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Wednesday, September 7, 2005 Hi Everyone!
Oh dear, it has been a while sine we have updated Jack's page. It's not my fault, I swear!
Spring is now here! *yay* Winter is finally over, and it is only going to get warmer from now on!
Jack has been well, he has made it through this winter without hospital admissions. He did have a slight cold which lasted a few days, Mark, Jasmine and myself were much more sicker then Jack was.
In June, Jack had to go to theatre to have has trachea dilated as there was trouble trying to remove the tube during a routine change (in hospital). After the ENT surgeon was called to remove the trach, Jack was scheduled to have dilation done in surgery. All went well. However, Jack lost his 2 front teeth due to them being knocked out by the scope. Poor baby :(
We are looking into a Special Early Learning Centre for term 2 next year for Jack. We would like Jack to be part of their program, as he does have significant global delays, and even though he can go to a regular kindy, we feel he would benefit from a specialist centre.
I had a lovely conversion with Benjamin's Mum, Connie, Last week. It was great to speak with her, and hear all about Benjamin, it had been well over a year since we 'spoke'. Don't forget - it is Benjamins 3rd birthday on the 12th of September! Happy Birthday Benjamin!! :D
Jack's Birthday is coming up in 3 days. We haven't planned a party for him, however we are planning a big fun day as a family. We still have not picked out a present for Jack. Anything to do with those Wiggles will do Mr Jack.
I think that is all I can think of for this journal entry! I will save some for our next entry, which will be soon :)
All our love
The Gardellini family
xoxxo
Friday, May 20, 2005 1:46 AM CDT Hi Everyone!
It has been a few months since we have updated Jack's page.
Jack has been quite well in the past few months! He was admitted into hospital over Easter as the transformer that powers the ventilator blew up  , so he had to be placed on another ventilator until the part was replaced.
We are still receiving help from carers whom come into our house 30 hours per week. This helps us a great deal! I have been able to return to study because of this.
Jack, himself has been growing and he is quite personable and has an amazing sense of humour!
Recently he has been experimenting with food at the dinner table with us. He no longer enjoyed watching us eat; he wanted to join in too! So he gets to "play" with his food and he samples most of it. He is not swallowing so it will be a great deal of therapy and a long time before we receive proper help from speech therapists as the hospital and community services have there role to play and the ones most qualified prefer not to have Jack under them as the community services are ones supposed to be there for Jack. It's a mess and we have had enough of the rubbish to be honest. *sigh*
Jacks wheelchair is supposed to being 16 weeks away, yes; we have been saying this for almost 2 years. Seems as though when you stamp your feet and start screaming when you are at breaking point, its works to your advantage?? If only we had the thousands of dollars too spare, we could do simple things like; Take Jack for a walk? Maybe take him outside without it being the biggest brain strain?
So, we have a temporary chair until Jack's chair arrives, funny thing about it is that its costing $1,100 to modify it so Jack can use it for 16 weeks.. Government agencies really should stop being so stingy because, in effect it has cost them an extra $1,100 and more paperwork 
We have a new addition to our family, a new puppy called Inca! She is a Chihuahua cross and she is divine. Jack is slowly getting used to her and she has started to become worried when we suction Jack, she tries to get up to him to kiss him. It's cute!
I have updated new pictures of Jack in the album! I hope you enjoy them.
xoxox
The Gardellini family
Friday, January 14, 2005 9:01 PM CST Happy New year everyone!
Well it's 2005! It has been a hectic 6 weeks!
We have been recieving help from 2 lovely carers thats come into our home 4 days a week for 5 hours at a time. Dione & Jessica have been a big help to us! We have been able to go off and tend to housework, or our hobbies whilst they get Jack ready for the day.
Christmas wasn't what we thought it would be like. The 24th December marked the 1st year anniversery for Jack coming home for the first time! Firtly, he wasn't home the day before Christmas, he was in hospital with tonsilitus and some mysterious bug/viral/cause? that caused his Liver function tests to go through the roof! Which caused a lot of concern as to what had caused it. Jack was happy in himself, apart from a week of excess secretions and oxygen requirement.
As the days led up to Christmas we knew were going to spend it in hopsital. It wasn't a let down for Mark and I so much, is was the fact that Jasmine & Jack has to spend the day of all days in a hospital setting.
Christmas day was a blast, I think all of the Chrismtas decorations in the hosp room helped make the day so much more brighter for all concerned!
My sister Emilee spent the Christmas period with us, and it was great company for us.
A few days after Christmas, Jack was discharged! We came home with what seemed to be half a bedroom full of new toys!
Jack has been enjoying the Playdough Santa bought him the most. His books are his prized possesion, and you will find there is always a book close by to him.
Oh! We have great news!! We have been told the funding for Jack wheelchair will be really soon. He has another fitting this week, and then after it is ordered it will have to be modified to accomodate the ventilator and his all the equipment! We are extremely pleased to hear this. How long have we waiting for this, I cannot recall.
I have posted some new pics of Jack in the photo section, along with some below.
I will update soon, I promise!
Love,
The Gardellini family xoxo
Aunty Emilee, Dad & Me
Jasmine & Emiless & one of Santas dogs!
Me & One of my Clown doctor buddies- Dr Blot!
Me playing with playdough (again!)
Wednesday, November 10, 2004 Hello Everyone!! Here is the update!!
Sorry it has been a while since we updated Jack page.
Firstly, Jack is doing really well. He is happy, healthy and growing into such a little boy.
Jack has been busy with play, you know, Every day life hehe!
He still loves reading books, and most of all throwing things away and signing "All Gone" he has that twinkle in his eye, he is a cheeky monkey!
I have been speaking with Javads Mummy alot lately, I am glad we have been able to meet up at the same time on the Internet. I hope yo catch up with Amanda and Connie online - Guys we keep missing each other!!
Last month, we were approved of 30 hours a week of in home care. Over the past week we have met both our new carers, Dione and Jessica (also!) They are both lovely and we look forward to getting to know them more, and we welcome them into our home. Today, Dione, spent a few hours with us. Jack just adored her, this is pleasing and helps ease the transition.
Summer is on its way.. well, the past few weeks we have received double the amount of November rain fall, We are not complaining, as we do not enjoy the awful heat which will be upon us soon.
Christmas is fast approaching, we have to think about pulling the Christmas tree out of the roof!
I will make sure I update with weekly updates from now on.. if not send an email to get me updating!!
Love from
The Gardellini Family
xoxoxoxo
Tuesday, September 21, 2004 9:38 AM CDT Hi Everyone,
Jack had a wonderful birthday! it was a beautiful fun day! Jasmine had the day off school so she could share it with Jack ;) Our family came over for cake in the afternoon and it was nice.
Jack enjoyed his birthday so much, we think he really enjoyed devouring a lolly pop, which surprised us as he won't take anything by mouth. Perhaps he knows he is a big boy now, and tasting foods is the way to go!?! Jack is telling everyone he is 2! in sign lanauge, he is such a big boy!
The weather has been warming up, Jack has spent some time outside, it's a little hard as he is light sensitive and he will not wear his sunglasses!! So he dons a baseball cap and we try to keep him out of direct sun, so far so good.
He had a go on the kids swing set outside, we need to modify it so he doesnt have to use a bean bag to swing, nonetheless he enjoyed it! more more!! he said! He and Jasmine laughed there heads off whilst swinging, he was laughig everytime Jasmine passed him on her swing, was beautiful!
Jack has been going through a spurt of energy recently, he is gaining more strength, which is very noticable, more so then ever! very exciting for him as he now is holding his head more and is sitting up with support behind him. We really hope we can work out some arrangement so he can sit on the floor with support, it hurts our back supporting him on the floor! We will find away I am sure.
We are trying to work out what we are doing for christmas, our families live away in the country and we are not so sure what is going on this year, hopefully we can have a big Christmas as last year it was just us, as Jack has just come home from hospital for the first time. We are thinking of presents already, so many to choose from, Santa will be busy, wink wink!
Looking forward to seeing my little sister's in the next as school holidays is at the end of this week! Jasmine is excited, no school for 2 weeks hehe..
Take care
Love Jack & family
xoxoxo
Ps. We will be barracking for Brisbane Lions this weekend! Go the lions!! Yes,Yes... say all you want, I am not a traitor, We are going for the better team :P
Friday, September 10, 2004 Jack's Birthday!!
Happy Birthday Jack!!!
Happy 2nd Birthday Little Man!! We hope you enjoy your day as much as we will!!
