due until tomorrow.Although Josh hasn't been suctioned down his throat for some days, she got the nurse to go down because she wanted to see if he coughed. Josh didn't. That's not good. You imagine sticking say your fingers down your throat; you're bound to gag at least. :(

Josh's pupils remain large most of the time, even when there's plenty of light. Apparently that's related to his brain damage. But last night John swears his pupils were small, and it was like he was following - very slowly - a toy John held in front of his eyes. It didn't happen for me when I tried.

John and I have different views on the future for Josh. We both agree that we need to consider his quality of life. And we agree that we just dont know how much he does or doesnt do is okay, or if our decisions are the right ones. But John still hangs on to more hope than I do. I am more at ease with letting Josh go, if things turn out that way, because I know that how he is now, and even if he improved a little, is only a shadow, a mere faint shadow, of his former self. John talks about signs, and things happening for a reason, which I would of agreed with once. But how do you explain something as tragic as this even happening? What is the reason for that? Maybe it's kinder to let him go, if he chooses, rather than hang on to him like a trophy. Remember, that all of what I write is my own take on things, so John may see some things I write about differently.

I think sometimes, as people, we try to rationalise things as a way of coping. But there is no rationale for this. We also both agree that its really hard working out the difference between being realistic, and wishful thinking.

I love Jojo so much too, which is why I feel this way, and have never waivered.

Q&A

Q: Is Josh in a coma?

A: No, not now. He was in an induced coma for the first few days, but after day 3 (or around 72 hours) they started weaning him off all the meds that kept him in that state. He was free to move about etc and show us how much or how little damage there was. The only med he has been on that may affect how responsive he is is morphine, but he was only on that for such a short time really. So no, he isn't in a coma. It just shows the extent of his brain damage. He doesn't move, or swallow etc, because he cant.

Q: Shouldn't the dressing on his pressure sore on his head be changed daily?

A: According the the medical staff, it should be changed every 3 to 10 days. The problem was that we weren't exactly sure when it was put on (around day 4 or 5), but thought that it seemed to have been on a long time and no one had even spoken of changing the dressing (like a band aid really) until we asked.

Saturday

Today feels like it's dragging. Its 5.13 and it feels like I've been awake a week.

The main Doctor looking after Josh came around this morning, and said she needed to ask the question about what to do in the highly likely probability that Josh will develop a chest infection. To treat or not to treat?

John bought the kids in around 10am, and they were pretty good playing out in the enclosed playground, and dealing with the unpredictable weather. Sunny one minny, raining the next.

John later spoke to that Doctor on the phone, and had a good chat with her.

John asked some of his family, and I asked my dad about their thoughts on things. I gleaned some other d&m stuff from my dad today which was very poignant, relating to when my sister died of cot death when I was five.

John helped Joey have a shower while I took the kids for lunch. All they do is eat!! Kayla loves the cafeteria because she can choose individual ingredients and I let her have them. For example, today she chose pumpkin, rice and peas. The other day I allowed her to have spaghetti on its own, without the bolognese. She thought that was fab!

While Josh had his shower, they changed the dressing on his pressure sore which is directly at the back of his head. He got this from laying in that one spot for 3 days, on the cooling mat. It still looks icky, but they assure us its fine.

John stayed at the hospital, and the rest of us left to pick up Paris from a friends, and then came home to do stuff. I ended up treating the 4 kids hair for lice. Again. Will treat again in a couple of weeks, but I think I'll have to take them to the Doctors, because this has been going on since before Christmas. We treat, comb, wash - arrrggh!

Joey's breath is "smawley" (that was Kane's way of saying smelly for those of you who are uneducated), because he constantly has the secretions building up in his mouth. I havent suctioned today, but I help John, or hang about when the nurses do it. But John and I have been making a good team when it comes to turning Joshy to his other side and repositioning him, and mouthwash, excercising, rubbing in the sorbolene ect.

Kayla made Josh a mobile yesterday, just in case he can see. Lots of yellow; Joey's fav colour. Or Lel-lo, as he would say.

