Hair! Beautiful Hair!

Joey's hair has not been cut during his stay in hospital. It had not been cut since the end of January. And so, as this pic shows, he was loooong over due for one!

It seems everyone has commented on his hair! "It's so long!" or "it's so beautiful!" Even the nurses would play with his hair! Perhaps I shoulda charged for a touch! :)

In this pic, you can also see his long eyelashes. (Kane has long lashes too). The cleaners would say "he is too beautiful to be a boy!"

During the last 3 months, he has also grown hairier legs! We're told that this is quite common after brain injuries. Hmmm...

So, the lovely Marie cut Joey's hair today, and ta-da!

Day one home!

Had grand plans to unpack some stuff, and do some reorganising, go grocery shopping and then be back in time to go to Joshy's opthamology (Eye Clinic) appointment at 1.15pm back at the Children's Hospital today. Lets just say we went to the appointment first, and shopping happened afterwards, and our night ran late!

The Opthamologist is happy with the lubrication of Joshy's eyes, so we pretty much are to continue doing what we're doing which is applying 2 types of eye drops / ointment every 3 or 4 hours. Josh has scarring (which we're aware of) caused from Dry Eye (most likely in the first few days of PICU) which is permanent, but does not affect his vision.

In this pic, its the white-ish marks below his pupils.



I did manage to sort through Joshy's clothes today, and threw most of them into the bag to give away. Most of them are just not suitable now because there are too many buttons, or they don't stretch etc. That was really tough. I also found it a bit hard giving Josh a feed for the first time in "public". I'm sitting there trying to look as if I knew what I was doing, but feeling as if the occupants of the waiting room were all watching us...

But on a good note, I can sing all of Skid-a-marink now without crying. A crack in my voice maybe, but no tears.

The outing must of really knocked him about, because when I got back from shopping at 5.30, he was asleep, and has remained that way!

Another day

Went to bed just after 9pm last night after letting the nurses know, but unfortunately, while Joey had an okay night, the little guy in the bed beside us decided to cry every few hours.

John came around 11am and Kayla, Kane and I chuffed off to Bear Cottage straight away (to gather the rest of our things).

Using the directions I'd scribbled from Thursday night following the ambulance, I got us to BC with only one small detour, in just over an hour.

Everyone was welcoming and lovely, and asked us to stay to lunch, which, of course we did! It took longer to chat with everyone than it did to finish packing our things! The kids also did not want to leave!

Tan and Ant and kids came this arvo and brought me a copy of Angela's Ashes (thanks also to Kerryn for sending me a copy :) ), the sequel 'Tis, flavoured lip balms (even lemonade!) and yummy choc hazelnut slice, which I shared with the nurses.

Hoping we get a better sleep tonight, although now it looks like Josh's bed is faulty, as it inflates and deflates when it shouldn't, and beeps at odd times.

Josh looks better today, but it is too cold to go outside.

Back in

Got down to the ward we were in previously around 3.15am. Very tired this morning, and Josh is sleepier too. Visits from lots of Doctors and other medical staff who have all said that Joshy's current infection is something that unfortunately will just happen most likely on a regular basis for Josh. I'd mentioned to one of the Doctors a treatment Id heard about for secretions called Hypertonic Saline, and that may be a possibility for Joey. At the moment he is receiving antibiotics through an IV.

John brought the kids in around 2.20pm, but they were all gone by 3pm.

I also had a lengthy meeting with our Social Worker in regards to support and services available.

Hmmm...

Bear Cottage

Josh and I took a ride in an ambo to Bear Cottage, Manly, and on arrival I was surprised to see that it looked nothing at all like I had imagined. I didn't exactly picture an old wood house encompassed by a verandah, but more of a sprawling, single level home. In actual fact, Bear Cottage is a cross between a hotel and a 2 storey modern home.

Bear Cottage is a relaxed place; even the nurses wear casual clothing. Lunch and dinner is prepared, and set out like a mini buffet everyday, and while the variety is great, it tasted even better.

This is the view from the balcony off the dining area.

We had our own "apartment" downstairs, with 4 kids in one room, and Josh, John and I in the other, as well as the dining / lounge, and a kitchen and bathroom.

The kids all settled quickly. A few days after we arrived, Paris discovered she actually goes to school with one of the kids who was there with her family. Kayla became the Chef's shadow, and Kane became the Play Therapists'.