We love you so much! Look out, you are in for such a fun filled day!!
Love from
Mummy, Daddy, Jasmine & Pixie
Sunday, September 5, 2004 Hi Everyone,
We are terribly sorry we havent updated in so long (It has been almost 2 months ) So I will update from where we left off!
End of July
Just before I went away for my holiday, Jack fell ill to RSV and was admitted 2 days before he was supposed to be for admitted for respite (While I was away) He faired extremely well through all of this, He had no oxygen requirements, and was just a little miserable :(
After 10 days he came home, and he has been home since!
The boysy has been coming along great! He has been spending alot of time playing and learning new things, he is picking things up so quickly, he is very attentive.
He recieved a switch button from his Speech therapist, that allows us to record songs, stories so he can read along with the book, act out certain roles and of course sing! He has only had this a few weeks and now his speech therapist says he has advanced that so quickly we need to think about getting Jack a more advanced communnication board, so he can communicate a whole range of requests, answers and too be funny or as naughty as he pleases!
We had a meeting with his OT, SP, PT and Psychologist, we spoke of the goals we would like to get Jack too in the next 12 months. We are excited about this and look forward in aiming for these goals.
They include, getting Jack to sign more, teaching him more about everyday things, starting to stand in a stander aswell as play time (which is his favourite)and keeping his mind active so he does not become frustrated.
Jack has begun to be able to speak past his cuffed tube, he can manipulate it so he can get sound out, this is very clever of him as he moves his ventilator circuit just to the right position! He has been saying "Hello" aswell as singing along with anything, and general chatter. Too hear him laugh for the first time was priceless, now we cannot stop tickling him!!
He has also come forward extremely well in regards to holding his head up and sitting, he is sitting supported in his chair and holding his head up by himself for up to 2 hours, he can tire easily, so some days this is less. He is extremely brave and sometimes needs to be told to be careful as he will lose his balance if he wiggles too much!
Jack adores Jasmine, he loves to play with her and they have a way of communicating, its so wonderful to see them laughing at eachother. He has learnt all the ways to annoy her too! He pulls her hair, and tugs her arms.. he has even learnt to put his fingers in his mouth and then wipe his goobers on her as he gets such a reaction from her! He is very cheeky! He has also taken a strong liking into pulling off his ventilator circuit and putting the cicuit in his mouth, much to the dislike to Mum & Dad (and the neighbourhood too!) He enjoys the force of the air blowing in his mouth and making his cheeks flabber! He is one silly doode!
We are glad spring is finally here, the cold and wet season is on its way out! Hopefully we can start taking Jack out alot more now, since it shouldnt be raining all the time now!!!
Our dearest Matthew, friend of Jack, passed away on the 27th of August. Matty was 3 years old, Such a Beautiful, funny, and clever boy! We feel such a loss and we are thinking of you both, We love your family and too have shared so much of eachothers Joy, frustrations, Accomplishments has formed a bond we will always share between us.
You know he will be always with you, he has his little brother Nicky to watch over. We miss you Matty boy.
Tuesday, July 13, 2004 Hi Everyone!
Jack has been home almost a week! He took a few days to settle back in again, especially going to sleep in his bedroom. He is now settled in and we are getting used to the swing of things. I will be going away next week, for a weeks holiday with a good friend & so Jack will need to go to 4th floor for the week, Most of the Trach/Vent staff know Jack after last admission, so we are both feeling comfortable with leaving him there for this one time.
We need to get together with Jack's PT's and Ot's regarding Equipment and more devices for him to use.. apart from that, we feel like we are on holiday and as it is school holidays, we have had family visit us, Jasmine spent 5 days away in the country with Nan & Pop. Its great to be able to relax somewhat at home, the long drives to the hospital each day are tiring and nonetheless stressful.
We would like to thank the lovely ppl from Caring Hugz and Hearts for leaving lovely messages in Jack's guestbook, it really does brighten you day to see that someone has left a message. thank you :)
We will try and update very shortly..
Take care
Jack's family
UPDATE Wednesday 7th of July 2004
Wednesday 7th of July
Hi all,
Great news! I will be discharged tomorrow!! Hooray!!
For those who aren't sure of what has been happening, I was supposed to come home last Friday, however mummy had a very sore ear, and then! When I was supposed to come home again on Monday, her other ear started to be very sore!
Anyway she is well enough and hearing a little better so I can come home tomorrow! I cant wait, I have been stuck in my hospital room forever.
My big sister, Jas, has gone away for a week to the country to stay with my Nan and Pop. She is going to have the best time, I will see her in a week, so I will just have to put up with Mummy and Daddy all by myself, hehehe.
I have great news!! My best Buddy, Brodie is much better! he has been through alot in the past few weeks, he is now out of ICU and is in the room next to me tonight! Mummy and Brodie's Mummy were pulling faces at each other today through the windows, how silly of them!
I will get Mum to add more about me when she has the time in a few days,
Take care
Toodles.... Jacky G
Tuesday 22nd of June 2004
Hi everyone, Sorry for not updating, It has been a hectic few weeks. firstly let me thank everyone who has phoned and emailed & signed Jacks guestbook. Jack had an xray last week which showed he still had some collapse, we were disheartend that Jack was not picking up as quickly as he normally does. Jack also tested for Psuedomonas (a nasty bug common to people with trach's) He finally* started on an Antibiotic last friday, and he seems to be picking up now. He has been in air for over 24 hours which is the first time in over a month!
Jack's Poppa & Nanna bought him a portable DVD player that Jack can watch whilst in bed.. A wonderful gift from his Poppa with a big heart!
Jack has been feeling alot better in himself, he is being very patient and being such a good boy. We miss having him home, I Have been staying in with him nearly everynight, as it makes me feel alot better being there with him.
We would love for everyone who prayers, to pray for Jack's Buddy Brodie.. Brodie has been putting up the biggest fight the past week in PICU. We love Brodie so much and it hurts us to see him so sick.
For those who know Brodie, please keep Jackie & David in your thoughts, they are needing all the strength and love at this time.
We love you Brodie Boy xoxoxox
-------------------------------------------------------
Sunday night, 6th of June 2004
Jack was admitted back into hospital this morning *sighs* he had alot of secretions and high pressures on his vent this morning, so he was admittted, not sure if he has come down with something, tests are being run again. Will know what more tomorrow.
Jack is sorry that his missed his Nanna & Poppa today, he said he is sorry, but would like you to know he is being dosed up with Bob the Builder on TV which makes everything better.
Jessica xoxo
Saturday night, 5th of June 2004
JACK IS HOME!!
Jack is home & happy, his face lit up when we came home and he Jack come home today, after 19 days in hospital, he is still not 100 percent himself, but lots of love and chest physio will get him right in the coming week.
We have come in contact with another family here in Australia with a little gorgeous boy called Zackery! He is almost 4 months old. I am glad Zack's Mum contacted us.
Please visit Zackery's Webpage
Zackery's Webpage!
We will update soon
Take Care
Jack and family
XOXOXOXO
Tuesday June 1, 2004
Hi Everyone!
Jack is doing much better! He is still in hospital, he oxygen requirements are 23 percent and he should be in air by morning, Today his Physio was cut back to 3 times per day and once over night. If he does well this he will be home in a few days! Yay! As we only do chest physio 2, sometimes 3 times during the day a we want to get back as close to that before him comes home. I think we will be getting up at least once over night to suction, turn and possible chest physio for a week or 2 after he comes home. I think we will appreciate the fact we do get more sleep when he is at home then whilst he is in hospital. It wears on us traveling in everyday to see him, take and picking up Jasmine from school & so forth. He really wants to come home, when we put him in his pram today, he thought he was coming home and got excited, that waned after he was put back into bed, poor lil man.
He is back to himself, Cheeky!
Jack received the Fluvax shot today, to help protect him against the flu this winter, wasn't to impressed with Roz for giving it to him. He also got a visit from his Aunty Katherine today, which he enjoyed the added attention alot, He was telling her stories, and just loving every minute of her visit.
He might be going to the ward in the next day or two, depends on staff. We were hoping to bring him home from PICU.. we will see.
I will update when I can
Jessica
Wednesday May 26, 2004
Hi everyone,
Last week Jack had a rough day, he had lots of secretions and by 2am he needed alot of oxygen so he had a trip to hospital via an ambulance as it was the middle of the night and we were not sure if he was going to get worse and it is safer to err on the side of precaution & take him to hospital.
