Posted by andree on 1/26/2008, 4:10 pm, in reply to "Re: PRS"
83.190.77.169
--Previous Message--
: hello everyone,
: I forgot to say that I live in Italy and my
: daughter lives in London..I go to visit and
: keep in contact via telephone. I wish I was
: close by so that I could give her a hand and
: bond with Zoe..it is a real pity that there
: is this distance between us.
: It is important to know if anyone of you had
: a nurse or some form of help during the day
: or night during the trach period in order to
: have a break. In England they have some sort
: of system that the region gives a pediatric
: nurse once a week for four hours and a
: babysitting hospice for a full day also
: once a week. But my daughter tells me that
: she is so exhausted and having anxiety
: attacks. Has anyone of you gone through this
: experience?
: Thankyou
: andree
:
:
:
: --Previous Message--
: Congrats on your new granddaughter. I
: didn't
: have a trach to deal with as my son had a
: distraction early on so I can't really help
: you there. However, my son had very low
: muscle tone and was late holding his head
: and didn't roll until he was 10 mos. He was
: sitting independently at 11 mos. Weight
: bearing came at about 16 mos. He was born
: June 2005 and didn't start crawling until
: this past October and is now finally
: walking. This isn't meant to bring you
: down but hopefully uplift you in that if
: your granddaughter doesn't do things when
: others feel is apppropriate that try not to
: dwell on it (easier said than done). My son
: had 9 surgeries in the first year and half
: and at times it felt like he would never get
: off a g-tube, crawl, walk etc but now I am
: just thrilled and so very proud of what he
: has accomplished given what he had to deal
: with. Your granddaughter will amaze you
: with each little accomplishment she makes
: and you will learn not to take anything for
: granted. I remember doctors being "not
: so optimistic" on several occassions
: but one thing that kept me positive after
: licking my wounds was thinking, oh yea-wait
: till he shows you how wrong you were!!!)
:
: After much rambling... please keep in mind
: that things will improve, your granddauther
: (and your daughter) will get stronger and
: your granddaughter will be more loved by
: many people than you ever thaught possible
: as you will learn that EVERYONE loves to
: rally for those who really need it!
:
: One last note, you may be able to get an o2
: sat monitor that would alarm if the trach
: were to come out and oxygen levels were to
: drop.
:
: Take Care,
: Linda
:
: --Previous Message--
: Andree -- please post your message again as
: a
: new message. I'm afraid that folks won't
: see this response if they aren't following
: this thread, and I want you to get as many
: answers as possible. It sounds like your
: family has been through a lot. There will
: be ups and downs, but take a deep breath and
: relax. This is a hard thing your family is
: facing, but you will all get through it. We
: have all been where you are, and it does get
: easier. There will be days hwen you and
: your daughter will not believe that it gets
: easier, but it will. There is a range of
: experience among the folks on this website,
: and there will be people to help and
: encourage every step of the way.
:
: Congratulations on the little one!
:
:
: My daughter who is suffering from severe depression after the traumatic birth of baby Zoe, had to put her in a hospice type that deals with children with special needs, (BABIES WITH TRACHI)
Today she was called to tell her that the baby had stopped breathing and that a nurse in the hospice had to performed an ermergency trach change that saved her life.. she was rushed to the hospital and found out that the tube of the track was blocked with mucus and the baby did not has sufficient air to breathe.
Isn't there another way to deal with this sort of emergency should one be alone with the baby.
It is very worrying that one can be faced with this problem and goes in a panic and of course it needs two people to change a trach.
Zoe is now in the hospital with yet again another lung infection and is on antibiaotics.
I just wonder as to wether she is having the right care.
Andree
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