Bear Cottage is a respite place for families. Most families use it as a "time-out" from constant care of their child, or to utilise nursing care while spending time with their other kids, for example. We used it as a stepping-stone from hospital to home. While our apartment was downstairs, Joshy's ""other room" was upstairs, along with a lounge/bed and another bathroom. We had Josh sleep in our room every night, except for part of the first night, and only had Josh looked after a handful of times.

We also had a visit from Liz, and met Ashleigh for the first time too. Liz showed us some exercises to try for Josh, and boy! didn't Josh protest with the loudest vocal sounds Ive heard since his accident!

I also even got a reflexology (foot) massage! Ahhhh! Bit weird having all the focus on my feet, but simply divine!

I took the kids to the Aquarium, took the three girls shopping with the Pumpkin Patch voucher and also chose clothes for Kane and Joey, and bought some other bits and pieces. Kayla Kane and I also saw Bedtime Stories at the movies.

Tuesday night I had to take Melie and Paris to their Nans because of rehearsals for their school musical which were being held all of Wednesday and Thursday. I drove straight there and back, but what should have been a 2 hour trip took me more than 3 hours! I had to buy a street directory (which obviously didn't help!), and added to that, it was night, raining, I had no E-Tag, and... no drivers license!

Id discovered a few hours earlier that it was missing, and I can picture in my head removing my license from my wallet, and that my organ donor card was stuck to it so I separated them. But I cant remember why I needed it, or where I was. I called security at the hospital, but my license had not been handed in. So Ive no idea of its whereabouts. Ive had to call the Crisis Hotline to report it missing, and now just need to get to the RTA...

Wednesday saw most Bear Cottage occupants enjoy a lovely breakky at Bavarian Bier Cafe (Manly), and then some people, including Josh and Kane, were spectators on a water taxi watching others of us - like John, Kayla and myself - Parasail! I was so proud of Kayla up there with us! The silence and peacefulness, while suspended in the sky, is amazing. One of the nicest things Ive done.

(pics to come)

And I was especially glad that Josh did so well. Afterwards, I took Joey for the 3rd part of his first "real" outing in 11 weeks; we walked around the Corso, and back up the long hill to the Cottage in time for lunch.

We also had a meeting with our Case Manager and Social Workers, to try and get some kind of care plan (a routine, or "who's" doing "what") for Josh, started.

My stay at Bear Cottage was relaxed, and it was fantastic to see the kids have so much fun without the stress. The ladies I met are such gorgeous people, and have been really helpful and supportive.

Since I have never had anyone in my life - let alone my own child - with the same needs as Josh, I am very open to suggestions on how to care for and manage him. I don't know any better, so why not listen to people with experience. yes, ultimately, Josh is my child, and I'll do what I think is right, but I also have to hand over some trust to others too.

One of the biggest issues evolving over the last few weeks, but especially during our stay at BC is "to suction or not to suction". Or rather, how much suctioning is too much? At BC I was shown or told other ways to deal with the secretions, or alternatives to sticking a yankauer or catheter in Joshy's mouth or down his throat. Things such as using mouth swabs, or using paper towel or a hand towel to wipe it away. The difference is knowing when a wipe is sufficient or a suction actually is required. The other thing brought to my attention is the actual portable suction unit we use for Joshy's secretions. I hadn't considered how it looks, or the actual act of suctioning in public. So, now Ive put the unit in a cute Susans enviro bag and hang it on the stroller. And sure, if we gotta suction, we gotta suction, but again, its about knowing the difference between having to, wiping it away, or waiting for Josh to cough it up. We've been told from the beginning, the more you suction, the more you create.

John and I had differences of opinion, and he didn't like BC, so he left.

Unfortunately, though we weren't due to leave until Sunday (10 days at the Cottage), on Thursday, Josh was sent to the Children's Hospital Westmead with a suspected chest infection!

The Wiggles!

Joshy had a visit from the lovely Jeff and Dorothy the Dinosaur of The Wiggles this morning!

We were given tickets to see an upcoming show, as well as a meet-and-greet, along with some toys, DVDs and other bits. I couldn't see any changes with Josh, as far as his responsiveness though.

As for me, seeing Jeff was like seeing a long lost friend! Before The Wiggles became The Wiggles, a few of them were in a band called The Cockroaches, and they played at our high school discos. Ah! The memories! We got a few pics, but unfortunately, Kane only came out of the bathroom and spoke to Jeff in the last few minutes before they left (so we sneaked a few snaps!).

I just had to give Jeff a hug, to say thanks, and because it almost felt like Id known him forever!