After 24 hours he still needed a small amount of oxygen & he wasnt 100imself so he was to stay in hospital for a few more days to see how things panned out.
Jack usually stays in ICU when he is in hospital, however because he is stable and has been home for a while now, it was felt he should be introduced to a ward setting as times when he is not so sick to be in ICU or Mark and myself need a break he can stay in a ward setting.
Thursday evening, Jack was transferred to 4th floor medical, ICU nurses spent the next 2 days helping the staff to be familiar with Jacky and his care. We owe alot of thanks to Jared for working so hard at making the transition alot smoother for us, thanks Jared :D
The staff are lovely on the ward and went to great lengths to make us feel comfortable.
We were hoping to have Jack discharged Saturday, although he still needed oxygen and had some high pressures on his ventilator. On Sunday he still wasn't himself and he spiked a high temperature at lunch. Most of the afternoon and the evening Jack's nurse and I spent hours doing chest physio on him as he had a lot of crackles and was needing more oxygen here and there.
He seemed to be ok once he settled for the night, I was so exhausted I slept right through until 5.30am when I was woken by a nurse and there was a few nurses in the room, doing physio on Jack. The registrar from ICU was called down as Jack's oxygen was around 60nd he was irritable, his heart rate was up, temperature was up etc. Poor little guy he wasn't so happy.
He had a chest X-ray at 8am, his respiratory team came to have a look at him, he seemed a little better then he was around 5.30am. We spent alot of the day doing chest physio on him and frequent suction, he was terribly upset by this. Around 3pm his respiratory Doctor came in to report his chest x-ray confirmed a complete collapse of the left lung. Jack was moved back to ICU within a hour. He has been back there for 2 days now, he still has a high oxygen requirement and has been on hourly chest physio during the days and 4 hourly during the night.
We are still waiting the results of the cultures they took from him to see if he is brewing a viral or bacterial infection. He is on IV antibiotics and it will be at least 5 days before it will be taken out and he can come home. It has been pretty exhausting for Mark and myself. I am staying at home since he is back in ICU, when he is moved back to the ward I will be staying in with him.
He has been feeling pretty miserable, although today were were entertained by him, he had spouts of energy and was being the charming little guy that he is.
So it will be a week before he is home again, which is sad as we miss him terribly. It is always a woory that the longer he stays in hospital the chances of picking up a bug is greater.
We will update when we can..
Take care
Jack and family
XOXOXOXO
Here are some pics of Jack taken in the last few weeks.
Friday, April 30, 2004 Hi everyone!
Jack continues to be well, and is thriving at home!
We are enjoying our days playing & teaching him all things about being home. He really has settled in, We have a routine.
He continues to come off the ventilator each day, we are slowly adding on time as the weeks go on. He is doing very well. He is also gaining strength which is consistent.
He loves to learn new things regarding movement and enjoys being tickled alot.
He continues to get home visits by therapists and is making progress.
On the equipment front, we are organising getting a prone stander for him so he will be able to weight bare on his legs, this will improve his muscle movement and help lessen the leg contractures he has. We are also trying to arrange to get a larger car seat to be trialed, after we trial a suitable seat, we place an application with the wonderful people at the Variety Club to help fund the seat.
We have also have been in contact with another Carer organisation, which they have come out and assessed Jack and he will be able to be cared by care workers trained with Tracheostomies & ventilators. We are approved of 9 hours a week and we will start off with 2 half days to begin with. We are not sure when this will start, it all depends on availability of staff, it should not take long.
This will help us with the mornings routines with Jack.
We will also have an extra pair of hands to help take Jack out shopping with us, or if we want to have a rest in the mornings. It has been a hard decision accepting help, as both Mark & I felt uncomfortable with having someone else in the house with us. However we do appreciate that it is important to have help a few hours of the week.
We are very happy that Jacks old PICU buddy Brodie, will be discharged from hospital in the next week!! Finally Brodie and Jack can play with eachother in a home setting, also it will be great to catch up with a good friend I made whilst being at the hospital!
We are really happy for Jackie & David!!
Please think of Jacob & Javad, they have not been so well lately, We wish you both lil cutey's well & await your arrivals home.
Thanks for visiting
Jacky G & family
Email us!!
Monday, April 12, 2004 Hello all,
Sorry for being so slack in updating, was told off yesterday by some certain family members that I am getting slack and not updating, so here goes.
All has been good on our end, Jack is doing great.
The last few weeks we suspected Jack's cuff had a leak as he had alot of secretions and had a few desat episodes.
We took him into hospital where we changed his trach tube to a Cuffed Shiley 4.5 ped. We all didn’t want to have to go to this but it is in Jacks best interest, thankfully our lovely Trach nurse lent us her pressure monometer so we can check the cuffs pressure instead of using the old syringe method, thus not over inflating and causing damage..
This is a temporary change until the Bivona trach arrives, still waiting.... la de dar... He is sleeping so much better at night again, we don’t have to suction him for an hour because we turned him over, and it’s great that he is not put at risk from aspirating now.
So Jack was in for 2 nights and let out again! Yay! He wasn’t himself in hospital, a little withdrawn and certainly was not happy with Mum & Dad, we got disgusting looks and we were ignored alot of the time. I am glad he is home and is back to himself. It isn’t nice seeing him like this.
Jack coming along well, he is getting busy playing and problem solving his toys and anything he plays with. He is still practicing holding his head and still has some way to go, it will come in time when he can hold his head up by himself, and he tries so hard. We are very proud of him.
We have come to the "Yes" and "No" bridge with Jack, he shakes his head for both, and when he is told "No" for scratching himself, pulling at his button or taking off the ventilator, he finds it funny and laughs and shakes his head "No"... how can we be serious with a cutey like that?
I have so much I could right about Jack and his doings... But it will be left for another time.
I hope everyone is well and please take care
Love
Jacky G.
oh there are new pics of the man himself in the photos section!
Saturday, March 27, 2004 7:52 AM CST Hi Everyone!!
Jacks been home for 4 weeks now, 2 weeks since visiting hospital, We have been having a wonderful time with Jack at home.
Jack has really blossomed the past few weeks, he is surer of himself and is becoming a real little boy!
Everything care wise has been great, He still sleeps all night (except 2 nights he wanted to play at 2am > 4am)
Jack has been coming off the ventilator and is doing great; we have been taking him of for 3 times a day for an hour and a half.
I guess we have been busy, with Jack and our lives to really contact anyone. After such a long time we can finally have our 2 beautiful children with us at home, Waking up to Jasmine in Jacks bedroom playing with him is just an awesome sight! (except when she wakes him up at 6.30am! hehehe)
We spend alot of time playing with Jack, he just loves it of course. Singing is his favourite and he loves to dance to music, he can bust a few moves lol, He has been spending alot of time sitting in his chair and sitting up on the lounge. His head control is really coming along well; he held it up by himself for a minute last week whilst sitting on dads lap. He really enjoys being tickled and his latest game is wrestling with mum by grabbing my hands and shaking them as much as he can, he is very funny.
We have been slowly getting jack to taste different foods, whether it be a dab of yogurt on his tongue or a lick of ice cream, he watches us so intently when we eat so we include him too.
He is also taking to not enjoying been orally suctioned by us, he must do it himself, the consequences of not letting him doing is tantrums! Along with pulling off his ventilator circuit and pulling at his feeding tube or button we have to watch him, I think he has learnt a thing or too from his sister hehehe.
We are still waiting for the external batteries for the LTV to come in, We really need them, about 3 weeks ago we had a bushfire close to our house and 75 f the state lost power!! Our supports had lost power as well, finally just before we were to go to the hospital our good friend had power back on so we went and stayed there for a few hours, we were happy we did not have to go to hospital. We are not sure how long it will take for the batteries to arrive, but when they do it will be awesome as Jack has alot of ppl to visit! And we want to be able to take him out places.
Thanks for checking up on Jacks page!
There are new photos in the photo section
Jack & family
xoxoxo
Thursday, March 4, 2004 Hi everyone!
Bout time Mummy got around to writing a journal entry for me, she said she had forgotten.
I have been home for over a week now, I have been having so much fun! I get to play with my sister Jasmine, she is the best, she wakes me up every morning, and plays with me before she goes to school. I have yet to walk her to school with mum and dad because the weather has been so hot.
Here is a pic of Jasmine..
Today I got a switch adapted mouse, so I can use mums computer, I have some fun programs that I can interact with, this will get me introduced to switching before I move up to the technical stuff my OT's are providing.
