Trach Decision

I have been a member of this site for about 4 months now. I have found it so comforting to see success stories as well as advice to other worried parents. My daughter was born at 29 weeks and was doing very well until the week before she turned 1 month old. A blood clot was discovered as a result of her picc line. She was treated with an anticoagulant but with no success. She is now 4 months old and the journey with SVC syndrome has been tumultuous to say the least. In these 3 months she as defied many odds. This week we were presented with putting in a trach and possible feeding tube as she is still needing ventilation. Of course the doctors presented everything as a benefit for Jenay but I am not completely sold. Please provide me with advice from your experiences. This is one decision I don't want to make.

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Hello,
Sorry you are going through this with you baby girl. I have a question for you, is her ventilator settings high? Do you think she will be relieved by the trach? is she taking a bottle at all? This is a very hard decision for anyone..

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Right now her vent settings are mid range and they are slowly weening them down. However she is on her 2nd round of a 10 day steroid treatment. Prior to that her vent settings were almost at the max. She has never been able to attempt bottle feeding due to having a vent tube. However, we believe in our heart she will have no problem with it because she has always sucked on her breathing tube for comfort and she is managing her saliva. I don't see a lot of excessive drooling etc.

I am not sure how relieved she will be by the trach, however; her lungs still is in need of vent support and will be for a while longer. If we have to do it at least we can work on the bottle feeding etc so she can be more like a "normal" child. I just pray that we make the right decision.

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hi JLSMom - it is probably the best to ask your doctors to get a second opinion, and a third.
working as PT in nicu for many years, i have seen that many times small preemies do need assistance to get power to overcome
additional problems. the ventilation thru a tracheostomy (that's their suggestion?) and also the feeding tube make life easier for your daughter, and than she can get stronger, does not use much energy on different activities, just "only" to concentrate to get healthy and to grow. she needs time, some period of calm and tranquility, just to be with you, having you sitting close to her and nibbling on a pacifier. a time-out in fighting.....
so i am sure it will be a benefit to her, just to have a rest after those 3 months that you all had a hard time. i do not have any experience with svc (is it the sup. vena-cava that had a clot?)
i am sure your daughter (and you!) have a lot of strength and will surprise everybody, like preemies love to do! but it is not easy,
so to give her temporarily more support sounds really a good idea to me, but still - ask for more professional advice - did you get the opinion of a respiratory/pulmonary specialist?
all the best

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i just saw this thread:
http://www.inspire.com/groups/preemie/discussion/picc-line-6/
vibrant light (6th reply) about svcs!
hope this helps (((-:

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Thanks, we are certainly weighing the pros and cons and asking a lot of questions. I will definitely check out the thread on SVC. The clot is in her superior vena cava vein.

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When we were looking at a trach, we asked to have a nurse come and give us the first part of the trach care education for caregivers, so we would have a better idea what it meant for day-to-day life. We found this useful, though it's only about part of the whole decision. Past that I don't know enough to say, but definitely agree with getting opinions from several doctors -- sometimes you just find one who has a good rapport.

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Just wanted to give an update. We decided to go with the surgery after days of contemplation and questioning of the medical professionals. She is scheduled for surgery on Thursday. Please keep us in your thoghts and prayers for a successful surgery and strength to make it through another NICU hurdle. Thanks to all of you that responded to my post.

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Will be thinking of you, and wishing your daughter well as she goes through this.

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