Sunday, July 31, 2011
We start the day at 9:30 with a renal ultrasound. This will give us pictures of her cystic kidneys. I don't look forward to that, but Hope does pretty good with the ultrasound itself. I hate looking at her kidneys and knowing that they are just more cystic and not really growing. I really need to spend more time doing some research on this, but I just don't feel up to it. What I have read is not good and I hate to read any more about it.
Next up at 11:00 we meet with the nephrologist. He will have one of his nurses attempt to draw some blood. This will NOT go well at all because they suck at blood draws on kids with hard sticks. I am thinking if we have time between the ultrasound and the office visit I may head up to cardiology and have John (the best stick in town) take some blood. The appointment with Dr. Kwan, the nephrologist, will probably be crappy. I don't like or understand nephrology and the appointment usually ends with me crying because I know Hope will eventually need a transplant and I always worry this will be the appointment where we find out she is entering kidney failure. My heart breaks even typing this because I hate this reality. I hate that she has to have another life-threatening problem. Isn't the heart enough?
We will have a little lunch and then visit the PICU to hand out some bags of stuff to the parents that are there with their baby. I have these cute heart bags and I have filled them with all sorts of stuff. I am excited that we will have the time to make this delivery. I am looking forward to seeing the nurses and not actually having Hope a patient.
At 1:30 we have the echo and EKG...which will be rough for Hope and I. She hates these more than I can even describe. People in the waiting room can hear her screaming. It breaks my heart. I keep thinking that maybe, just maybe she will learn to be OK with the appointments, but we only go every 6 months, so it is really hard.
At 2:30 we meet with Hope's cardiologist. I pray it will be a great appointment. Her last one was really good...other than the weight gain issue...and I am hoping for the same. I know we are going to discuss a g-tube and that is why Jerry is coming with us. He is totally against it and I want him to hear what the doctor's are saying. I want him to hear everything. I am on the fence with the g-tube. I would prefer not putting Hope through another surgery...especially one that is kind of elective. She is eating...just not a lot. Definitely not enough for her to gain much weight. I just pray it will be a better day than I am expecting.
I am hoping you all can say a prayer for us tomorrow. We would appreciate all the good vibes during our appointments.
Posted by Wodzisz Family at 9:58 PM