Thank you Wiggles!

Holidays

The Easter Bunny even visited Josh, and Sunday morning, when I woke up, there was a choc bunny, fluffy bunny, and some Roses choccies on Josh's bed. Thank you very much!

Sunday at Poppy's for Easter went really well... Again, I was quite well prepared regarding supplies, and I'm pleased that while looking after Josh is now a full time thing, we were still able to participate and enjoy the company, and the day. I think it was a nice surprise for everyone to see Josh there. :)

He was tired though! We returned to the hospital by 3.30pm, and Jojo was alseep by 8pm.

It's Tuesday today, and I havent been home since Friday, and even that was only for an hour-and-a-half. It's all due to the lead up to going to Bear Cottage, and getting Josh home. Not much happened yesterday; in fact, John and the kids didnt even come in. We thought it was more important that John get as much of the doorway from Joshy's new room (through to the bathroom) done. We did have visitors though, and I took Josh for a walk in his stroller, which we will borrow until the wheelchair is decided upon, and custom made.

Today was busy with more meetings, including with the Social Workers, and a hand-over to our new Case Manager, which is great because that means we just need to liaise with the one person for any queries, or paperwork etc, instead of trying to remember who we see and for what.

It's Kayla's 7th birthday tomorrow, and I feel bad that I haven't made her her nominated cake. One of our traditions is that the birthday kid gets to choose what cake they want made, and I attempt to create it! This year she chose (and I actually was a tad gob-smacked) a "pool" cake. It's simply a round cake, decorated with choccy tv snack bikkies, and on the top is green jelly (for the water, but I was going to use blue jelly, because green pool water? Ick!), with some other bits and pieces for effect. Time wise, however, it just wasnt gonna happen! So, after promising to make her that very cake at a later date when Josh comes home, she will no doubt by now have chosen a cake for us to cut after dinner tomorrow (since John and all the kids left to do a bit of shopping).

Every night I sing songs to Josh. You know, like, Twinkle Twinkle, and other soft lullabys. I also try to sing one of our favourites, skida-marink-adink-adink and I can never get all the way through it before I start to cry.

Another song, that was purely Joey's and mine, is a piece that Lisa Crouch put together. I actually cant remember the title, but we call it the Hot Hellaboon (Hot Air Balloon Song).

Saturday 11/4/09

(taken from my journal)

John and I were both supposed to get a massage yesterday, but the Social Worker told us that they realised that it was Good Friday, so it has been postponed...

So, instead, we were given a two hour "gate pass" and took Josh home for an hour or so!! We arrange that John would meet Josh and I out the front of the hospital at 11.00am. I wheeled Josh in a stroller, and placed Josh in to a car seat the Rehab Team had loaned us the day before. It was quite tricky to get Josh in to both the pram and car seat, because he doesn't automatically bend at the "right" places now, and we have to ensure his hips and butt are right back, without letting his head flop (although he isn't too bad at holding it up), and at the same time watch we don't tug at his shoulders. I'd prepared a kit bag of supplies - eye drops, tissues, mouth swabs, sterile water, saline, gauze, portable suction unit, catheters for suctioning etc. The only thing I forgot was the power cord (for the portable suction unit) which John reminded me of the car, so it was a quick trip back to the room to get it.

For the journey home, I sat beside the car seat and John got Josh from the stroller to the seat. everything went well. I was most concerned about the car ride, but Josh seemed fine. Once home, we put him in the stroller again, and took him in to a couple of rooms. The we put a Wiggles DVD on (of course!). I managed to put on a load of washing, get the kids some lunch, coffee for John and myself, and before we knew it, it was time to get back to the hospital.

The whole thing went really well - Josh didn't break out in blotches (as he tends to do sometimes now), we didn't have to suction more than usual, his breathing didn't appear more rapid, and I seemed to have remembered to bring everything that was needed! Yippee! Now, when we surprise Johns family with a visit from Josh tomorrow, we'll look like we kinda know what we're doing. :)

Pictures soon!

We returned to the hospital around 2pm, and John went straight back home with the kids, ready to work on more renovations to the bathroom and Joey's room. That meant that Joshy's feeds were about an hour behind schedule. Later, I took Josh to the cafeteria to meet some of the ladies who hadn't seen Josh yet, but after that, the afternoon stretched out with just Jojo and me.

