Re: To Everyone!
- Janice, I am so sorry to hear that your sweet, little boy is in
pain. That is awful! Are they planning to replace to g-tube soon?
Does he get any type of acid-reducing medication? Jacob is on
Pepcid (used to be on Zantac, but his liver enzyme panels were
always too high), and it seems to work really well for him. I am
with Connie on the lung issue - it definitely sounds as though he
may have RSV? Please keep us updated as you are able to do so.
We are thinking of and praying for you, Alistair, the family and,
especially, sweet Matthew!
--- In Myotubular_Myopathy@yahoogroups.com, "Wright, Janice (J)"
> Hi Jessica and everyone,seems
> Just returned from the Hospital. Matthew is in a lot of pain. It
> that the new G Tube we put in in December has been faulty from day1. It
> is extremely painful for him and he cries if we touch it. He is onnil
> per "mouth" and is on a drip. They think it is either a pepticulcer or
> some form of gastritis. Along with this, we have lost 3/4 of theone
> lung. The secretions are very creamy. We have gone up with thepressures
> but he doesn't seem to be needing more O2 (on about 30%) which isfairly
> normal for him. He is very pale and it is sad to see him like this.him
> Other than the pain, he is his usual self trying to talk. I asked
> how he was and he replied "fine". I have had to teach him tosay "sick"!
> His nurse last night taught him to reply "perfect", so I guess weneed
> to work on Matthew's understanding of what these words mean! It isawake
> amazing how quickly they turn - just this morning Matthew has been
> since 4h30 watching Lilo and Stitch, I know this as I woke uplistening
> to Elvis!hospital
> I will keep you all updated as to how he is doing. We have again
> organised his home nurses to work on him in the Hospital as the
> staff are not equipped to look after him - they don't have aPaediatric
> ICU and he is in a normal paediatric ward with normal ward/staffnurses.
> When we admitted him, they had an hours notice and there was no O2own!
> tubing or suction tubing. Fortunately we remembered to bring our
> By the way Jessica, Alistair asked me to tell you that he was so
> inspired with news of your fish tank that he went and bought 4
> (2 red and 2 blue) we have named the reds Jessie and Jack.forward to
> Keep well all.
> -----Original Message-----
> From: Jessica Juckers [mailto:jessmark@b...]
> Sent: 04 March 2004 12:58
> To: Myotubular Myopathy@yahoogroups.com
> Subject: [Myotubular_Myopathy] To Everyone!
> Hi Guys,
> Firstly, Welcome Tina! I am glad you found this group; I look
> hearing all about your beautiful son when you have time to reply.I have
> a son, Jack who is 18 months old (16 corrected) Jack has a Trach,is
> ventilated with hours off in the day and he has a G-tube. We livein
> Australia, and I also have a 5 year princess called Jasmine.Jessica
> Sorry I have so terrible with my replies etc, we have been SO busy
> Jack home!! He has had every single kind of therapist visit us athome
> the past week! It has taken up a lot of time, and we have beenhaving a
> lot of "family time", thus keeping away from the computer a lot.The
> weather has not been so kind on us here either, it's been around40C
> which amounts to (108-110, I think) the past week, and we have beensince
> trying to keep as cool as we can.
> Jack has been doing great at home, he has learnt some funny habits
> being home again, it amazes me how quick he can pick up on thingsand
> figure out the "best thing" for him, bless his cotton socks!computer
> Today, Jack got a switch adapted computer mouse, he sits at my
> uses a switch to manipulate computer programs to help him learn, hebeing a
> didn't enjoy his OT's here today, they are very lovely but Jack,
> mummies boy, didn't take well to them showing him how to dothings. He
> just cried and cried at them, I think he didn't like them being soso,
> close, he is fine and all chatty at a distance with them, but not
> close. He is going through a faze we think, as he is very shy topeople
> when I am holding him and will push anyone away from me and givethe
> best dirty looks with an amazing frown.being a
> I have been having trouble getting away from jack as well, he is
> mummies boy big time, and just cries when left alone with dad mosthis
> times. The latest thing the past 2 days, is trying to get Jack in
> bedroom for sleeping is a challenge, he just cries and cries. Welet him
> fall asleep on his play mat on the floor and put him in his bedafter he
> was asleep, all these little things I went through with Jasmine isnow
> coming about with Jack, and he is very determined, like his sister.he LTV
> Tomorrow Jack is going into hospital for 2 days/2nights he needs
> tweaked again, and they can get it right before we bring himhome.. We
> rushed out of there so quick the other week to get him home, theyhad
> really only watched him for a few day/nights and we have somesettings
> they need slight adjustment. They also are thinking about having ajack
> setting for the day and a setting for the night, as in the day,
> doesn't need the setting he is on.subject=Unsubscr
> I must go and do house chores..
> I have missed speaking to you all, I hope everyone is well.
> Take care
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- Jessica, Sounds like Jack is going through the terrible two's a little
early. lol Wow you sure are busy with all the ppl coming in to see Jack.
I hope they get things done quickly and he is back home again real soon.
Let us know. Sure do love hearing how Jack is doing. take care pat