Posted by Carleen on 3/20/2008, 6:51 pm, in reply to "Re: PRS"
205.188.116.9
--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--
: Linda,
: Thankyou for your response and is helpful to
: know that we are not alone. Please to know
: that you little one is doing so well.
: My daughter visited the medical team and Zoe
: is now having her pallate operation on the
: 9th of May. She will be barely 6 months.
: They have changed her formula to a very high
: calorie one in order for her to gain more
: weight rapidly. The will be doing some
: examinantion through her ears to check
: wether the food is going directly to the
: stomach rather going somewhere in the lungs.
: So far so good...she was told that the child
: development will automatically be slower
: that would be because of the trauma that she
: has gone through. We are concern of the
: trauma on her (brain)white matter and what
: is going to be the outcome of that. But I
: think positive as the brain is a very
: complicated organ and we normally use only
: ten percent of it. Doctors are very vague
: and they do not want to comit themselves
: with an answer. When you said that the
: doctors were not very optimistic about your
: baby's situation, what did they tell
: you..surely that was not supportive. I
: admire your courage and your positivity.
: Good for you and your baby. You will both
: make it and will look back at this..and the
: love and care will be profound.
: 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!
:
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My daughter was a preemie and was trached when she was 45 minutes old. She was hospitalized until she was 68 days old and then came home at 4 lbs, 12 ounces, with a trach and g-tube. We are fortunate that our insurance provided nurses and I was able to recruit some from the NICU to work for the agency. We started with 8 hours per day on a random schedule but, after a near death, CPR incident following vaccinations, we came back home with 23 hours a day of nursing. It was truly a life saver. We were able to keep our daughter home, allow me to function (I have diabetes), and allow my husband to continue working. I am happy to say that after a rather tumultuous 19 months, the trach came out, the g tube came out just before her 4th birthday, and I now have a perfectly "typical" 5 year old who will be starting kindergarten in September. Hang in there. It is well worth the effort for the blessing you have in your grandchild.
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