NICUs are an interesting place. We have a team of awesome nurses, practitioners, doctors, social workers, respiratory therapists, nutritionists, occupational therapists, and others. Unfortunately, all the babies in the NICU require care 24 hours/day, 7 days/week, 365 days/year. Most of the staff works three 12 hour shifts/week so it is almost impossible to have a consistent "Continuity of Care."
This is the largest reason why parents should be involved in their kids care, especially when they are more critical. I see myself as the person responsible for their care, even though I don't get to make many of the decisions.
This is also why Primary nurses are so important. Primary nurses have "dibs" on a patient, so they will work with the same kids every time they are on.
The toughest part of the deal is the doctors. They work three days in a row, and then you don't see them again for a long time (I'm still not 100% sure of the rotation). For instance, Doctor 1 started our week with an idea of "Plan A" for Scarlett's PDA based on what we expected to see on Monday morning's X-Rays. We saw what we expected on Monday morning, but Doctor 2 had started their three day rotation that day and in their mind, that plan wasn't worth trying. Then on Thursday, Doctor 3 came on and wasnted to try Plan A again! The good news is that this doctor has already made an effort to talk to the next doctor to make sure they are on the same page (probably because I brought this situation up on Thursday).
With all that said, I really like this doctors approach in a number of areas. He would like to get the kids off the ventilators ASAP so they don't end up with chronic lung issues. We changed Grayson's pressure setting and might try him on the SIPAP tomorrow if he does well overnight. We are also trying Grayson on LASIKS which is a diuretic and we are hoping will help clear out the haziness in his lungs.
Scarlett is also getting treated with LASIKS but in her case it is to help her PDA. Her echo showed that her left atrium is slightly enlarged, so we need to get the duct closed ASAP before it causes a bigger issue. Its a tough situation with her taking antibiotics right now, because one of the best ways to treat it is limiting fluids. Our hope is the LASIKS fix it, but if not, we may be talking surgery :-/
The only other update is we are talking about a steroid treatment for both of them to help their lungs. If we can't get them off ventilators soon that will probably be the next step.
An early post, Tim! I hope that means you will get some much needed rest tonight, God, we thank you for your vigilant care of Scarlett and Grayson. Please inspire the doctors and medical personnel in their treatment of the babies because they are only human and need your guidance. Let the Lasix protocol help the twins without depleting their electrolytes. We pray again for healing of their lungs and Scarlett's heart without surgery. Thank you for patiently listening to our continued prayers...help us in our impatience. We are grateful for the progress they have made and long for the day when the babies will be able to rest at night in their own beds at home. Continue to give Tim and Tricia the strength and support they need each day. We look forward confidently to you for your blessings and help.
ReplyDeleteHey Beth...the timing of this post is probably really going to confuse you regarding my schedule...lol I fell asleep on the couch after getting home from our regional championship football game. Kodi woke me up to go outside and, as usual, the first thing I did was check for updates...just not at the usual time. I'll be back on my regular, early morning schedule Sunday!
Not on my regular schedule either, we are really going to confuse Beth.
ReplyDeleteYes, Tim, you and Trish are the babies' advocates, and you're both doing an outstanding job. I pray that God continues to give each of you all that you need to speak and act for Grayson and Scarlett. I pray that the doctors, nurses, practitioners, the entire team of caregivers are guided and led by God's plan for these babies. Be sure to tell the twins that today is Grandpa's birthday!! Sending love, blessings and prayers for a good day