I have a communication device that I have started using, I started with a very basic box, it can say 4 sentences that I want to say, It's very loud and mummy cringes every time I use it. she turns it upside down so it much more quiet.
I am still getting the hang of it. I like to press it lots!
I can say "Dad Dad Dad" & a few nursery rhymes.
Here is a photo Mum took of me reading a Toy's R us catalog, I love all the pictures of all the toys in there, I read it for over an hour and managed to drool all over it, and I tried to eat it as well.
Jack in a Cranky mood, note the look and pouty lips!
Apart from being home and playing alot and learning so much, I cannot think of much more things to write..
So I will get mum to post new pictures of me in the photo section..
Please sign my guestbook so I know you were here.
Take care
Love Jack
Saturday, February 28, 2004 5:54 PM CST Hi Everyone, Jack has been home for a week now, I had updated my journal but somehow it did not work, I will update it in the next day.
Jessica
Friday, February 13, 2004 2:49 AM CST
Hi everyone,
Jack has been in hopsital for 4 weeks now. He is fully recovered from the Pseudomonas bug. It has taken time setting him up on his old ventilator & the dramas started!! We were about to be discharged when we had some kind of problem with his current ventilator. He was put back on a ICU ventilator for the time being. Jack is about to trial a ventilator he has trialled before. It has arrived and within the next day or 2 he will be put on this. After he has settled on this ventilator and when his daddy comes back, Jack will be able to come home  (Jack's daddy has gone away for 10 days, he is travelling around New South Wales & Victoria with my father for business) He should be home in about a week.
We are having a disgusting heat wave here, it's so HOT!! we have been turning our airconditioner on at 9am each day!! It's so lovely inside our house.
Jack has started coming off the Ventilator again, which I was hoping would be soon, he is tolerating it well, we are starting off with small amounts & grading it up.
Jack himself has been having a wonderful time. He is getting to cheeky! he just adores books, he loves reading time. He is also gaining more & more strength, he is really becoming stronger. We cant wait for him to come home soon, so we can get on with some sort of normality.
Take care
Jacks family
XOXOXOXO
Jacob's Page
Matthews Page
Javads Page
Benjamin's Page
Tuesday, February 3, 2004 Hello everyone,
Jack has been in hospital for just over 2 weeks now; he had a pseudomonas bug which knocked him around a bit.
He has needed a lot of chest physio, suction to get over this.
He was on Benzhexol (Artane) for his secretions, this has been stopped & we are not sure if he will go back on this once he is at home again. The less medication the better, he is now only on 1 medication; Potassium Citrate, to help his kidney's flush any calcium build up, hopefully preventing any further kidney stones.
Jack has begun to say "Dad dad dad" the past week or so, we cannot hear him from his cuffed trach, but it’s very intentional! Dad is so proud of course! I am working on Mummy with him.
We are hoping to meet up with our Speech therapist soon; she has given us a Communication device for Jack to use. This device has big buttons on the front that can have a customised photo/picture with a recorded voice for a particular picture, so when Jack presses a button it will sound the custom recorded voice we programmed it for i.e.: "Hello" "Mummy". We are hoping Jack will benefit greatly from this when he comes home. We have chosen not to introduce this to him whilst he is in hospital as there are too many distractions in there, over the next week we will begin using it.
We wish Jacob Hollingsworth a Very HAPPY BIRTHDAY!!
This gorgeous boy has just turned 2 years old. You can visit his page by clicking here : Jacob's Page
Take care
Jessica, Mark, Jasmine & Jack
Friday, January 23, 2004 Hi everyone,
Jack has been in hospital for the past 8 days, with some collapse and the Psuedomonas bug. He had a few days were he felt so terrible, he was on Chest Pyshio every 4 hours to try to clear his chest.
He is still in oxygen, and will not be able to come home until he is back in air. He is feeling much better now, although he is still a little tired from it all.
We are having trouble with equipment, there is still no decision on which Ventilator the hospital will buy. The Ventilator we came home with is only a loan ventilator, So if the company asks for it back, we will have to stay in hospital, until it is bought, or they get another ventilator they were planning on buying.
Jessica
Monday 19th Janurary 2004
Hi everyone,
Jack continued to teeth all week, he was miserable as one would expect.
On saturday Jack we took Jack to Hospital as he was having problems with the ventilator. He has been in 2 nights now and he has a small collapse on both sides of his lungs, and an ear infection. I am glad I asked for him to stay in the extra night as I did have a feeling it was more then teething from the previous day.
He is feeling a little better, hopefully he will be home in a few days.
We miss him terribly at home!
Jessica
Sunday, January 11, 2004 5:46 AM CST
Hi Everyone
I have been having a great time at home, I went back to stay in PICU for one night last week, My parents went and saw the last installment of the Lord of the Rings trilogy, Mum and dad were talking about it for days! I wasnt interested watching the first 2 movies the days leading up them going to see it, maybe when I am older I'll enjoy it.
A few days ago, in the morning, I wasnt having such a great time, I was finding it hard to breathe a little and I had lots of gunk in my chest. Mum and dad were a bit concerned about my behavior, so took me to PICU so they could check me out. I had my first ride in an Ambulance! The nice man gave me a teddy bear to keep. I like to chew the tag on his ear the best! Mummy told me I was a cheeky boy as when I got to PICU, I was all happy again, she had given alot of CPT and it made me better. I also had a chest X-ray and it came back clear, so I got to come home again the next day.
I have been teething the past week or so, Mum keeps looking in my mouth to count my new teeth, she says I have 2 molars that have just come through & 4 other big boy teeth about to cut. This has made me a little upset and edgy. I have some teething gel that helps the pain go away. Today I felt awful, after I had some pain relief and some gel, I was back to my normal self again.
I love sleeping here at home, its so quiet and I manage to get a full 11-12 hours a night, mum said my sister slept 12 hours straight right from when she was very tiny - and she really likes that idea!
I have had so many visitors the past few days, my 2 cousins are coming to stay with us for one night, I hope they spoil me rotten!
Also my sister is still away at Nan & Pop's, it has been 10 long day's! I miss her, mummy really misses Jasmine, she keeps telling me she misses her.
I have been doing alot of different OT stuff too!
I get to sit right up on the lounge to help me strengthen my head control, I have lots of nappy time off on the floor and I am learning to bring my legs right up in the air once again, I am also learning to roll over again, I will be back there in no time. (I put on lots of weight and it was very hard for me to do this lately)
Thanks for checking up on me, please write in my guestbook to let me know you were here!
Love
Jack xoxo
Friday, January 2, 2004 5:51 PM CST Happy New Year Everybody!
I hope everybody, enjoyed there New Years Celebrations!
I went to bed really early for my mummy and daddy, I dont know why, they just lazed around all night drinking Coffee, they did watch the fireworks to bring in the New year, least they were cool enough to do that.
I have been home for a while now, Mummy said I have spent 9 nights at home already.
It's really Great being home, I have so much fun, however yesterday things got mega boring! My big sister left me and has gone to our Nanna & Pops house in Berri for a few days, I miss her already, Mum and dad arent as much fun as Jasmine, they will do I guess. Maybe one day when I get older I can go too.
Please come home soon Jazzy, I miss you so much!
Jasmine and me..
The weather is so Hot here, I havent felt it as my mum & dad keep me in the lovely cool house.
We are looking after my uncle James' bird, called Flory. He is very noisy and chirps really loud in our laundry, its too hot for him to be outside in this awful weather. He is going home today, I will miss hearing him.
I will tell you all about my adventures another time, I am off to have a bath and then a big cuddle with my mummy.
Oh, Guys back in PICU, I do miss you! Dont worry I am coming in for a sleep over on Monday..
Love,
Jack
Monday, December 29, 2003 Jack's Entry Merry Christmas!
Hello everyone! I hope you all had a wonderful Christmas! I got to come home over Christmas, this is my story..
Going home....
My mummy, daddy & my big big sister Jasmine came to pick me up around late morning, all my stuff (I have tons of it!) on Christmas eve, they put me in the car, and drove all the way to my house! Mummy, daddy and Jasmine could not stop smiling for hours on end, I ended up getting tired of smiling at them as they were clearly going overboard with the smiles.
I also heard them say something like "It's the best day we have had in such a long time" and "This day will go down in history" I thought it was rather odd, so did my sister!
When we arrived home, I was very tired as I hadn't slept yet, mum fed me and I went to sleep whilst the parentals unpacked and set up my toys.. and equipment..
