Monday, March 30, 2009


All the days seem to go by in a blur. Sometimes I don't even remember its the weekend. I'm sure that if the other kids weren't at school, I probably wouldn't even notice what day it was.

Josh hasn't had any more problems with his feeds, thankfully, although Liz mentioned that shed read on some forums the possibility of intolerance (Lactose for example) perhaps being the cause. Our paediatric Doctor who we spoke with today seems to think that would be highly unlikely, and you'd only find a patient suddenly intolerant if they had had some gastroenteritis problem, or if they were babies. It is something to keep in mind however.

The last few nights with Josh have also been good; although somehow, he tends to end up in a wet patch from his nappy (if its been a few hours since his last change) because he somehow wees up, and the tabbed area of his nappies aren't absorbent. A bigger nappy doesn't help. Any ideas?

Yesterday we took the 3 kids to the Starlight room, and there was a magic show on, and . The magician was great - he took my ten dollars, Kayla wrote down the serial number, and he made the same note appear in the middle of a grapefruit! Some other tricks he did were great too! I think Josh loved the flashing lights in there!

A little later, two guys showed us some different musical instruments and we all had a jamming session. Kane was too shy to even look up, let alone beat a drum or shake a maracca! Josh's eyes were definitely "clearer" with all the sounds.

We had a nurse come by today to explain the PEG procedure happening Thursday, as well as the care aspect of it. Everyone keeps saying how easy it is as far as the actually feeding and maintenance of it; its like having your ears pierced - its hurts for a bit, you bathe it, and later, once its healed, you could take your earrings out, and after a while, the hole would start to close up. The incision for the PEG is much the same; it heals quite quickly, doesn't bleed or anything, and starts to close after an hour!

Along with the PEG procedure, they are also doing a fundoplication; this is where they wrap the stomach around the esophagus to stop reflux. Sometimes they can do a "loose" wrap, so Josh could still relieve air (burp), or a "tight" wrap, where the air would have to be released by opening the button on his tummy. Hmmm. All this is pretty much done by keyhole surgery, and he will be in ICU for a few days afterwards.

There was an article in the Sunday Telegraph yesterday with John, Josh and myself; when they did the interview last Thursday, Kyle and Jackie O were originally supposed to be in the photo (from what we understood) so I was not prepared to be in the pic myself!

Anhyow, the main message we wanted to share is that drownings can happen at anytime, even when youre there.

That message has at least reached one person, as the comment left on a previous posts reads "...Every person with a child and a backyard pool should read your blog. My eyes do not move from my kids in the pool now."

Saturday, March 28, 2009

Off Again. On Again.

Joshys feeds finally reached the 22ml mark around 7.30pm last night and he had no problems - until lat this arvo. When the kids and I turned up just after 6pm, we came in via the playground, and noticed John and Josh weren't out there, as Id expected (since the weather was lovely). I knew something was wrong. Josh had vomited twice, and his feeds were switched off. Again. They resumed the feeds a few hours later at 11ml, and slowly increased them over the course of the night.

My brother and his new fiance, both of whom I hadnt seen for more than 3 years, returned from San Francisco and Canada respectively on Wednesday, and stopped by last night. They came bearing gifts for us from Peru, which is one of the places they visited on their backpacking expedition before returning to Oz. Joey has a lovely (bright!) yellow blanket to look at (for now). I haven't been more pleased to see anyone in such a long time.

Friday, March 27, 2009

End of the week

Josh had his long line (PICC) put in on Wednesday afternoon, and when I returned to the hospital in the evening, he'd not long been back, and was still a little sleepy. The procedure normally takes around 15 to 30 minutes, and sometimes can be done in a patients room if the environment is sterile enough, but for Josh, it took over an hour.

The idea is to give him the nutrients he needs through this long line, as well as feeding him formula through the TP, but gradually increase the amount he receives through the TP and lessen the amount through the long line (whew!). This morning, he was up to 22ml per hour through his TP, which is the volume he has been tolerating anyhow, and it was increased to 24ml at 8.30am. 15 minutes later, he started vomitting! His feeds were turned off until the Doctors decided what to do... it always seems to reach 22ml when theres a problem. A few hours later it was decided to start the TP feeds again at 15ml, and gradually, over the rest of today and night, reach 22ml again, and then keep the feeds at 22ml until his PEG operation.

This operation is happening on the 2nd April (brought forward from the 6th). Again, we've been told, because of the condition Josh is in, it's quite risky, and can normally take around 3 to 4 hours. If his PICC placement was anything to go by, I hope it doesn't go too much longer than expected.

