Again, nothing really major to tell. Still working on weaning her nitric oxide down and getting her dopamine (controlling her blood pressure) down. Her oxygen saturation has been great, and they have weaned her oxgyen down more to 55%, so that is good news. She is still on the really high vent settings it helps keep her avaialble aveoli popped open so that she can stay oxgenated well, since her main problem is not having enough aveoli. Still on the antibiotics for the UTI. The anitibiotics for the previous infections with the trach have been stopped but she will remain on an every other day dose just to try and prevent any infections from flaring up.
Other than that we wait!! Some people have asked me questions about the transplant as far as how things work, and "the plan". So for those intersted I thought I would give a quick run down of what will happen.
Most people know that for someone to donate organs, they have to be declared brain dead, and then a family member must consent to donating organs. So the donor will be kept on a ventilator until consent is given, and the organs can be removed. Once the consent has been given, a coordinator at the donor hospital will put the donor's height, blood type, age and other inforamtion into the UNOS database. Then it will match them up with people waiting for transplant. Matches will be based on chest size, height, and blood type O for Elizabeth. Elizabeth is listed as accepting offers from 2000 miles away, so her lungs could come from anywhere in the US. The first person on the list will be made an offer, we do not know where on the list Elizabeth is listed, but from what I have been told she is the only child in her age group/size listed here at Texas and no one is listed at St Louis right now, so her chances of being high on the list are good. In our case, our Transplant Coordinator will be contacted, and they will pass the information of the potential organ on to the surgeons and pulmonoloigst who will determine if the organ seems like a good match and they will also be sure that Elizabeth is in a good place for transplant. If all is looks good they will accept the offer. Then the coordinator will contact Elizaebth's nurse to start getting her prepped for surgery, we will be contacted at that time either by the pager, by phone, or most likely the nurse will tell us since we are always here :) Then one of the surgeons from here will go to the donor hospital (depending on location he will be driven/flown). Once the Surgeon visualizes the lungs and removes them he will determine if they are sill in good shape and working properly. At the same time Elizabeth will be taken to the OR and continue to be prepped for surgery. ~~~IF at any point even once the lungs are brought back here to Texas, it is determined that they functioning of donor lungs have started to decline or they just dont seem to be right anymore the transplant can and will be canceled. So we have to be prepared for these "dry-runs". It will be devastating but at the same time we would much rather know that she is getting good lungs instead of chancing transplant with some that may not be the best. ~~~ So once the lungs are here and Elizabeth is ready the transplant surgery will begin. Time is extremely important during alll of this the lungs have to harvested and transplanted within a certain timeframe usually less than 6 hours. And the surgery itself is lengthy. We have been told that waiting is so difficult and then as soon as she gets an offer, things go so fast that we will be in a bit of shock. After surgery she will be brought back to the PICU to recover, she will have 2 nurses for the first 24 hours to care for her, and then 1 nurse assigned just to her until she is stable. The goal will be to get her off of the ventilator as soon as possible so that she can start using her new lungs, and the hope in our case is that she can get rid of her trach as soon as possble as well. She may come out of surgery without it if all goes well and just have a regular vent tube down her throat. But we wont know until the surgery. So that may be too much info for most of you, but I just wanted to be sure everyone had a good idea of what to expect. You can find more info on the UNOS website an Texas Childrens website.
Tonight I want to ask for prayers and thoughts to all of the families of organ donors. As I sit here waiting for Elizabeth's chance at life, I cant help but feel a little guilty knowing that another parent is being faced with the death of their child. I hope and pray that who ever Elizaebth's donor is, does not suffer, and has experieced love beyond measure in their short life. I hope that the family can find comfort in knowing that their baby will give my baby a chance at life, she will always be loved and cared for by MANY. I also ask that each of you take the time to think about and discuss organ donation with your families and friends, it is not an easy decision but if your wishes are known it will make it easier for them. You can sign your driver's licesne or register online. You could save up to 8 lives by donating, you could save someone the same way we are hoping someone saves Elizabeth.
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