That afternoon, I got to sit in a really cool piece of furniture called a Bean-bag! Dad was being funny and calling me "Jack in the Beanbag" he is funny.
I played and played with my sister so much, she is so nice she gets me all the toys I want and she sings with me, I wonder if I can get her under my thumb? I think I have to try some fake crying with her... Yep! she buys it everytime!
Wow! I got to sit at the dinner table with my family whilst they had dinner, My chair fits perfectly at the table. I must join them everytime they eat - its interesting sitting at the dinner table.
Christmas day...
I was a very good boy Christmas eve, I let my mum sleep all night, well nearly.. she woke up on her own accord at 3am to change my nappy, roley poley me over and give me some suction. Mum, Dad, Jasmine were up early on Christmas morning, I wondered what all the fuss was all about? Dad was making Crossoints, mum was getting ready and Jasmine was watching TV. I woke up after 8am and mum changed me and did some chest physio on me, then she brought me out to the lounge where.........
Santa left Presents for everyone!!
It was so cool, I had so much fun playing with the wrapping paper, mum also wrapped me up in paper, and said I was the cutest present - she is so silly! I got some disney movies, a Magna doodle, and a toy snake and other toys. I loved the snake the best!
Jasmine got so many presents, she must of been a very good girl this year!
I had a great Christmas day! I played all day, slept, watched some movies and had nice cuddles with my family.
Mum and dad, had to take me back to PICU later in the afternoon, they were sad that they had to leave me there. They went home to spend some time with my sister.
Day after Christmas ...
My family came and picked me up to bring me home again, for 2 days and 2 nights this time.. When i got home, I slept and then played. This time mummy and dady only spent 15 minutes setting up everythign as they already had all the supplies they needed.
Mum and dad, was supposed to take me back to PICU on Sunday, however mummy called the lovely Dr's and asked if they would let me stay another day, they said that was OK, as long as mum and dad were getting enough sleep. I told them I was a very good boy and I only needed attention once during the night, and not once the night before. Mum is getting 8-9 hours sleep a night! She told me it was more sleep then she has had in the past year, as she goes to bed very late usually.
I'm still here!...
Today, after staying here for 3 nights, mum got a call from my Polly - she is the boss in PICU, Polly asked mummy when she was bringing me back to PICU as she wanted to know if she needed to have a nurse ready for me if I was coming back, Mum asked if I could stay a 4th night as I am behaving myself and mum and dad have adjusted quite well with me being home. Polly said it was OK (Thanks Aunt Polly xoxo) I hope I am not making the nurses who usually look after me go relieving on the wards as I know they would rather be watching me instead.
Our past few days, have been fantastic! Mum said she has finally had time to do things she has wanted to do for months, she has set up the fish tank in the family room, it's her pride and joy! she is getting it ready for pretty tropical fish, so everyone can enjoy. Its looks really good even with no fish in it, mum said something about biological filtration & pH levels. I dont know what this means but she promised me I will have some fish to look at in a few days.
I love being at home, I have so much to do and look at, I cant wait to go outside when the weather cools down and sit in the shade under the trees. I am going to be a very busy boy!
Thanks for reading my journal..
Mummy said she will keep everybody posted with my home comings..
Love
Jack
Tuesday, December 23, 2003 6:04 AM CST Hi Everyone,
Our 2 day/ 2 nights stay away from the PICU was just fantastic.
We had the best time! And we managed to get sleep, lots of it!!
We went into the link bay around 12 noon and after we unpacked Jasmine’s & Jack’s Grand parents come on and exchange Christmas presents as they were going away. Jack was more then happy as he was held for hours and we had privacy, which is what we have been lacking for a very long time.
Mark and I were surprisingly not as nervous as we thought we would be. We were enjoying being with both Jasmine and Jack so much everything left our thoughts.
The first night Jasmine spent away at her grand parent’s house as we both didn’t know how much sleep we would get, and it was time for mum and dad to be with Jack for the first time.
Jack went to bed at 9pm and we had set up his overnight feeds and gave his medication, put his leg splints on and we both decided to go to sleep around 10pm.
For the first few hours, our sleep was kind of broken as Jacks heart rate kept dipping and I had to adjust his limits lower and lower for the first 2 hours as every time it would beep we would we would jolt out of sleep. Jack was fast asleep and did not stir at all until 3.30am where he needed his nappy (diaper) changed and I took off his leg splints, turned him over and gave him some suction. This took about 20 minutes all up. I climbed into bed and the phone rang at 4am!!! Arghh, our cat at home set off our house alarm. So after the phone call I drifted back off to sleep. At 7am, I got up got dressed and went out and made breakfast and a much loved cup of coffee.
Jack did not wake up until 8.30am. He is not a morning boy; it did not surprise us that he slept in.
We had a great sleep and we both told Jack he was a really good boy for letting us sleep well for the first ever night we looked after him, Jack looked at us like “Well I had no choice mum, you wrapped me up so tight, I couldn’t move all night”
We only had to get up to Jack once over the night – What an angel!! (Hoping it will stay this way)
The second day, We just played all day, went for a walk back to the PICU to get some extra supplies, Jasmine came in and was excited about staying over night with her baby brother.
We all just stayed together and played, Jasmine played with Jack. We were actually getting tired from sitting around and not doing much, doesn’t help that hospital air is not as fresh as I would like, we always get tired being in the hospital.
Last night, Jasmine went to bed around 8.30pm and Jack followed her and was asleep around 9pm.
After we set up his feeds, medications, splints etc. I thought that the first night was almost too good to be true and I went to bed around 10pm thinking I would be up all night.
The first night, instead of waking up at midnight and taking Jacks splints off, we decided we would do it when he needed suction, however Jack did not need suction at all, all night! I woke up at 7 am as the ventilator was making faster breaths, and I looked over to find Jack was laying there awake playing with his hands, bless him!. I was so horrified that no alarms had gone off during the night (apart from when he had sneezed around 11pm) I had to double check all the ventilator settings, just in case.
Mark said he got up and checked on Jack at 5am and took off his splints as they were still on, he did have marks on his legs this morning and a puffy eye from lying on the one side all night.
So once again our boy was an angel for his mummy and daddy, Jasmine had a really good sleep, she didn’t wake up at all as the vent and ox pulse stayed quiet all night.
We all got up, had breakfast, Jasmine and Jack watched TV while we packed up – to go back to PICU, We really packed, we had a whole trolley full and Jacks bed was covered with everything. Back to PICU and Jack is now settled again, until when we bring him home tomorrow (20 hours time)
We really had a wonderful time over the past few days; it was so beautiful watching Jasmine and her brother interact with each other, in an almost family setting.
We are so excited! Having him home over Christmas, and I know it will be the best Christmas ever!
All this waiting, hoping, anguish and life changing experiences weigh up as nothing when you get to have your children to yourself after such along time.
We are bringing Jack home in the morning (24th Australia)
He will be home for the night and Christmas day!
Merry christmas everyone!
Mark, Jess, Jasmine& Jack
There are new photos in the photo section!!
Saturday, December 20, 2003 Hello Everybody,
Thanks for your kind well wishes and thoughts over the Christmas period.
The days is fast approaching that we get to bring Jack home for an overnight visit!
Sunday morning (Australia) we are going to do our 2 night stay in a nice large private room that is away from the PICU. We will spend 2 days/nights with Jack to become comfortable taking care of him without the support around us. We are looking forward to this.. Jack's big sister, Jasmine, will be staying with her grandparents for the first night so Mark and I can be together for the first night.
Jasmine is so excited her brother is coming home, we suspect she doesnt believe it 100%.. however on Christmas eve she know for sure. She is a little mother hen, she was asking us how will be able to tell if Jack wakes up and we cant him cry, we reassured her he will have his monitors on and they will tell us and not to worry. She has learnt alot in the past year!
Jack is unaware of what to is going on, he knows he is coming home as we have told him a million times and so has all the staff. It's is going to be great to be able to wake up on Christmas and watch Jasmine along with Jack open there presents!!! Jack will love his bedroom it is finally finished - it is very colourful. we have moved alot of his toys home as he will be coming home more often now and he can be surrounded by some of his favourite toys at home.
I will update on the 23rd of december on how the 2 day/night stay went.
Take Care
Jessica, Mark, Jasmine & Jack
Friday, December 16, 2003 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
HAPPY BIRTHDAY DADDY - 16th December.
Love you Always Jasmine & Jack xoxoxo
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Friday, December 12, 2003
We have had an eventful few weeks!
