Email sent on 5/29/11
We've been trying to finish an update for a few days now but haven't got a chance. I'm unexpectedly sitting in Children's at the moment. Having awoken from a fitful rest on a hospital cot I am seizing the opportunity. Evelyn was admitted yesterday for an installation of an NG (nose feeding tube). She was a bit dehydrated (for those of you who care about details her creatnine levels were up from .7 to 1.1 and her potassium was low) and of course her growth is in crisis (she lost weight since her last appointment even while giving her supplements and restricting protein). So to avoid a health crisis while we wait for the g-tube (stomach feeding tube) installation (which should happen in the next month) we decided to give her little body the help it needs right away. She's doing really well--she's such a trooper. Both Marilouise and Evelyn had fevers yesterday. So in the midst of being ill (have you ever seen a very active and happy 18 month old wilt like a flower in some heat and have to endure poking and prodding?...I started crying at 2:00 and stopped around 6:00). The installation went as well as can be expected when you are stuffing a tube down a child's nose all the way to her stomach (think gagging and sputtering). They've been running the pump at the level we'll run it at home since about midnight and she seems to be tolerating the amount well. We hope to go home today with a pump and newly acquired skills.
Good news:
After a long night of nurses checking vitals, talking to momma, crying and asking to be held little Ev is sleeping. I've had a latte from downstairs and I'm about to steal away to the cafeteria. I feel peaceful.
My parents are saints and drove down to take care of ML last night.
My friend Kirsten is a NICU nurse and is willing to help me in this new adventure.
Immediate prayer requests:
Pray Evelyn doesn't pull out the tube because guess who got trained and gets to put it back in the event an 18 month gets curious.
Pray that she reaches her normal weight and height with the help of the tubes and that eating in general becomes joyful in our house again.
Longer term prayer request:
Pray for a transplant match. We did find out at the appointment on Tuesday that it is only a matter of time before Evelyn will receive a transplant. We already knew this in theory but now the doctors are trying to help us understand the road map as if we are actually driving not just talking about a trip we might make some day. She's currently hovering at just below 18 pounds and she will need to be 25 pounds to receive a transplant. Pray that she reaches the minimum weight before she needs dialysis (preemptive transplant is an option and if it is right then we'd like to consider it). The doctors are sort of hinting at transplant in the next few years.
Thanks for praying and loving us through this.
Love,
Julianne