I picked up the book "The Firm" by John Grisham at the hospital stall on Thursday, and am loving the read. Loved the movie too, but original books are always better. I was reading "Angela's Ashes" by Frank McCourt, and was about 3/4 through it, went it suddenly went walkies from Joshy's room ( a few weeks ago now). Grrr. In between books, I read Mills and Boon for a bit of light reading. I read while I watch Josh go to sleep, or write, or watch a movie. Ive never watched so much TV!

The watermelon lip gloss I bought Josh a few weeks ago also disappeared, along with a gorgeously soft teddy given by Care Flight. That though, I think was gathered up with the linen...
During Doctors rounds today, the head consultant (at the moment) is the guy we haven't seen for a few weeks now, and he basically told us to get out, and leave Josh. That is, to go out as a family and go to the Easter Show or something for example, and leave Josh in the capable hands of the nursing staff. (I knew "something" was happening when two nurses followed the Doctors in to the room). After the Doctors left, the nurses, who are just lovely people, told us (Johns brother and family were visiting) to go. "Go on, out you go. Go for a coffee or something. We'll bath Josh and change his sheets. Go for 1/2 hour. An hour would be better". So, out we went. Meanwhile, John came with the kids, and saw us in the playground. He went along to Joshy's room, and, after giving Jojo a kiss, was told the same thing - out! My dad came to pick up Kayla and Kane (who are staying there for the night) and again - out! I have to admit, it was nice to not have to rush back.

So, it's 9.45pm, and Joshy's sleeping now. I put special lubricated gauze (Bactigras) over his eyes to keep them closed and therefore moist. He'll have one last feed at 10.30pm, and then I'll catch some zzz too.

When he is sleeping, my Joey looks just like the Joey Ive known for 3 years and 6 months. xx

Update

The last few days have been exceptionally busy...

Tuesday, the Rehabilitation Team came by, and it was suggested that Josh be given some botox in to a couple of key areas, to help loosen his muscles. There was an available time that afternoon, so after discussing it, we agreed to go ahead with that. The botox was injected into the left side of Joshy's neck, which will hopefully reduce the stiffness and his wanting to pull his head to the right. Botox was also injected in to areas around his shoulder, and in to his calves to help his feet.

We also had another group meeting on Tuesday, but that didn't go for long, partly because of the time for Joshy's botox procedure overlapping with the meeting. We mainly talked about the steps required to enable Josh to come home. There's still a lot to be done. Modifications in the kids bathroom need to be finished, as well as moving things around at home in general, and getting Joshy's room ready. Then there is the equipment Josh will need; wheelchair, car seat, bed and mattress etc.

The other thing I mostly concerned about is the support we will be entitled to and are likely to receive once we do go home. The relevant people are still trying to find that out, but I know how tough it will be.

I've said before, and I'll say it again; everything takes so long! The OT is in discussion with the builders about requirements for the modifications. Things need to be done a certain way, or else anyone else that comes to care for Josh (as an example) may not be "allowed" to, due to OH & S requirements.

I was meant to go home early on Wednesday, to just have some time at home by myself, but it ended up being one of the busiest days. We got to trial a couple of potential wheelchairs for Josh, and borrowed the one we liked for a few hours. We also looked at some more shower chairs. Later that afternoon, a bed with air mattress was delivered to Josh's room to trial. It looks like a regular bed, with a light wood grain finish, but has all the bells and whistles of a top hospital bed, such as being repositional and adjustable, and a swiper key lock. We have been listing the pros and cons of the bed, but would definately like to try another bed.

Final plans are also underway to enable our stay at Bear Cottage next week to happen, and go smoothly. There's a bit of confusion as to what day we leave, how long we're there for, and even how we get there and back, so considering we are supposed to go next Thursday, someone had better sort it out...

By this evening, I had only been home for around 8 hours in 4 days... Kayla and Kane were picked up from school early (after their Easter Hat Parade), and not long after I got back home with them from the hospital, we had a planned visit from the Social Worker and Play Therapist, as I'm concerned about a couple of things we've noticed, like crying too readily, and anger. Nothing really came up in Kane's session, and I was not surprised by what Kayla revealed in her drawings and writing during her session.

Briefly, a couple of other things that happened this week:

* Joshy's PICC (long line) was removed from his right arm, but now that is hard to bend (at the elbow). His left arm however, is constantly more bent, perhaps due to that shoulder problem, and we have to stretch that out.

* Josh now only receives bolus feeds; 200ml of Pediasure, six times a day.

* A sputum sample was again taken the other day, and it reveals that staphylococcus aureus is again or still present, and is on antibiotics.