We had a visit from Liz today. She is lovely, and a resource of information. There are things we do for Josh of course, like singing, and reading, talking, walks, etc etc, but she showed us other things to do to stimulate Josh and also gave suggestions on many different things like disco balls for with lights, and maracas, and play mats, and using satin for smooth and a loofah for rough etc. The kinds of thing where once you hear it you think "Oh yeh! Why didn't I think of that?" We also think we need to be a tad more pushy requesting items for Josh like a different chair to the one he's in for example. Its too cumbersome to push around.

The OT showed me some "basic" items that we may be given to use for when Josh comes home, including a couple of shower chairs, and we trialled one from a company called Leckey. And, it was yellow! Joshys favourite colour! We soon found out its perks and things that weren't so great, but its good to be able to get an idea of these things before going home.

We still have a steady stream of visitors, including another visit from one of our fav nurses from PICU, who visits from time to time, which is very sweet.

It's Bandage Bear week this week at the hospital, and Wednesday night, Kayla meekly stood next to the bear himself, while Sara Groen from channel 7 read the weather. John was down in Joshy's room at the time, but they saw Kayla on the tele! :-)

A couple of times now, during Joshy's physio session in the afternoon (when I'm not there), Joey has been placed on his tummy. Yesterday, John said Josh was sooo relaxed, he was like jelly. So much so, he slept until 8.30pm!' It was either due to that, or the Baclofen; probably a little of both.

I also finally bought myself a book light, so that late at night, when I read, I don't have to use the bathroom light to see what I'm reading!

We found out today through our Social Worker that one of the services that can be provided is a massage for John and myself! Imagine that? It is available on Fridays apparently, so next Friday, I'm there!

Bought Josh some watermelon flavoured lip gloss from The Bodyshop; we'll just place a smidge on his lips. If they had a tomato sauce flavour, I'm sure that would get a reaction!

Tuesday, March 24, 2009

Meeting #3

Meeting number three was today; smaller room, and not quite as many people as previously. Around 14 people including John and myself.

Main topic was what to do about Joeys intolerance to NG and TP feeds. A gastrostomy was discussed, but there is something else that can be tried until then; a PICC. In my understanding, its like a thin long rubber tube placed into an artery either up the arm, or down through the neck, til it sits near the heart. Nutrients (and other things like antibiotics etc that may be required) go directly through here, are basically "picked up" by the heart, and dispersed throughout the body.

(Yesterday Josh had a cannula in his right arm removed because it was starting to leak (it had been there at least 9 days) and a new one was placed in his left hand near his thumb. Today that blocked, so it was removed, which was another reason for the decision regarding the PICC.)

That procedure is being done tomorrow (hopefully morning) sometime - one of the surgeons came and saw me tonight regarding the op. It is actually a fairly straight forward procedure normally, but like anything, its not without its risks.

John will be in (to the hospital) later than usual tomorrow because a rehabilitation person will be assessing the home and suggesting modifications and equipment etc.

This afternoon I left at 4pm. and returned 6.15pm, so not much done at home.

Monday, March 23, 2009


Saturday and into Sunday morning were uneventful, which actually is not a bad thing. Joshy's antibiotics for his two infections were stopped, and a new drug given to help stop the secretions from his stomach. John played some home video of Josh on the laptop, and that was really hard for me to watch; I had to leave for a while and had a good cry.

Saturday night, I um-ed and ah-ed, but decided to have an "early night" and went to bed just after 10pm. I woke briefly whenever the nurses suctioned Josh (only a few times), and then got up at 7.30.

Yesterday, John and the kids didn't end up coming in to the hospital at all, because Kane had a temperature, which got as high as 39.9, along with a sore throat and tummy. John took Kane (along with the other 3 kids) off to the Doctors, who prescribed antibiotics, but we're not sure what the "problem" is. It was certainly a looong day, and the only visitor we received was Poppy, because the rest of the family had been out at our nephews 1st birthday. I, with help from the nurse of course, still managed to get Josh showered, and out for a walk. It was gorgeous weather yesterday.

Last night, I got up around 1am a few times, and then around 5am...

I missed seeing my kids, and giving them a hug. Also, Paris went to her first High School camp this morning, and doesn't return until Wednesday.