Firtly, we have had discussions on how to get Jack home with us, as most of you new this has been a very extremely slow process..
We have great news, not only will Jack will spend Christmas day with us, we should be able to start more day trips and overnight stays at home in the coming weeks.
Jacks eventual "discharge" will be still be some time away as services, funding and a list so long has to be finalised, in the mean time we will start the transition home.
We are so happy about this, we are realising that what we have dreamed and planned for over the past year is finally approaching.
Jack health wise, he is very healthy, a little bit too heavy for himself, so his calories in his feeds have been cut from 30 calories to 9.91, we are hoping he wont put on weight for some time as it has and will continue to affect his muscle strength. He is a pork pie :)
Jack knows if he pokes his tongue out it will draw attention to himself, he pokes it out with style though - he squints his nose, smiles with his teeth and pokes it right out! It's so cute, yet to capture on film LOL
We attended a morning tea a few days ago, for parents of children with Tracheostomies. It was great , we are looking forward to the next meeting.
Christmas is only 13 days away - and counting!
Please drop in and sign Jack's Guestbook!
Thursday, November 27, 2003 Hi all,
Firstly we have put up new pictures of Jack in the photo section.
A few days ago we found out we can get 1 night a week of in home care, this will be by a carer that will be trained up in Jack's care and all can look after him unattended while we sleep. Jack's uncle Nathan is going to be his carer - Which is great for us.
Jack has been coming along well, he is getting into more of a set routine. He is becoming more and more interested in books and likes to help turn the pages.
Jack today waved "Hello" for the first time with full intentions (guess who cried) he really amazes us, as he is a passive boy, and he is very subtle in his ways and sometimes surprises you! He is getting there, he definitely has come along the past few weeks!
We are still trying to organise Christmas Day, the plan is to bring Jack home for a few hours, we are so excited!!
I will update again soon,
Please drop in and sign Jacks guest book! Guestbook!
The Gardellini Family
Friday, November 14, 2003 Hi all,
This week started out hectic on monday, everybody wanted a bit of Jack's time - we are really considering a bedside fee, and a fee everytime they want to touch him!
He thinks it's all good, he loves the attention of course!
Jack is very proud of himself this week as he has learnt the "open - shut -them" song! he thinks its hilarious.
Today Jack's 'aunty' Polly was offering strawberries to all the nurses and mummy shared her strawberry with me, I thought it was totally strange and enjoyed the experience while it lasted.
There was a liver/kidney ultrasound done the other day, and we are pretty sure the kidney stone is gone! not 100% but it looks promising.
Jack has 2 new primary nurses = Rozz and Nicole! hooray! We are happy and thank them for offering to help out.
****Thanks guys****
We would like to thank Jodie and Kirrilly very much for being Jack's primary nurses the past year - we didnt know how much Jack made you two clucky, you both are heavily pregnant!! (hehehe)
That is this weeks events, although I didnt mention all the cuddles, and fun times we had - we had lots!
Take care
Mark, Jess, Jasmine & Mr Jack
XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO
Thursday, November 6, 2003 Hi all,
Last week Jack went to surgery for more ear tubes, it was quick and hopefully he will have less ear infections.
Yesterday, Jack graduated to a bed!!! I was very reluctant as we had become so used to his cot, it was hard to let it go and see him in a bed. We now cant figure out why we left it so long! He looks great in his bed, he can sit up as long as he wants and we can all sit on the bed with him, I even sneaked in a cuddle in bed with him yesterday.
Jack is also trialling the last of the ventilators now, we really hope this model of vent is the one for him, only time will tell.
The weather has been starting to heat up to my detest, I am not a fan of summmer at all!
We have placed new photos of Jack in the photo section, and please dont forget to leave a message in his guestbook!
Mark, Jess, Jasmine & Jack
Saturday, October 25, 2003 Hi everyone,
Firstly I would like to say that Jacky boy is just too cute and we all want to eat him!
He has really came along lately, with himself. He is becoming more aware of his own self - he has a sense of humour (which is at mum's level hehe)and he is starting to become pleased with himself. Too most this is the smallest thing, To us it is so great to see Jack developing and getting to know him. We are teaching him sign language, although he cannot sign to us yet due to his muscle strength he has other means of communicating to us.
Lately he has been mimicking us by chomping his mouth, its very cute and he knows it.
We bought our little man or should I say Boofa home once again on friday.. he was off the vent for 4 hours, and spent 2 hours at home, it was wonderful. He was happy and a little tired by the time we were back in the car to the hospital.
Jack is going to have his second pair of grommets placed on Tuesday morning, the ones he has now have fallen out and he is still having ear infections.. The procedure lasts 10-20 minutes.
Jack weighs 12.78kgs and is 87cm long hehe (big boy)
Oh and to the best part...
Jack has been on the PLV-102 Ventilator, for home use for over a week now and he is doing great on it. There are still a few more ventilators they want to try on him. Its great he is doing so well on this one..
So it shouldnt be too long before they make a descision on this.. Its so frustrating having to wait for all of these things to come together, we are also waiting on a special stroller for him, it has been 2-3 months and It seems forever before it will be approved and then to arrive.
We are also planning on doing our night duty within the hospital in the next few weeks. One of us will be placed in a single room with Jack, in a quite ward away from the ICU to look after him by ourselves, this will make us feel alone like we would be at home. I cant wait, ill have to sneak Jack in bed with me, vent and all (shhhhh!)
Take Care
Mark, Jessica,Jasmine & Jackstar
Sunday, October 19, 2003 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
We would like to pay our last respects to dear little
~ Nicholas Cooper Tregenza ~
8/02/03 - 18/10/03
Who passed away 18th October
Our thoughts are with Tanya and Daniel & family during this time
Nicholas is an Angel, we just couldnt see his wings.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Wednesday, October 8, 2003 Hi Everyone,
Last week, Jack came home for his FIRST visit! It was great to get him out away from the hospital, He was home for around an hour and a bit. We were a little nervous however we were feeling confident as we know how to react if a problem arose.
Jack loved being in the car, he thought it was ants pants, he sat in his car seat (which is almost to small for him) and looked out the window watching things go by, everynow and then he would look over to Mummy just to make sure I was there.
It was a lovely day for Jack to go out, the weather was beautiful.
This is only the beginning in what is to come and It was more than Perfect!
This week, Jack has come down with a bug. I have been sick the past few days, not overly sick just enough to stay away from the hospital.
Jacky has been a little flat, and is not his happy chirpy self. Daddy has been going in everyday to make sure he is behaving himself while Mum stays home with Jasmine and gets over the bug aswell.
Jessica
Friday, October 3, 2003
Jack came home today for his first visit!!
It was fablulous!
Pics are up!
Jessica
Monday, September 15, 2003 Hi all,
What a busy week, Jack as most know celebrated his first Birthday YAY!! He had a blast, it was a really great day!Jacks aunty Natalie stay with us for a few days, she spoiled Jasmine and Jack!
Jack is now 12.5 kg!! he sure is stacking on the weight > FAST.
Jack started trialing a Ventilator for home use a few days ago, however we seem to be having problems with it, he didnt like it and we didnt like the alarms, and among a few other things it has been taken away for now.. They are trying to fix the problem and or try a few different others.. So the Home ventilator progress is starting....
Jack got his special made Bivona trach the day he became ill with RSV (3 weeks ago) and it appears to be the right one for him which is great. Hopefully tomorrow Jack's trachy nurse is going to change it and hopefully it goes well, fingers crossed.
Jack is also coming off the vent again, an hour or two for the past few days, and he thinks it just fabulous as I get to walk around with him, and he gets to look at anything his wants!
Hopefully within the next week or so we can back into the daily outings..
We are also moving into a new house, one we have been waiting for a long to get. Its big enough for Jack and his equipment, this is an enormous weight lifted from us. we can now concentrate on getting our boy out of hospital!
Jacky Boy's Mum
Jacks Birthday!! 10th September (Australia) Happy Birthday Beauiful!!!
You wait! you are going to have the funnest day ever!
Love Mum, Dad & Big Sister!
Tuesday, September 2nd 2003 Hi all,
Jack came down with RSV last week which made him very sick. He is cutting 3 teeth at the moment which didnt help him when he was sick. I spent 3 nights in the hospital with him as he was very upset and just wanted to be held..
It has been 8 days since he came down with RSV and he still is a little flat and not feeling so good, although he had a few beautiful smiles for me yesterday :)
Jacks Birthday is fast approaching! 8 days to be exact on the 10th of September! We are organising an "All Day" party for him, so family and friends can come and see him during the course of the day. What a big day for him it will be!
