We were reminded today just what a miracle Porter is as Sarah ran into one of our favorite nurses in the NICU. Today, she is taking care of a baby on a cooling blanket and told Sarah that it doesn't look good, but that it was not ask bad as PK. She went on to tell Sarah that PK was a miracle because of prayer. Obviously, I felt the need to share that with you because, you all had a hand in her progress to date and her future progress and we can only praise God for the work he has done over the past 3 1/2 weeks. Many praises in this email, too.
PK has done very well off of the dialysis. We are now into our fourth day without it and her creatinine level was a 1.0 Monday through Wednesday, and this morning it actually dropped to .9. The nephrologist was pleased with daily labs. Her Potassium level is a little high, so he will closely monitor that. Also, her blood pressure has gone up a bit so they put her on a very tiny dose of blood pressure medicine to help. But if all goes well, we may get to bring her home early next week or even this weekend. She will have to go home with the dialysis tube (catheter) in her abdomen just to be sure, but they will monitor her levels over the next 2-4 weeks and then the hope is that she has surgery to remove the catheter.
The neurologist wants to keep her on her seizure medicine after we go home, and schedule another EEG for a week after our discharge date. Still no seizure activity and she has really been very active, but a source of stress nonetheless. Also, the developmental doctor came in this morning and is happy with where she is at and how well Porter eats. She said that she is cautiously optimistic, but that after the start Porter had, we are in the high risk category of many developmental issues. Nothing we didn't already know, just another reminder that once we leave the NICU, we will not be done.
So, we are in the process of forming "Team PK". As a first draft, Sarah and I are the owners/general managers/coaches, the pediatrician, nephrologist, neurologist, and occupational therapist make up our team, Luke is the waterboy, our family are the cheerleaders, and you all are the rabid fans. GO TEAM PK!!
1. Pray that creatinine level continues to drop even without the assistance of dialysis and that dialysis does not return.
2. Pray that the seizures were an isolated incident and do not return.
3. Pray that her blood pressure is stabilized by the medicine.
4. Pray that her potassium level moves back to a more normal level.
5. Pray for strength for Sarah. We are in our fourth week of going to the NICU every day and, Sarah has been spending a lot of time up there. It is getting very difficult to leave each night.
6. Pray that Porter has the strength and determination only God can give to keep fighting.