The lovely Marie offered to look after Kane this morning, so John came in to see Josh, and I picked up Kane around lunch time, but he seems quite well. Nutella sandwiches do that to you. :)

We have another group meeting with the whole team tomorrow; the focus will be on a gastrostomy. Josh still is not tolerating large amounts of formula, and has been on 19 mls per hour for a day or two. The rest of his fluids and nutrients he receives intravenously.

Joshy's physio sessions have been decreased to two sessions a day (the percussion and vibration), so we'll see how he copes with that.

The younger kids have another session with the Play Therapist this afternoon, so I'll have only been home 3 and a half hours in two days...

Friday, March 20, 2009


Over the last 2 months, we have experienced the kindness, support and generosity of our family and friends. I have closer relationships now with some people, made new friends, and will be eternally grateful for everyone being here for us.

I know people sometimes want to help, and don't know how, but the meals and food they provide us, the offers of looking after and collecting our other kids (and the list goes on), is by no means a small deal. Most importantly, I know I can turn to any one of them, and talk if I need to, and that is what really helps me.

The lovely Leesa wrote a letter (unbeknown to me) to Today FM, and it was decided they would make a feature segment of it... so last Friday (20th) morning, the Kyle and Jackie O Show broadcast our story and asked Sydney listeners to offer donations to our Jojo.

Never in my wildest dreams would I have imagined the response. The show ran about 20 minutes overtime, and they played snippets of it over the weekend.

The link to Joey's bit on the Today FM site is here.

Thank you Today FM, The Kyle and Jackie O Show, to Kyle Sandilands himself (for his own generous donation), Leesa, and the generous people of Sydney.

I know people don't do these things for the thanks in return or recognition, but truly, how amazing.

Thursday, March 19, 2009

Some of my ramblings

Of a night, to help Josh go to sleep, I dim all the lights except for a lamp, and play classical music. There's one piece I love called O mio babbino caro by Giacomo Puccini. Cant say I listen to classical an awful lot, but something about this piece touches me, and I feel the story in it.

When we first came to the hospital, I kept looking at the bigger picture; if Josh could just sit up and swallow, for example, that would be okay. Now, I have to keep reminding myself it's all about the baby steps. Now, I think if we can get Joshy well enough to get off the antibiotics, he wont need the IV, and I can pick him up more easily.

In such a horrible horrible situation, I look for things to be grateful for, such as thank goodness that our 4 other kids are at school, so they're cared for during the day. Some people groan when I mention cafeteria food; I don't mind it, and especially love my hash brown and mushrooms for breakky with a big cappuccino! I love that I can have fresh linen to sleep on every night, and fresh towels everyday. I'm grateful we are in our own room, and that I can sleep right beside Josh every night. And thank goodness we have access to such good medical services.

This is such an unreal situation to be in. I can not believe I'm here, right in the middle of every parents worst nightmare.

Sometimes I look at Josh and think, its not him; its another boy and my Joey is at home. But of course, i know it is him.

In the blink of an eye, our lives have changed forever.


Bit of running around and worry over the last few days; Josh keeps vomiting small amounts and we're not sure why. He is given a reflux medication but there's obviously a problem. Today, they did a contrast study of Joshy's insides. His TP tube was pulled back to his stomach, and then they put a dye down (the feeding tube). Periodic x-rays were taken to watch where the dye went - whether it continued down the digestion path, or if it came back up. It came back up. And he even aspirated some into his lungs. The tube couldn't be replaced back to where it was (as a TP), so they tried again later, and now is back as a transproloryic feed.

It has been assumed for a while now that eventually Jojo would get a peg bag for feeding, but it seems he will get that in the next few days.

In the interim, he still has to receive nourishment somehow, and he cant remain solely on IV fluids, so his feeds have been restarted... fingers crossed for no yucky stuff!

Josh had x-rays to ensure his hips, pelvis and spine are in line, which they are. We have decided to start him on a med called Baclofen to help relax his joints a little, so that he doesn't become so stiff we cant move him or even do his physio exercises.

Josh also had extensive tests to determine if he can hear. Again, he can (he has "normal" hearing), but, like his eyes, his brain may not be able to process those messages.

He also seems to have developed a slight twitch of his neck/head (since last night), particularly when his head is to the left, so we'll need to ask about that.

Monday, March 16, 2009


Josh slept through Saturday night without any problems! And no other incidents occurred throughout yesterday either.

This morning, I got up a few times between 5 and 5.45am to suction Josh, even though the nurses had just done it, but then he was peaceful til the physio came and woke him around 9am.

He had another x-ray to make sure that his feeding tube is still in the right place, so that his feeds can resume.