Kane and Kayla are working on more stuff now to change the stuff on the mobile every few days.
Thank you to everyone who sends and leaves us lovely messages, and for those helping us out with meals. We are truly appreciative.

What?

Last night, two of our friends came in. It was really hard for me to see a strong man get visibly emotional looking at Josh. Here I was trying to placate him! :)

We had the doctors through this morning, and I mentioned about the pressure sore on the back of Joshy's head, and how the patch had not been replaced, to my knowledge, since they put it on at about day 4 or 5 (its now day 21). The seemed a bit surprised by that and are looking in to it. As they do.

Then the Palliative Care Team stopped by to remind us that they'll be stopping the morphine later today, after weaning him off the last day or so. They also said that they will be recommending the Hyoscine patch be increased from a quarter to half, as Joshy's secretions didn't lessen overnight, and in fact had to be suctioned more regularly. We were also talking about keeping the kids involved, and I mentioned I was going to get them to make a really easy mobile for Josh to look at; something that can be changed regularly. They said it was a good idea, but then a thought struck me, s I asked the question: Can he even see or hear? Their answer floored me: We think it to be highly unlikely. So what? He can only feel our touch? And that's all he "is"? I vaguely remember the neurologist saying that this was a possibility days ago, but no one had actually said whether Josh could or couldn't see or hear. Ive asked for tests or something, that can determine this. I need to know.

Not long after, we spoke with a Social Worker. This was quite weird in a way, because while I'm sure she has heard many stories, I (or we) still have a good 10 years life experience on her. Admittedly, I felt better after talking.

We gave Joshy a wash / shower on the special shower bed, and that was quite different and also a step by step process. It looked uncomfy and seemd to take too long (time wise).

I also actually watched the nurse do suctioning today, so that was a first for me, since normally I leave the room, or ocassionally, hold on to Joshy's leg and keep my head down.

Long nights...

(taken from my journal)

Last night was one of the longest nighs ever. Not a brilliant sleep for me.

11.30am.

Johns brother came about 8pm, and John and I went to our room. We talked for a bit, and John ended up laying with me, and we fell asleep. Johns brother rang our room around 3am, ready to go home, so John went up to be with Josh.

John popped home this morning briefly. He said he found it hard to be there (at home).

2.10pm

They took Josh around 12.50pm for his MRI. Ive spent the time since on my own. Had a big lunch 'cause I figure I probably wont eat dinner tonight, but I feel ill. Im quite weepy today too. Melie and Paris's dad came for about an hour today and bought Josh a pack of cool Matchbox cars. A girl from school even sms'd me well-wishes. The preschool gave Joey a gorgeous cuddly tiger, and colourin-in thing, and card. Im so glad there is so much support for us. We couldnt do this on our own.

John told me he told Josh he was sorry this morning. Sorry for letting him down. I told John that I dont blame him for anything. Im not angry with him.

I am scared though. How will John and I know if we're making the right decisions? What if we dont agree?

The first night here in hospital, I held one of Joshy's bublebee (yellow) cars all night while I slept, and I didnt let go. Ive been holding on to it again since 1pm.

Our nurse today is usually a bit more smiley. John and I arent sure what it is, but something is different. Maybe she is just tired? Or had a bad weekend? Or maybe its about Josh?

John and I were talking about things happening for a reason, and those things supposedly making you stronger. What the hell is the reason for this? Why would I need to be any stronger? John feels maybe he is being punished. For what? It's not Joeys fault. He's an angel. The best kid you could want.

9.50pm

The unofficial report was a long time coming, but basically the MRI scan shows worse damage than first thought. We have some really tough choices to make over the coming weeks, and perhaps I'll write about it as we go along.

7th February

(taken from my journal)

2.25am

The weather has been crazy outside of a day; high 30's and even into 40 degrees! there are something like 38 bushfire's around, and here in the ward we can even smell the smoke, most likely from the Lane Cove fires.

I had about 2 1/2 hours sleep tonight, and John woke me for his turn to sleep. I think I'll stay another hour or so and go sleep some more.