* Have received some lovely gifts by unknown people; a red, black and white farm animal mobile (hand made and painted), a visit from a lady who read about us in the paper (and a generous donation), and a Wiggles DVD and some things from another Grandma who rang (also after the newspaper article).

* An amazingly generous donation of Easter goodies, gift cards and loads of fun stuff for the kids.

Thank you. xx

Fingerprint

I really wanted a special keepsake of my Jojo, and the lovely Jodie from Smallprint kindly agreed to come to the hospital to take a fingerprint of Josh, and turn it into a special keyring.

Its something I will treasure forever, and will get my other kids prints done as well.

Check out the range of jewelry and bits at Smallprint.

Is it or isn't it?

Josh was amazing on Thursday after his procedure. His eyes looked really clear and controlled.

Since there wasn't a bed available in Joshy's room, the social worker got me a room for the night in the Parents Hostel.

On Friday, Josh looked okay, but not as "bright" as the previous day. He was receiving a (background) infusion of Fentanyl, and bolus amounts as well if we thought he was in pain. Fentanyl, it is said, is 100 times stronger than morphine!

Josh was moved back to the original ward he was in on Friday afternoon, but in a different room to the previous one. I came back to the hospital (with the other kids) around 6pm, and the first thing I noticed was the lack of light. The other thing noticed was that Joey's left shoulder appeared to be in an awkward position. There were 2 nurses around Josh, and John as well, and they were trying to ascertain if there was something wrong. Since Josh normally has a jammie top on, it did look a bit out, but I thought perhaps he was just stiffer than normal.

Later on, when the physio came to do chest physio (patting), I was talking to her about positioning Josh properly because his head keeps going to the right, and his neck looked tense, and I mentioned our concern about his shoulder. As she was looking at him, I suddenly asked "is his shoulder dislocated?" and she said, "yeh, that's what I'm thinking."

So, that started the chain of events that lead to bolus amounts of fentanyl (given whenever we thought he was in pain, or for whenever we repositioned him), x-rays, and eventually, today, a CT scan, along with numerous visits from doctors and medical people both in relation to Joey's shoulder, and his overall care.

The first lots of x-rays weren't clear enough, which is why the CT scan was requested. Being the weekend, that slowed things down as well. At one point we were told that because we were not exactly sure when or how this dislocation occurred, that perhaps it was caused by a spasm, and also because Josh has such high tone (stiffness) especially in his arms, that that may have cause the shoulder to pop. It was suggested that one option could be to pop it back, and if it popped again, rather than extensive invasive surgery, to leave it, that it may hurt for a period, but that would cease after a period, and he'd get used to it. No pun intended, but that did not sit well with us.

We were not happy that it took (what added up to) 3 days before a conclusion and approach was reached regarding his shoulder. Finally, after three orthopedic surgeons looked at all the scans, they decided that Joeys should is in fact NOT dislocated, but what they call sub laxation.

We had to jump up and down a little, but at least we know now what it is (or rather, what it's not).

In PICU

The last few days have been very busy in the lead up to Joshy's op. Along with the usual visitors from family and friends, there have of course also been the usual visits from physio's, occupational therapists, the rehab team, different people involved in the operation Joshy had done today, and other medical people.

It would seem that this op, particularly the fundoplication, happened at the right time; Josh's vomits have been increasing over the last few days, and last night it got scary. We've been told that normal stomach secretions are a yellow-green colour, and at times, this is the colour that has shown. But over the last day or so, they had gone back to a dark brown, or as its called by medicos, a coffee bean colour. This colour suggests old blood mixed with the stomach secretions, but it's difficult to ascertain where the blood comes from. It could be anywhere from his nose, down to his stomach, or it could be from an ulcer perhaps (although he is on meds to lessen the likelihood of that). There were 6 or 7 "vomits" of this colour, but eventually they stopped.

I didn't sleep too good, even though Josh had a great night. Lots of dreams.

We've had our own room since we've been in the normal ward for last six weeks, but this morning I was told I needed to pack the whole room, even though it's likely Josh will return to the ward sometime tomorrow!

Josh was taken up the surgical ward around 9am and they gave John a buzzer to notify us when Josh was in recovery. He came out around 2pm, and we met him in ICU. We were told there were no problems during the procedures, which is great. He is a champion!

It is expected that feeds via his PEG button will start tomorrow, and hopefully he'll be out of ICU after that.

This pic of Joey was taken about an hour after being brought in to PICU.