We had visits from the rehabilitation team, who suggested a couple of medications to help loosen the stiffness Josh now has in his joints, which in turn will enable us to move him easier, and maky also relieve any discomfort he may be feeling, but the down side of the meds is that it may sedate him slightly. We also had a visit from Jo and Michael, as well as the normal Doctors rounds, so it was a busy morning.

We gave him a shower and took Josh for a short walk outside, and then did a weight and height check, whereupon Josh vomited a little! Hmmm...

His feeds have been resumes, though so far, so good...

Sunday, March 15, 2009

It is!

Last night, The physio came to do Joshy's percussion and vibrations session (Percussion involves a rhythmical cupping action applied to the chest wall performed with a full cupped hand, tented fingers, or by using an infant resuscitation face mask (cupping). The technique of vibration can be performed manually by using the fingers to cause a fine shaking motion of the chest wall), and she suctioned lots of secretions. After speaking with her though, I now understand that Josh actually does have a chest infection. The sputum sample they took determines infections in the chest area, and that's where those two infections are. So, the Hyoscine patch that he wears behind an ear wont help those secretions; it's a different thing.

The Doctor (and a nurse) came from ICU and decided to leave Josh as he is, as there's nothing they can really do for vomiting there that couldn't be done where he is. I was fine with that.

The nurse that came in for Josh for the night must have been from an agency or something (not sure how it all works), as Ive never seen her before, and didn't seem familiar with the placement of things. The ICU nurse actually recommended a few things to her regarding Josh's care, particularly with suctioning. I was a little wary and concerned about leaving everything to her to begin with, and it took me a long while before I slept.

Saturday, March 14, 2009


NOTE: If you have found your way to this page directly from the Today FM site, please be aware that the entry below is NOT the most recent.

Please amend the web address so it reads, and not

(taken from my journal)

Got up quite early this morning (for me lately) - around 7.20am - to Josh gurgling, so now, at only 9pm, and after an eventful day, I am quite knackered.

John came in with the kids around 10am this morning, and we gave Josh an actual bath (rather than a shower) for the first time. We were a bit uncomfy with the whole thing, but a nurse helped us out, thankfully! Took Josh for a little walk, and then the kids and I left around 1.30pm to go to Poppy's place for his birthday get-together, and meanwhile, John took Josh to get a transpyloric tube put in place. Again.

It is felt that because of his little vomits, a TPT will help alleviate that.

It was nice to be at Poppy's with the rest of the family... I sure missed my Jojo though, and not seeing him play with his cousins. The birthday cake "thing" was really hard, and I had to force myself to stay in the room.

We went back to the hospital before 6pm for the first time in... lets just say: weeks! John is tired too, so he left soon after.

About 6.30pm, Josh's feeds were put back on, after the Doctor looked at the x-ray to determine that the TPT was in the right place. Ten minutes later, he coughed foamy stuff. And ten minutes later, the same. Ten minutes more, he coughed brown stuff, and ten minutes more he vomitted brown stuff. His feeds were stopped again, and the Doctor decided to do take another x-ray of his chest and TPT placement. Joshy's temperature was not high. Meanwhile, one of the Doctors told me that the sputum sample they took a couple of days ago has in fact grown two bacteria; staphyoccoculus and another one. Its not in his blood though, so his antibiotics have been changed again to a more specific one.

I left for a little while while they x-rayed and cleaned Josh up a little etc, and while I was gone, he had apparently vomitted a few more times. If he keeps vomitting, they are considering an ICU review. As it is right now, they are monitoring his heart rate and oxygen levels constantly, he has an oxygen mask, and when I am ready to sleep, a nurse will be assigned to just watch and care for Josh for the night. I feel better about that.

But no one is really sure why he is actually vomitting, especially since the TP was supposed to help that.

Friday, March 13, 2009

Friday the 13th

Luckily, today was quite a good day.

We were told Josh does not have a chest infection, and that his x-rays show no evidence of aspiration, and therefore he certainly doesn't have aspiration pneumonia. So that's great! He's still "gurgly" or rattly sounding when he breathes, but his patting and vibration sessions with the physio help that.

Doctors told John yesterday (and I was actually on the phone to John at the time, listening,) that we'd be looking at another 2 to 4 months before we are able to bring Josh home!!

We have talked about the possibility of day trips home, and other things to stimulate his senses more, and movement like tummy time for example, but Josh needs to be in a more stable condition first, and without things like an IV getting in the way!

