Friday, May 27, 2011

Plan for Sticky after birth

I had another ultrasound today.  Everything was status quo. Sticky was moving around and practicing breathing!  I'm so happy to be almost finished with 30 weeks. There is something so comforting about the "thirties" vs. the "twenties!" 

I have had a few people ask me what the plan is for Sticky after birth, so I thought I would post about it here.  Obviously, we have no idea exactly what will happen, but after talking with doctors and other moms who have been through similar situations here are some of the basics...

Like all babies, the first issue to be addressed upon birth is breathing.  Many babies with PKD have trouble breathing at birth due to the lack of amniotic fluid and large kidneys not leaving any room for the lungs to expand.  Of course we hope Sticky comes out screaming, but if not then he will get assistance with his breathing immediately.  The next issue will be assessing his kidney function (or lack, thereof).  Most likely Sticky's kidneys will not be functioning at all at birth.  This will cause his blood pressure to be off the charts, so the doctors will need to give him medicine to help with that.  Due to the large size of his kidneys, the doctors will most likely decide to remove one, if not both, of his kidneys to make room for his lungs.  He will then be put on dialysis.  There are two types of dialysis (hemodialysis (HD) and peritoneal dialysis (PD)).  HD has to be done in the hospital and involves removing the blood and cleaning it.  PD flushes out the "bad stuff" through a permanent tube in the abdomen (this can be done every night while the patient sleeps).  Sticky will have to have the tube surgically implanted.  While he heals, he will have to be on HD.  Eventually he'll be put on PD.  The BEST news is that PD can be eventually done at home (once Sticky is stable)!  And since it is done at night, Sticky can be a "fairly normal" baby during the day.  Obviously, PD isn't a piece of cake and there are many complications and issues, but we are happy to have this option!  The next step will be getting Sticky a kidney transplant - he has to be at least 20 lbs for this.  Hopefully I will be a perfect match for him and he can have one of my kidneys. After the transplant, I hear that life drastically changes for the better.  We are so looking forward to this day!  Obviously, the road will be bumpy, but we are just very hopeful to get to travel down this road at all. 

Thanks for the continued prayers and/or positive thoughts!  Have a great holiday weekend!

2 comments:

  1. Thanks for posting this info and update, it is good news to hear! I'm so happy to hear you have a whole team behind you guys. Prayers and hugs going your way--Sticky has a lot of people rooting for him!

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