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

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!)

Vision

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!!".

Busy!

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.

Resistant

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.

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! :)

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.

3.45pm

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

Icky

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.

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.

Gurgly...

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.

3.30pm.

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!