We had the Occupational Therapist pop by again today. She has adjusted Joshy's hand splints a little, and we also spoke about having her come to assess our home for when Josh comes home. John and I are not in agreement about where Josh's room should be, and John's dad is also moving back in with us, but hopefully the rehab team will help our decision.

John has been trying to liaise with a Doctor from the UK that was first known to use the drug Zolpidem in coma-type patients and after a couple of initial emails, has not had much luck since. The Doctor that came by today seems to think that we still need to wait at least 6 months before trying this drug here, if and when the Hospital approve its use and fund it.

A Play Therapist took us to the Multi-sensory garden for our first time today. Lots of wind chimes, murals, tactile objects, and parts of their garden are in in their own little section with padded seats or swinging chairs etc. There is a sun awning, and a water feature, "creatures" in the garden etc. A nice place to play for a change.

Feeling a little down today...and quite tired.

Thursday, March 12, 2009

Thursday the 12th

After removing the IV that was in his arm yesterday morning, Josh's temperature rose quite high yesterday and he vomited again last night. This morning his temperature rose as high as 39.9 (on our digital thermometer) and over the course of the day, blood samples were taken, along with urine and sputum samples, and a chest x-ray was done as well. It is believed he may be aspirating in to his lungs - that is when he vomits, or coughs something up, some goes back down in to his lungs. The tests will determine that. He has been started again on a broad spectrum antibiotic; through an IV in to the back of his hand this time. If he does get what they called Aspiration Pneumonia, it is fixable, especially if Josh gets a gastronomy tube and a little procedure done which stops reflux and vomiting, which then lessens the likelihood of aspiration.

It was my 38th birthday today. And now, at the end of it, I'm so tired. Visitors, phone calls, text messages, computer messages, presents, dinner (my sis-in-law watched Josh for the 90 minutes I went to have Thai with my dad and Liz.), etc. My house looks like a florist! One of the cakes I got I had to share with the nurses! I was very spoilt - probably a little more so this year because of the circumstances, but much appreciated! Thanks, and hugs. xx

Wednesday, March 11, 2009

Thank you for the Thank you's!

The lovely Tianne suggested she make some thank you's for me... and what a perfect suggestion as a way of helping out! But these cards are simply too gorgeous to use! I need a Thank you for Tianne's Thank you's!

(Sorry they're a bit blurry! They look even better IRL!)


Josh had another great night (which in turn gives me a relatively good nights sleep - yay!)!! I even got up before 8.00am!

At Monday's meeting, a Doctor told us that a test to determine if Josh had vision had been organised for today. At first, the specialists didn't know if Josh was suitable, because his eyes weren't looking forward. They were going to postpone the test to the afternoon, when Josh is more "awake", but I'm glad they decided to try the test anyway.

Some blind people can still know when there is light and when it is dark. We could see this in Josh early on; going for walks outside in his push-lounge, he would open his eyes as we went through the shade of trees, and close them again coming out in to the sun. At night, I have to turn almost every light off except for the lamp before he will sleep, and in the morning, he "wakes" when I open all the blinds, and turn on the main light for the room. He showed that response with the opthamologists too.

They put a couple of probes and wires on Josh's head, like the ones in the EEG, which hooks up to both a kind of flashing light probe "thing" and a computer (my terminology obviously, not theres!). It was a little tricky, but it was determined that he can in fact see, which is great news! We just don't know if the messages he eyes send can be sent and processed by his brain.

That info, along with the hearing test (next week) will be put together and the Neurologist will discuss with us further.

Josh also has scarring on both eyes from "dry eye" which we were already aware of from his time in PICU. He doesnt close his eyes all the way when he blinks, and sometimes doesnt close them all the way when he's asleep, and so the eye doesnt get enough lubrication. There are also ulcers on the film of his eyes, which we need to treat aggressively before it causes bigger problems. The Doctor showed me how I need to tape Josh's eyes closed when he is asleep of a night so that the mositure is contained.

Meanwhile, we will continue to read, and show TV and DVD's, and toys etc, but will add some other things like black and white, with red images that are known to attract the eye. The quilt Tan made is perfect.

After the test, we went for our morning walk, but we had to come inside because of the rain. It was also my chance to have breakky! After a while, a young lady came over, and said she just had to say something to us, because she could see the love we have for josh and that it was nice to see, and to keep doing whatever it was we were doing. Awwww. I almost started bawling! Don't know who she was! She didnt look crazy... :-)

This afternoon, I tried to submit some forms to Centrelink... rather than complain, let me just say a big fat "grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!".