Joey was low on Potassium after his last blood gas checks, so the nurse has just given him some more. Earlier today when they had to do the same thing, he "woke", and all this green gunk from his belly came up through his nose. So Ive been watching and waiting from this dose of Potassium, but he seems fine.

3.05am

Id no sooner written that (above), when Joey woke up. It wasn't for long though. He didn't really look at me, although he did seem to try to squeeze my hand when I asked. Little tears come out of his eyes, and my heart breaks. The nurses moved Josh again, and cleaned his air tube, and suctioned. I cried a fair bit, which I haven't done since, oh, yesterday! I just want to kiss him all over as if that will make him okay. I don't think of things like "Whats life going to be like now?". Its all about Josh. How is life for him? The nurse looking after Josh tried to help me... but I just really want to bawl, and pick Josh up and kiss him all over!

Am I strong enough to give Josh everything he needs? What about my other gorgeous kids? God I love them, and miss them!

Everything is so hard, because Im known to be strong, but I just want to crack. Im trying to be strong for John too because Im worried about him, but I just want to get lost in his embrace. But I know he cant give me that right now. Maybe he wont ever be able to again.

7 February

(taken from my journal)

3.13am

Since giving Joey the potassium, he is breathing more on his own again... It reached as high as 11 breaths out of 25 (so the machine took 14 breaths for him). This number is still very low. They cant take his respirator out on that figure. It also isn't good news if he cant breathe on his own.

For I-don't-know-what-reason, here are his stats from the main monitor. There are 6 waves.

HR 136
Pulse 135
BP 113/52 (72)
CVP (10)
Resp 26
CO2 39
Pleth 97
Temp 37.6

While I was out, John overheard some nurses and doctors talking, and they apparently said something about over-dosing or double-dosing. John asked me to ask about it, but we both asked when the Doctor came by, and he fobbed it off saying that if anything like that happened, they would tell us as its "open policy". Hmmm.

So its been more than 24 hours since Joshy first opened his eyes, but there has been no other significant change, and no new firsts yet.

I guess the other thing I'm scared about is "losing it" in front of the kids. Not holding together, and again, cracking over something small. I'm hoping to be a more patient, loving and calmer mummy, but I guess things will take some juggling.

I hate hearing John repeat the story of how this happened. I hate the word drown, or drowning. I see images in my minds eye, of Josh in the water (which I didn't actually see), and then I see him lying at Johns knees.

Beginnings...

(taken from my journal)

So, today is the day we should see the beginning of what Josh may be like as he recovers from his fall in to the pool Monday night. I've just left his room in PICU and his temp is 33.7. They had to maintain it at a temp between 33 and 34 for around 72 hours, which is believed to help the brain recover. Over the next few hours, they will slowly allow his body temp to get back to normal. It's something like 1 degree every 3 hours. They are also weaning him off his meds such as pain relief, a med that stops him shivering, etc etc. which will allow him to wake up slowly out of his induced coma. and he'll be free to move or cough or show signs of pain etc. They don't expect him to wake until tomorrow-ish, and should be able to remove his respirator then. He is breathing mostly on his own (65%) which is fab, but he has an infection in his chest which at the moment they think is staph. There are degrees or forms of staph, and the doctors have told us that this is nothing to worry about. Yesterday they started Josh on a general antibiotic for it, but of course today, now that they now what it is, he's on specific antibiotics.

I am so nervous about the next few days, I feel sick all the time, but then I think about Josh and how he'd be feeling, and so mine is nothing.

Everyone, and I mean everyone, has been terrific. My friends are great friends. My fam is great. And even Johns sisters and sis-in-law have come to visit which is brilliant. My work has apparently said to take off as much time as I need, and that my job is still there when I'm ready. A relieving manager brought 2 washing baskets full of food and goodies to our home. Johns work has said to stay away, as has some of our family and friends employers (that is, that they can have time of work for a while)!

Newspapers

(from The Telegraph)

http://www.news.com.au/dailytelegraph/story/0,22049,25000965-5001021,00.html

(from ABC)

http://www.abc.net.au/news/stories/2009/02/03/2480585.htm