I almost forgot to mention, Jacks Cuffed Bivona Trachy came in the other week and was placed last Monday (day before he got sick) Time will tell if it is the right trachy for him.
Take care
Jessica, Mark, Jasmine & MR Jack
XOXOXOXOXO
Sunday, August 17, 2003 A big Hello to Family and Friends and anyone who has popped in to check up on Mr Jack!
I appologise for not updating his journal recently..
Jack has been very busy lately with his almost daily outings to the cafeteria within the hospital!
We have been training with his trachy care daily and getting more confident each day.
I am not sure if i mentioned in the past Journal, I have changed Jacks trachy and so has mark, Its the most crucial point of his care and we really feel proud of ourselves to be able to do it (in the company of PICU staff of course!)
Mark and I have been working out our roles when it comes to emergencies, so we can be swift and do it without fear.
Jack is now 10.92kg! Big Heffa???? Yes! he is.. It suits him :)
We are still awaiting for this infamous trachy to arrive, this is a big deal for all of us, as his trachy he has now is about 5mm too long for him and with much care it is being held out 5mm by thick foam to prevent possible lung collaspe, and other problems.. Jack is being Ventilated until this trachy is proved to be the right one for him among other things...
Jacks Birthday is 23 days away!!! How exciting, we are still deciding what we are going to do or his birthday we are hoping for 2-3 hours home visit, like i said we are hoping, we will know closer to the day and alot of things need to be sorted out.
Thats wraps up the past few weeks on Mr Jack!
Jack sends a big Smile to his Poppa Jim for the lovely Musical Caterpillar he got him, He just adores it!
Thanks Pop!
Missing you all, Please Sign his Guestbook :D
Jessica, Mark, Jasmine & Jackely
xoxoxoxoxoxoxoxoxoxo
Wednesday, July 30, 2003 ~ Happy Birthday! to my Beautiful big sister Jasmine for Friday ~
She will be 5 years old...
Hi everyone!
Its been a little while since we have updated!
Jack is still Ventilated, and he is starting off with
2x 1 1/2 hours during the day - he is coping very well.
We have found out he had Influenza type A a few weeks ago and most probaly contributed to his need for the Vent.
His second top tooth still hasnt cut through,although I am sure it wont be long now.
Jack had his first hair cut a week ago, we lopped off a bit and he is looking Very handsome!
We had a meeting with all concerned last week regarding where we are at and where we are heading.. It still will be a while before we know exactly what support Jack will need when he comes home and i guess we will go on from there.
We are continuing to do our Tracheostomy education and we are awaiting for the special Trachy to come in, so we can see if it suits him etc. We then should be able to start Trachy Changes.
OH! almost forgot to mention... Jack went on an excursion the other day to the cafeteria with Mum, Dad & nurse Jarred, He just loved it - he had so much to look at and enjoyed sitting in his pram watching us have a cup of coffee! We then headed down to the Creche to pick up his big sister Jasmine to keep him company for the rest of his walk..
Jack has been seen by the senior physio in regards to full leg splints as he has contractures in his knees. What type of casts that will be used is still being decided.
And Jack has been happy and enjoying some new toys, spending time on the floor, in his chair and in his pram..
Jack's 1st birthday is coming up in 41 days! (10th Sept)
Also celebrating there 1st birthday a few days later is Benjamin from Houston,TX. YAY!! these boys are going to be stars!!
Take Care
Jess, Mark, Jasmine & Jack!
Friday, July 18, 2003 Hi Everyone,
Jack was put on the Ventilator on thursday as he has needed and higher 02 requirement and his x-ray showed he wasn't ventilating the lower part of his lungs well. He also didnt appear to be himself and we are not sure if he has a low grade bug or not, so for now he being Ventilated and he hasnt had anymore scary desatting episodes which is great and he is much happier and is his old self!
I Finally got to see him today after a very long 9 day stay away from him (I was sick) It was so good to cuddle my lil boofa boy! he has grown within a week!! He was so happy to see his mummy, and mummy cried with happines!
(dad took pics!)
Jack's has one of his top teeth come through, its too cute. and the other will be comning through real soon.
~ Jack would like to say THANK YOU to the lovely nurses
Cathy, Jen & Sue for bringing him back a toy stuffed giraffe all the way from Boston, USA. It is a lovely gift, thankyou..
We have a Meeting next week with all concerned to dicuss a dicharge plan.
Take Care
Jessica, Mark, Jasmine and Jack!
xxx
Thursday, July 10, 2003 Hi all,
Jack has had an eventful few weeks...
Jack has been able to come off the cpap support whilst he is awake.. he goes on only when he is sleeping, he is in a little of 02 during the day.
He is also getting his 2 front teeth, they havent exactly cut through yet although you can feel them there.
At the start of this week, Jack has had a few scary episodes with desatting - down to 50hich is very low.
However he has been able to recover reasonably well.
We all seem to think its secretion related.. The doctors have ordered a foam cuffed Tracheostomy hoping it will help stop the secretions going past the trachy and into his lungs..
Today they put in a temporary cuffed tracheostomy whilst the foam cuffed is on order. The temporary trachy - there needed to be some adjustments made to suit Jacks airway etc.
Jack also had a renal ultrasound on wednesday and they found a 3mm Kidney stone. We are now waiting to hear from the renal team to see what they have decided on how to treat it.
Jack has started to gain more strength in his arms especially when reaching upright he now can extended his whole arms upright with very good co ordination, this has improved alot more over the past few days..
He latest interest is Sun glasses! he is just fascinated by them.. not to sure if he likes to try them on, lil cutey..
And his favourite song is "If your Happy and you know it"
He loves the Clapping part the best..(of Course)....the smiles are too cute!
He also is 9.9kg just a smidged away from the 10kg marked..
We have put up some new photos of Jack in the photos area...
Take Care
Jesica, Mark, Jasmine, Jack :)
Wednesday, June 25, 2003 Hi everyone!
What a big week Jack has had!
Thursday : Weaned from the Ventilator back onto CPAP.
Friday: Came off the ventilator for 4 hours with a little Oxygen.
Saturday: Came of the Venilator for 6 hours with a little 0xygen.
Sunday - wednesday: He has been coming off mid mornings and staying off all day until he goes to sleep at night!
Jack seems to be coping very well. Clever boy!
He is still aspirating from oral secretions past the trachy tube and the team is working on a solutions for this...
Also we are planning a meeting for next week or two for a .... DISHARGE PLAN!!!! YAY!!
This as you would all know will take time, we need to move house and organise some sort of home help as we have no support at all and we will need it.
We need to be fully trained in Jacks care, physio, trachy care, CPR, and use of the equipment that he will come home with.
So we are working towards the goal to get him home..
We have been meeting with the trachy nurse everyday and learning everything bit by bit.
Hopefully he will be home within the next 4 months hopefully as these things take time........
There are new pics of jack so go and have a look!
Jess, Mark, Jasmine & Mr Jack!!!
please sign Jack's guestbook
Wednesday, June 18, 2003 Hi Everyone...
Mr Jack is doing much better now. He has had another trach change to a size bigger a 4.5 shiley. The leak around the tracheostomy is much better than last week. Hopefully in the next few days they will wean him off the Ventilator back onto CPAP.
He is much HAPPIER now, and today all I recieved was Smiles after Smiles!! :-) and little Giggles!
Jack was also into smacking mummy in the face as he was excited to see me!
The Physios are also trying to get Jack back to where his was before the operation as he is a little weaker, which is to be expected. He will get there...
Jack will be celebrating his First Birthday in hospital in less then 11 weeks time. I cannot belive how things have gone so quickly and yet how he has never come home from hospital. He Will in time when he is ready. I am hoping he will come home by Christmas! if not living home, maybe a day visit!!
I say it again and again...... Jack really is such a beautiful and clever boy! We really admire his tolerance and the will he has - He is a fighter and a very loving boy! He is also clever in how to get attention from all those nurses as they have to "work" to get a smile!!
Cheeky Boy you are Jacky!!
Take Care Everyone,
Jess, Mark, Jasmine and Mr Jack!
xoxoxox
Thursday, June 12, 2003 Hi all,
Jack's Left lobe has collapsed yesterday, he is in more 02 to keep his sats up. getting 2 hourly chest physio and lots of love. He had his first Trach change today which all went smoothly. He went up a size to try and get rid of the leak around it. Jack also had his bath today in 9 days, he just loved it!