Tuesday, March 10, 2009


Sunday afternoon, Johns brother came and sat by Josh, while the rest of us went out... We went to Hungry Jacks first, but the weather turned chilly so we didn't stay too long, so we went home for a while. We were all quiet, and it just didn't feel right.

The physiotherapist has come a few times over the last few days, to give Josh a patting session. They place a towel over his chest, cup their hand, and pat over his lungs (basically) to loosen the phlegm and stuff there, so it's easier to suction. They're doing that a couple of times a day, because Josh sometimes sounds a noisy in the throat when he breathes, and when we suction, we have trouble getting "it". Afterwards, he breathes more quietly.

Monday morning, we met with the lovely Jo-ann and Michael Morris, who's son Samuel was in a near drowning a couple of years ago, and subsequently they founded the Samuel Morris Foundation. They are a down-to-earth couple, and I'm sure I'll be calling on them for advice or support over time.

Johns brother Rick, and my girlfriend Raelene, came to the hospital to be apart of the meeting with the Neurologist, and other Doctors and medical team involved in Joshy's care, which took place yesterday at 2.15pm.

There were more people than before, but it was less daunting. John and I were much clearer though on what we wanted to say. But! The team were pretty much already aware of what we want. We have decided to treat everything. If a decision ever needs to be made to restart Joey's heart, or put him on life support again, that's a different thing, and something we would try and address at the time if needed.

We talked about a gastronomy tube (a tube straight in through a "button" in the stomach), and also the steps needed to get Josh home. There's still a long way to go to even get to that stage; it seems that a 4 month stay in hospital is about average!

Josh has the beginnings of a chest infection in his right lung. Not all near drowning patients get chest infections. We were also reminded of the likely hood of recurrent chest infections becoming a problem.

We also re-discussed the sleeping medication Zolpidem, (also known as Stilnox). The Doctors, especially the Neurologist, was more encouraging regarding it's use, and offering his help to find out about possibly using it with Josh.

Overall, however, John and I were happy with the meeting, and we hardly said anything! :-)

On Monday afternoon when I was at home, John called me to say Josh had vomitted again. Returning to the hospital, I found Josh with an oxygen mask, which was a bit scary, but just a precaution I suppose. The physio came again later that night, and gave him a patting and vibrations session, and suctioned lots of "stuff", and afterwards he had a great sleep.

The last 2 nights, although Ive woken when the nurses come in, I haven't had to get up myself.

Joshy's temperature has not spiked at all and has been pretty stable, which is a good indication that the antibiotics are working. The course (of antibiotics) is due to finish tomorrow (Tuesday), and they will then remove the cannula. They'll only give them again if his temperature goes up for a period and they determine the infection needs further treatment.

Saturday, March 7, 2009


Kane went to a party yesterday afternoon, which was supposed to finish at 6.30pm. It ran over-time, so we didn't get to the hospital til 7.20pm.

I immediately noticed Josh looked a bit grey. John said he'd only been that way for a short time, otherwise he'd had a great afternoon.

It went from bad to yuk... his temperature climbed, lots of secretions and suctioning along with the vocal sounds he tends to make when he is uncomfortable. We kept putting cold compresses on his forehead and armpits, but they would get warm again very quickly.

The nurse gave Josh Panadol, and John and the kids left close to 8.30pm. It was 10pm before Josh went to sleep. I stayed up til 11.30, but couldn't really sleep, because images from "the day it happened" kept invading me. When I finally did sleep, I woke around 1am to Josh's noises, and I suctioned him, but every time I thought he'd finished, and I changed the hand towel under his head, he would cough again, and I'd have to do it all over. That went on for about 20 minutes. I did get a bit worried; I even sms'd John to let him know. He was given more Panadol, and settled down.

This morning, after more yuk, another sputum sample was taken. A little later it was ascertained that the infection is resistant to the antibiotics they've been treating him with, and had just started him on a new drug, which is to be given (still via IV) 4 times a day when I left.

We feel a bit more lost on the weekends, because there aren't as many staff, and certainly not as many Doctors.

Thursday, March 5, 2009

A new day

Sometimes - and I'm talking very generally - the information that we think we hear, or even that we ourselves give, is not understood or is misconstrued. That goes both ways. And while at times that can be frustrating, I think however that it is normal that we each individually relate better to certain people, more so than others. I have to take this moment though to say that all the staff we have had dealings with over the last few weeks - no matter how small - have been lovely, patient and as understanding as possible. Why does that all matter right now? The Doctors made certain things regarding Josh's ongoing care, much clearer today. And we feel more assured about things. Thank you.

