25 weeker w/ Epidermolysis bullosa... - page 2

I'll try to make this all as brief as possible... I've been taking cary of this baby all week who was born at 25 2/7 weeks. Soon after birth, it was suspected that he had epidermolysis bullosa - the... Read More

  1. by   RainDreamer
    Quote from subee
    Its secondary to the renal failure - one form of the failure is the inability to excrete the potassium ion. Patients of all ages with renal failure will experience hyperkalemia. Review your physiology text section on the renal tubules. This is the source of the problem.
    Ohh ok, that makes sense. Thanks for the info. I wasn't even sure where to get started looking for that information .... as this poor baby has so many problems

    Thanks, subee
  2. by   LilPeanut
    I've seen the opposite issue with some middle-eastern families, they typically hold great importance on the overall function and future of the child.

    Just from something that happened here recently, I would wonder how graphic and detailed the docs have been with the parents. If they truly understand what this child is going through etc.

    In another NICU in town, the NP was telling me about a kid they had the ethics committee involved with etc. because the kid had hydroceph and parents didn't want a shunt. The NP sat down, drew pictures, showed CTs and really explained it to the mom until she truly understood, not just was saying she understood.

    During this, she found all sorts of misconceptions by the mom (like, the child would need a shunt revision every 1-2 months, that they would forever have a wire hanging out of their brain to drain the fluid, that they could take the child home, treat the "swelling" and then do the surgery once the "swelling" had gone down.) The language and cultural barrier could have caused that baby to die. Or in your case, not to die immediately.

    Once mom really understood what was going on in the above case, she did consent to the shunt, btw.
  3. by   Sweeper933
    I wanted to give thanks to all of you who offered your support/advice. Last week was a rather long and tiring one. Long story short, his condition continued to worsen through the end of the week / during the weekend. We kept going up on the insulin drip (along w/ his dextrose amounts) to try and keep up w/ his rising K+ (it got over 9 at one point!). Our docs were trying to avoid transfusing him, but when his hct got to about 15, they gave him some PRBC through his UAC (there was NO WAY we were going to get a PIV in him...). by this past Sunday (yesterday) his MAPs were in the low teens, despite being way fluid overloaded... and parents finally gave the ok to take him off support. According to the docs, it took him less than 5 min to pass once the vent was stopped. Very sad. His skin on his extremities was almost non-existent at this point - no matter what we did, it just kept getting worse. That's just the nature of the disease I guess... Thanks again for all of your support!
  4. by   EricJRN
    Thanks for the update. Sounds like it was some week, but hopefully now there can be some peace for him and his family.
  5. by   traumaRUs
    Peace to this precious child and to his equally precious caregivers!
  6. by   NotReady4PrimeTime
    Quote from traumaRUs
    Peace to this precious child and to his equally precious caregivers!
    Ditto. {{{{{{{{{{HUG}}}}}}}}}}
  7. by   prmenrs
    Please know deep in your heart and brain that you did as much as you could for that baby and his family. This little guy will "stay" w/you for a while. Just let him. When it's time, ok to let go!

    Best wishes to you and your colleagues. A job well done.

  8. by   nicunurse2004
    i took care of a 35 weeker for months With EB. We used micropore dressings because it did not stick to his skin but only stuck to it self. I cant remember the company name or anyother names for it but will look that up and post for you when i find it out. We also gave the baby baths in the tub or even just a sponge bath to errode the dead skin every few days and as blisters formed we would clean them with alcohol and pop them with a sterile needle like a tb needle. We would keep him highly medicated. we also used blankets as diapers since normal diapers would stick to his skin and cause more break down. My advise for you is to make sure you take care of your self and take time off from having him/her as your patient all the time. I know that I got very exhausted when takeing care of him. His case was not one of the worst cases. From what i leared there are 3 major types of this disease with each type having i beleive 3 subtypes which rank the severity in each main type. My little one finally went home with lots of home care, I recently learned that his father had this as a child and now only gets blisters everynow and again and the mother couldn't tell that the father had this disease, of course there is more to the story. From what i understand the little guy is doing well it has been about 6 or 7 months since we discharged him. I hope this helps you out.
  9. by   RainDreamer
    (((((HUGS))))) Peace to him, his family, and you and the others that took such good care of him.
  10. by   mauigal
    God bless you for all your hard work! I have taken care of 2 babies like this both 23 weekers and it was the stuff nightmares are made of!:uhoh21: We did everthing you are doing and the burn unit agreed with our plan of care. Both died and it was BAD! But I have to say it was not from sepsis, renal failure and cardiac issues were the cause.
    HHumm? It is not interesting that in 17 years of level 3 NICU I have never heard of an infant born to first cousins that was just able to go from L&D to the regular newborn nsy. We had this discussion @ work last week with some newborn nsy RN's. They said they don't get any babies born to first cousins. they only knew about the babies due to Mom being a Pt on the floor. Does this just happen in the US? Or do these infant fair better outside the USA? Anybody know? It seems to work for other countries for 1000's of years
  11. by   LilPeanut
    I would guess that the many of them are very closed lipped about their status as first cousins and because there are no issues with the pregnancy or baby, there's no need for anyone to know that information, so they don't share.

    From what I've seen written about it and genetics, it doesn't seem like it would be an issue, unless the family is a carrier for genetic diseases, but you have that risk with anyone really, if your spouse just happens to have the same sorts of recessive genes as you.