Hopefully when he recovers they will start to try and wean him off the ventilator.
He got to have a cuddle with Mum today- he loved it (so did mum)
~Take Care~
The Gardellini Family..
PLEASE SIGN JACKS GUESTBOOK
Monday, June 9, 2003 10pm Hi all,
Jack is feeling better then he did last week, he is still ventilated however they are slowly turning down hte pressures. Hopefully tomorrow he will have his first trach change and it all goes smoothly, i cannot wait to hold him nor can daddy.
OH! I forgot to mention, on friday Jack got his first Toothy Peg!! and today he got his second toothy peg...
He has been in the wars the past week, A trachy, Grommets and 2 teeth... and he has done so well, he tolerated all of this very well. He is our brave boy!
Thankyou for all the well wishes...
Jessica, Mark, Jasmine & Jack
PLEASE SIGN THE GUESTBOOK
Friday, June 6, 2003 6.30pm Hi All,
Jack is much better now, On Wednesday night Jack was taken back to theatre as he ws still bleeding, the plasme and vitamin K didnt help as much to stop it.
But it was a hurdle, and we hope he will speed up his recovery now.
They tried to take him off the Ventilator today and put him back on the CPAP, but Jack didnt last more then 10 minutes.. his Trach tube is a 3.5 shiley and he has a big leak around it so hopefully that is why his couldnt tolerate CPAP as he may not be getting the pressure he normally gets. I was told today he will most probably get a 4.0 trach size when he has his first trach change due around Tuesday or Wendesday.
Big Thankyou to all the staff in PICU for your hugs and support over the past few days...
Special Thankyous and Hugs to:
Leanne, Vicki, Gail, Lexi, Dean, Nicole, Tracee and Kirrily for taking special Care of our boy..
And again thankyou to Salli, You are a good friend.
Jack you are such a good boy, you tolerate everything that is done to you...We love you so much!
Jess, Mark, Jasmine & Jack!
Please sign Jacks Guestbook.........
Wednesday, June 4, 2003 4pm Hi all,
Jack had his Tracheostomy and grommets placed yesterday.
The operation went well..However Jack has been bleeding for 28 hours post op.. He is having a Plasma transfusion and a Vitamin K shot to help it clot. Hopefully it will work. We should know within the next few hours.
The doctors are trying to try this so they dont have to take him back to theatre.
He is still ventilated, he is triggering his own breaths so that is a good sign for now.
He is also sedated. His face looks so CUTE! he has a lil button nose!
Thank you for all your well wishes..
Big (((((HUGS))))) to Salli!
I will post back in the next day or so..
Jessica
Sunday, May 25, 2003 5:06 AM CDT Hi Everyone!
It has been awhile since I have last updated Jack's journal. Since we had the meeting with the doctors and the descision to trach him, We all have been trying Benzhexol to dry up the secretions. On the 12th of May Jack came off CPAP for 9 hours, Which surprised everyone!! What a Clever Boy! After 9 hours it was 11pm and they decided to put him back on CPAP to give him a few hours rest before trialing him him again the next day. Well the next day he had the secretion probleam again. After a few days of having trouble getting him off due to too many secretions, the docs double his dose. With this the secretions became very thick and blocked his Nasal Pharyngeal Tube and it needed to be changed. The medication was ceased. Mark and I decided we wanted to make a descision whether we keep on trying with meds and try to get him home with just a CPAP mask or to go ahead with the Tracheostomy.
Yesterday we had a very good discussion with Jack's Primary PICU doctor and he gave us all our options and we decided what we wanted to do.
We have decided to go ahead with the Tracheostomy now.
We feel this will give Jack freedom from the NP tube up his nose and any support he may require wont be in his face. and he will be more mobile, WATCH OUT WORLD!
We must admit he will miss his tube as he holds onto it as he sucks his thumb!!! he also wont be able to get attention easily from the nurses as he pulls it and they come running!!!
We are not sure when the procedure will be, probaly within the next week or 2.
So we will keep you posted when it is going to happen!
Jack now weighs 8.88kgs and he is getting more and more stronger! Dad got a few wacks in the face today, and a pull of the hair! He also had plenty to say when we arrived today.
We are all well and look forward from hearing from everybody soon..
Kisses and Hug's
Jess, Mark, Jasmine and Jack! (pixie too!)
Please sign Jack's Guestbook.
Friday, May 9, 2003 1:01 AM CDT Hello everyone,
This week has been busy! Jack has started on medication to help dry up some of secretions.
We had meeting with all his Doctor's today and we have all agreed Jack needs a tracheostomy. This was a very hard decision mark and I had to make. This has been on the cards for a while now, We all were hoping he could get bye without one. Jack was trialed off the CPAP this week and he found it very hard too breath as he had so many secretions in his mouth and throat as he cannot swallow.
We are hoping that with a Tracheostomy, Jack will be able to breath a little on his own. We hope it is for the better. Only time will tell.
This will give Jack the Freedom to have his face clear of those tapes! and the NP tube!
They are going to trial Jack off the CPAP next week after the medication should have started to take effect. (This medication may help dry up his secretions)
They must try this as there is a slight chance it may work, although we are not holding much hope.
Overall Jack is still growing he is 8.37kgs and still growing! He has a new chair to sit in and it is much more comfortable and it supports him a lot better then the previous one.
Jack Celebrated his 200th Day in the ICU yesyterday!
They had made a big banner for him which was hung on the wall! This is 155 days longer than he spent in the Neonatal ICU. Lets hope he doesnt make it to 400 days!
So this is a news this week I will keep everyone posted with more news soon.
Jessica, Mark, Jasmine and Jack!
Sunday, May 4, 2003 6pm Hi Everyone!
Jack Went outside for the first time today!
He just loved it! We all had the Best time!
A BIG THANK YOU!!! to Nurse Sue for making it all happen!! :-)
Thank you also to Nurse Lexi for coming with us!
And Thank you to Dr Yung for allowing us take our boy outside for the first time.
We had all Blast!
Go to the Photo section to see Picture's of his Outing
Jessica, Mark, Jasmine and Jack!
Sunday, April 20, 2003 10:00 AM CDT Happy Easter to all!
Well, Jack is doing well! He had a Happy Easter!
He is gaining more head control, he can hold his head for a little bit. He is getting there, His legs are getting stronger and he can lift them and kick around with his nappy on now, before it was easier for him to kick without his nappy on. He also is starting to grasp toys with both hands and naturally pulls them up to his mouth. He is a thumb sucker! (wonder where he got this from?) He is vocalising louder the past few days. Which great as it may mean he is strong enough to push air up past his vocal cords. He is a chatter box!
Mark and I are having a meeting with Doctors sometime this week.... I hope they have a plan of action to discuss...
We are going to discuss the Tracheostomny Issue. Whether too or wait a little longer. It will be good to get a feel of what they think.
I have started corresponding with other parents of boy's with XMTM, it is good to know your not alone.
Thankyou to everyone for there well wishes for Jack.
Jessica
Please sign Jack's guest book
Jack was born at 32 weeks, due to Polyhydramnios.
When he was born he was too weak to breath at all and was placed on a Ventilator to keep him alive. He was very floppy and could barely move his arms. He was diagnosed at 10 days with XMTM after having a Muscle Biopsy. Then this was later confirmed through Genectic testing. When we were told what to expect of Jack our hearts broke. But we found hope in Jack as
from after a few days after he was born Jack started to improve with his limb movements. When he was 5 weeks old they weaned off the ventilator onto CPAP. We tried Jack off the CPAP for small periods of time and he seemed to cope well, but he failed to gain weight. So he is on CPAP all the time.When Jack was 4 months old he had Nissans Fundoplication and a Gastrostomy Button placed. This is a plastic button that is placed in his stomach for children who cannot not be fed orally longterm. In jack's case he cant swallow anything and it is nicer it less invasive than a NG tube. He hasn't had a Tracheostomy as yet as the doctors are hoping he will be able to breath on his own whilst he is awake and be on the CPAP mask when he is asleep. We are all hoping he will be well enough to come home soon..
Jack has come along way since he was born. We often say "Jack has achieved alot more than some people do there whole lives"
He is a busy little Boy. He has all the PICU nurses wrapped around his finger. He is always happy even though he is in hospital, he doesn't know any different.
People ask how can we leave Jack each day in the hospital?
It does break your heart, but you cope. We Know Jack isn't ready to come home yet.
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