Josh had a great night again last night, although he stayed "asleep" longer this morning, and looked quite comfy. He seems to be responding well to the antibiotics, because is temperature he stable, as are his other stats, and there are no rashes or obvious joint redness.

John and I also noticed Josh open his mouth wider twice, and move his tongue a few times. We're trying to ascertain if he's actually swallowing, because there are less secretions.

Here is Jojo in his jimjams (given by Carolyn). The giraffe (from Isaac) we like to put it in Joeys hand to not only keep his hands open a little, but because it looks like he's strangling it! :)

Wednesday, March 4, 2009

Again. Still.

I remember watching Oprah once, and she said something along the lines of "dont say or write anything that you would not say to someone in person". I searched for the actual quote just now, and found this: "I always write e-mails like they're going to appear in The New York Times," Oprah says. "Don't write anything that you don't want to see on the front page of a newspaper. That's how you have to handle it [gosspip], and that way you would not be writing those things." taken from here.

Writing this blog really helps me get my thoughts together, but is only my own interpretation of things at the time.

Josh had a great night last night. At least, that's what the nurses notes showed, and I hardly woke up, and certainly didn't hear Josh make any vocal noises for me to get up to. It's hard to know sometimes though whether there is a relation to his sounds, or just coincidence. * Sigh *.

Think I have a slight head cold though, so I shot off the the chemist when John arrived, for some meds. I don't normally take anything, rarely even a panadol, but this is a different situation!

Doctors told us today that Josh has staph. Again. Or still. It's Golden Staph - Staph-something-with-an-o. Not sure. Im not the medico. But I do know for sure they said it isnt Staphylococcus erpidermis, as its in his blood, not his skin. Whatever, they said it has to be treated aggressively. On the other hand, we apparently all have Staph to some degree, and everyone, like cold and flu germs (and all those other bugs) are carried around and transmitted easily. But becuase of the condition Josh is in, he is obviously more susceptible to infections.


Just spoke with John and the Doctors have told him (us) to look out for redness around his joints, aswell as stiffness there. Hmmm...

Tuesday, March 3, 2009


A specimen of Josh's sputum was taken last night, to test for infection, as well as some blood. We wont know for a few days what, if any, infection he has, but they're also trying to work out if there was another reason for his temperature spiking. They've started him on general antibiotics untill they know for sure.

Overnight, around 4.40am, I got up to some of Joshy's noises, and suctioned him. I buzzed the nurse to change the tape on his face that keeps his feeding tube from coming out his nose, and he kept making noises, so I was asking him, and looking around for what the problem could be. I noticed that there was a big wet patch under his nappy, and soon found out he'd made a bit of mess there. So as we tried to clean that up, he started to cough and vomit. (Luckily he was on his side). Meanwhile, he kept pooing. Graphic, I know. The nurse was very calm, while I tried to help, wide-eyed. She asked me to go and get the other nurse, and then suggested I go to the Parents Room (tea/coffee/lounge area) for a while. I got back to bed around 6am, but Josh sounded and looked very comfy. They stopped his feeds, and just resumed that at 1.30 today, after the Doctor's visit.

The Doctor is just generally more positive than the others. He clearly said he doesn't want to give false hope, but said you just never know. Brain injury is so complex and hard to work out. He cited examples of people, one in particular he's seen, where they've just "woken up" and asked for a cigarette! He is also more willing to read through the information we had obtained on the drug Zolpidem. He made it clear that the hospital may not approve of its use, but that did not mean it could not be tried later, under medical supervision. He also asked us not to use the term vegetative. "It's not very nice", he said.

I don't understand though how Josh looks awake, but probably isn't aware of anything. He's unconscious, with his eyes open. But at night, he goes to sleep. It's as plain as any normal 3 year old kid going to sleep. He closes his eyes, and drifts off.

Hard to get a hold on, for sure.

Hearing test is schedule for 17th March. Not sure when the Visual test is yet.

Had another meeting with the NUM today also. Quite happy with everyone, but I have previously requested that the night staff, or most likely the morning staff (since night staff finish around 7.30 and I dont normally get up till 8am), give me a kind of hand over. Basically, I just want them to update me on what has happened during the night, but also where things are up to. I dont know when he last got eye drops, or when he was repositioned last etc. Sometimes I dont even know which nurse is looking after Josh until 9 or 9.30am.

Trying to get John to leave Josh for an hour with either nursing staff, or a Ward Granny at least once a week, so we can have lunch and just chat. I think he'll manage that. Just. But Ive already told him that I'll be taking the other 4 kids out for a couple of hours each weekend, somewhere away from the hospital, and where they have my undevoted attention. It's up to him if he comes or not, but I dont think he's ready yet.

Monday, March 2, 2009

4 weeks today

How can time go so fast, yet feel like its dragging?

Last night I "advanced" and now know how to use a finer tube for suctioning, and know how to turn Joeys feeds on and off. :)

Josh didnt have a good night again - lots of suctioning.

The more I think about it, Im sure it must be because the patch was applied just before his shower on Saturday, and he also showered yesterday, and perhaps we got it too wet (since we washed his hair both times too). At least I hope its as simple as that, although the Palliative Team assure us that there is still room to increase how much of the patch he receives. He received a new 1/2 patch today, so we'll watch the amount of secretions for the next 2 days, and go from there.

I was hoping that I would be still there at the hospital when the main Doctor came by, but he hadnt when I left at 1.20pm.

We've seen Josh move / twist his left wrist twice over the last 2 days, which is a new thing (at least we havent seen that before).

His legs are still quite stiff, but I do his exercises every morning, and each evening, and they feel stiff, but less stiff. I know some of you reading this will know what I mean. :)

John and I wrote up a "routine" on Saturday, and I typed it out and printed it out. We know it will change on a regular basis, but it does really help us keep a track of where we're up to. Its just a simple thing for pretty much each hour, so for example:

8.00am - Arm splints off
- Eye drops
- Arm and leg exercises

9.00am - Eyedrops
- Sit upright
- Hamstring stretch

etc until about 11.00pm.

Theres some thing to do every hour, even if its just applying eyedrops, and we keep a seperate chart of everything we do (the nurses really only do his observations during the day; John and I do everything else now, just about). From about 11.00pm (til 8.00am), since the night staff shift starts at 10.30, I let the nurses take over while I sleep. Unless I wake for some reason and know that Josh needs help for something.

Sunday, March 1, 2009


When we first started Josh's Hyoscine patch that help dry secretions, a 1/4 patch was applied to be changed after 3 days. Then it was increased to 1/2 a patch every 3 days. That seemed to be working okay, especially for the first 2 days.

We spoke with the Palliative Care Team, and they suggested 3/4 patch every 3 days. I suggested we try 1/2 patch every 2 days, and that's what they are trying.

A new 1/2 patch was reapplied yesterday, but last night, and today, Josh's noises in his throat (like a rattle when you have a bad cold) are quite bad, and he had a number of big coughs that required suctioning, and once they even needed to remake the bed. Normally, he only requires a couple of suctions throughout the night. But Ive actually had to get up and suction a few times too in the wee hours.

That's concerning, but as of yesterday when the Doctor checked, his chest was clear (of possible infection). So we're not sure whats going on yet.

For a while, Josh was on transpyloric feeds (through nose bypassing stomach) into small intestine, but after having to have it repositioned 3 times (after a special scan determined it's place), it was decided to change it to nasogastric intubation (through nose straight into stomach). That change was done Wednesday night (I think?), and one of the good things with that is that his formula mixes with the normal stomach fluids. He is still on reflux medication just in case though.


Kayla went for a swim in the neighbours pool today - the first time in a month. I felt ill, but I know the neighbours were watching her (and all the other kids in there), and that I cant pass on my fears to the kids. When I went over for a minute, it somehow wasn't so bad to watch - perhaps because it was a different pool. We had been looking for Kane's floaties so he could swim too, but after no luck, decided to ring John in case he knew where they were (which he didn't). I could hear a noises in the background, a child's voice. I asked who that was, and John said it was Josh. I was shocked. It sounded like a normal kind of whimper / sigh. John reckons Jo is having a bit of a hard time breathing. It sounds like he needs suctioning all the time, but when John does it, nothing much comes out...

Kane remembered that the floaties may be at Nanny and Poppy's; the first weekend we were at the hospital, they stayed there, and I thought it would be okay if they swam in their pool, but then I changed my mind. Then, poor Kane, once we worked this out, and I told him he could sit on the edge and shoot his water pistol, he walked out the front, and everyone was coming out of the neighbours yard, finished with swimming!
Copyright 2009 Joshua